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Mothers of children with chronic illnesses

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Title:
Mothers of children with chronic illnesses A caregiver burden model and summer camp as respite care
Alternate title:
Caregiver burden model and summer camp as respite care
Creator:
Meltzer, Lisa Joan
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English
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xi, 141 leaves : ill. ; 29 cm.

Subjects

Subjects / Keywords:
Asthma ( jstor )
Caregiver burden ( jstor )
Child psychology ( jstor )
Chronic conditions ( jstor )
Diseases ( jstor )
Epilepsy ( jstor )
Kidneys ( jstor )
Mothers ( jstor )
Parents ( jstor )
Respite care ( jstor )
Camping ( mesh )
Caregivers -- psychology ( mesh )
Chronic Disease -- Child ( mesh )
Chronic Disease -- psychology ( mesh )
Cost of Illness ( mesh )
Department of Clinical and Health Psychology thesis Ph.D ( mesh )
Dissertations, Academic -- College of Health Professions -- Department of Clinical and Health Psychology -- UF ( mesh )
Models, Theoretical ( mesh )
Mothers -- psychology ( mesh )
Research ( mesh )
Respite Care ( mesh )
Genre:
bibliography ( marcgt )
non-fiction ( marcgt )

Notes

Thesis:
Thesis (Ph.D)--University of Florida, 2002.
Bibliography:
Bibliography: leaves 145-151.
General Note:
Typescript.
General Note:
Vita.
Statement of Responsibility:
by Lisa Joan Meltzer.

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University of Florida
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Copyright [name of dissertation author]. Permission granted to the University of Florida to digitize, archive and distribute this item for non-profit research and educational purposes. Any reuse of this item in excess of fair use or other copyright exemptions requires permission of the copyright holder.
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51649179 ( OCLC )

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MOTHERS OF CHILDREN WITH CHRONIC ILLNESSES:
A CAREGIVER BURDEN MODEL AND SUMMER CAMP AS RESPITE CARE












By

LISA JOAN MELTZER


A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR THE DEGREE OF
DOCTOR OF PHILOSOPHY

UNIVERSITY OF FLORIDA


2002


























In memory of Carrie Taylor.














ACKNOWLEDGMENTS

Many people were involved with helping me make this project happen. I would

like to express my sincere gratitude to my chairperson and mentor, Dr. Suzanne Bennett

Johnson, whose patience and guidance allowed my dream of studying the benefits of

summer camp to become a reality. I would like to acknowledge my committee, Drs.

Stephen Boggs, Gary Geffken, Kathleen Long, and Alexandra Quittner, for their input

and comments at several stages in this process. This project could not have been

completed without the generous funding from the Children's Miracle Network, the

Geoffrey Clark Ryan Memorial Award in Pediatric Psychology, and the American

Psychological Association. I would like to express my appreciation to the Boggy Creek

Gang Camp for allowing me to interview the mothers of their campers. I would like to

offer a special thank you to June Matthews, who helped me convince the gang that this

study should happen. I would like to acknowledge my dedicated research assistants,

Amy Baughcun and Nicole Karapanagiotis, for their tireless effort to reach the mothers

by telephone. I am grateful that my family is always there to provide support and

encouragement. Finally, I would like to thank Joyce Meltzer for unconditional love and

support that has allowed me to set my goals high, and then go after them.















TABLE OF CONTENTS

page

ACKNOWLEDGMENTS..................................................................... i

LIST OF TABLES ........................................................................................................ vii

LIST OF FIGU RES ....................................................................................................... ix

ABSTRA CT ........................................................................................................................ x

INTRODUCTION AND REVIEW OF THE LITERATURE ........................................ 1

Im pact of the Child's Illness on the Fam ily ............................................................... 2
Concepts and M odels of Caregiver Burden ............................................................... 4
Parenting Stress ...................................................................................................... 7
Therapeutic Interventions ......................................................................................... 8
Support Groups ........................................................................................................... 9
Respite Care ................................................................................................................ 9
Therapeutic Sum m er Cam ps ..................................................................................... 11
Sum m ary ....................................................................................................................... 12

HYPOTH ESES .................................................................................................................. 15

Cross-Sectional H ypotheses (Pre-Cam p) ................................................................. 15
Longitudinal H ypotheses .......................................................................................... 17
Additional H ypotheses ............................................................................................... 19

M ETHOD S ........................................................................................................................ 21

Participants .................................................................................................................... 21
Recruitm ent ................................................................................................................... 24
Attrition and M issing D ata ........................................................................................ 25
Structured Telephone Interview s .............................................................................. 26
Structured Interview and Questionnaires ................................................................. 28
Dem ographics ....................................................................................................... 28
Objective Stress ................................................................................................... 28
Subjective Stress ................................................................................................... 30









Outcom es .................................................................................................................. 30
Overload ................................................................................................................ 30
Depression-Anxiety .......................................................................................... 31
M aternal D istress .............................................................................................. 31
Recreational Activities ...................................................................................... 31
Tim e D em ands ..................................................................................................... 32

RESU LTS .......................................................................................................................... 36

Prelim inary Analyses ................................................................................................. 36
Objective Stress Calculations and Related Descriptive Statistics ......................... 36
Subjective Stress Calculation and Related Descriptive Statistics ........................ 38
Calculation of Outcome Variables and Related Descriptive Statistics ................. 39
Overload ................................................................................................................ 39
D epression-Anxiety .......................................................................................... 40
M aternal D istress .............................................................................................. 40
Recreational Activities Checklist (RAC) .......................................................... 41
Tim e D em ands ................................................................................................. 41
Cross-Sectional Analyses (Pre-Cam p) ...................................................................... 42
Longitudinal Analyses .............................................................................................. 49
Longitudinal Analyses by Illness Group .................................................................... 53
Cancer on Treatm ent ............................................................................................ 54
Epilepsy ..................................................................................................................... 55
Kidney ....................................................................................................................... 56
A sthm a ...................................................................................................................... 56
Cancer N ot on Treatm ent ...................................................................................... 57
Additional Analyses ................................................................................................. 58
Cancer on Treatm ent ............................................................................................ 83
Epilepsy ..................................................................................................................... 83
Kidney ....................................................................................................................... 83
Asthm a ...................................................................................................................... 83
Cancer Not on Treatm ent ...................................................................................... 84

DISCU SSION .................................................................................................................... 97

Demographic Differences Between Illness Groups ................................................. 97
Differences Between Illness Groups for Caregiver Burden Variables .................... 99
Comparison of Outcome Variables to Normative Populations ................................... 101
Caregiver Burden M odel ............................................................................................. 104
Cam p Generated Respite Care .................................................................................... 113
Cam p Generated Respite for Each Illness Group ....................................................... 118
Study Strengths ........................................................................................................... 124
Study Lim itations ........................................................................................................ 125
Im plications and Future D irections ............................................................................. 128








APPENDIX A STRUCTURED INTERVIEW OUTLINE ............................................ 134

APPENDIX B OVERLOAD, DEPRESSION-ANXIETY, MATERNAL DISTRESS. 140

APPENDIX C EXCESS TIME DEMANDS SCALE .................................................... 142

APPENDIX D RECREATIONAL ACTIVITIES CHECKLIST ................................... 143

R E FERE N C E S ................................................................................................................ 145

BIOGRAPHICAL SKETCH ........................................................................................... 152














LIST OF TABLES


Table Page

1. Demographic Characteristics of the Study Sample ................................................... 33

2. Means, Standard Deviations, and Significant Group Differences for Illness Groups
and Demographic Variables ............................................................................ 34

3. Mean and Standard Deviations for Attrition and Missing Data ................................. 35

4. Means, Standard Deviations, and Significant Illness Group Differences for Objective
and Subjective Stress at Pre-Camp Assessment ............................................ 59

5. Percent Of Caregiving Activities Rated As Stressful ................................................ 60

6. Means and Standard Deviations for Illness Groups and Outcome Variables At Pre-
Cam p A ssessm ent .......................................................................................... 61

7. Hierarchical Multiple Regression Steps: Predictors of Caregiving Frequency ...... 63

8. Hierarchical Multiple Regression Steps: Predictors of Caregiving Duration ........... 65

9. Hierarchical Multiple Regression Steps: Predictors of Subjective Stress ................. 67

10. Hierarchical Multiple Regression Steps: Predictors of Overload ............................ 69

11. Hierarchical Multiple Regression Steps: Predictors of Depression-Anxiety ........... 71

12. Hierarchical Multiple Regression Steps: Predictors of Maternal Distress .............. 73

13. Hierarchical Multiple Regression Steps: Predictors of Recreational Activities ..... 75

14. ANOVA Summ ary Tables ........................................................................................ 77

15: Adjusted Means and Standard Deviations for ANOVAs ....................................... 79

17. Comparison of Means for Depression-Anxiety Using Paired t-tests ....................... 82

18. M ANOVA Summary Tables ..................................................................................... 83








19. Means and Standard Deviations for MANOVAs ..................................................... 85














LIST OF FIGURES


Figure Page

1. Proposed model of caregiver burden for parents of children with chronic illnesses ........ 14

2. Average rating of overload for previous week ............................................................ 87

3. Average rating of depression-anxiety for previous week ............................................ 88

4. Average rating of maternal distress for previous week .............................................. 89

5. Average time spent in recreational activities during the previous week .................... 90

6. Comparison of Objective Stress, Subjective Stress, and Outcomes for Cancer on
Treatm ent ........................................................................................................ 91

7. Comparison of Objective Stress, Subjective Stress, and Outcomes for Epilepsy ........ 92

8. Comparison of Objective Stress, Subjective Stress, and Outcomes for Kidney .......... 93

9. Comparison of Objective Stress, Subjective Stress, and Outcomes for Asthma ...... 94

10. Comparison of Objective Stress, Subjective Stress, and Outcomes for Cancer Not on
Treatm ent ........................................................................................................ 95

11. Average rating of time demands for previous month .............................................. 96














Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy

MOTHERS OF CHILDREN WITH CHRONIC ILLNESSES:
A CAREGIVER BURDEN MODEL AND SUMMER CAMP AS RESPITE CARE


By

Lisa Joan Meltzer

August 2002


Chairman: Suzanne Bennett Johnson, Ph.D.
Major Department: Clinical and Health Psychology



This study empirically supported a theoretical model of caregiver burden for

mothers of children with chronic illnesses. In addition, this study investigated whether

summer camps for children with chronic illnesses provided respite care for mothers.

Participants were 179 mothers whose children with cancer, epilepsy, kidney disorders

and asthma attended a summer camp for children with chronic illnesses. Mothers were

interviewed one month before their child attended camp, while their child was at camp,

and one week and one month after their child returned home from camp. Mothers

completed a structured interview that assessed objective stress (caregiving frequency and

caregiving duration), subjective stress (stress related to caregiving), and psychosocial

outcomes (overload, depression-anxiety, maternal distress and recreational activity time).

Multiple regression analyses were used to examine predictors of caregiver burden, while








repeated measures ANOVAs were conducted to examine the impact of respite care on

caregiver burden over time.

This study supported the proposed model of caregiver burden, demonstrating an

indirect effect of caregiving activities on psychosocial outcome variables through

subjective stress. Significant predictors of caregiving frequency and duration included

child's illness and child's sex, with mothers of all illness groups reporting more objective

stress than mothers of children with cancer on treatment, and mothers of boys reporting

more objective stress than mothers of girls. Caregiving frequency, caregiving duration,

and illness group significantly predicted subjective stress, with mothers who reported

greater objective stress, or who had children with cancer on treatment or asthma reporting

greater caregiving stress. All psychosocial outcome variables were predicted by

caregiving stress. Additional predictors included percent of time mother was the primary

caregiver, maternal employment status, and maternal race. The results from this study

also indicated that summer camps for children with chronic illnesses provided respite

care for mothers by improving psychosocial outcomes during the respite care (camp),

with some benefits maintained for up to one month after camp ended. Results from this

study highlight the importance of studying stress related to disease specific caregiving,

and the relationship between caregiving stress and outcomes. In addition,

conceptualizing summer camps as respite care allows these camps to serve as an

intervention for caregiver burden.














INTRODUCTION AND REVIEW OF THE LITERATURE

Due to advances in medical technology, many illnesses that were once fatal for

children are now considered chronic physical conditions. Consequently, current pediatric

psychology research primarily focuses on adjusting to and coping with a chronic illness,

compliance with medical regimens, and quality of life issues for the patient and family.

These areas are important to study, as findings from the research can be applied clinically

to improve psychosocial and medical outcomes. A "chronic physical condition" is

defined as a physical, usually non-fatal condition that (1) interferes with daily functioning

for more than three months in a year; or (2) causes hospitalization lasting more than one

month a year; or (3) is thought at the time of diagnosis to result in either of the preceding

(Pless & Pinkerton, 1975). Most chronic physical conditions can be medically managed,

although most cannot be cured (Wallander & Thompson, 1995). Approximately 10-20%

of the general child population have chronic illnesses however only about 20-25% of

these children are considered to have more severe conditions, with greater functional

impairment (Newacheck, Budetti, & Halfon, 1986). The most common serious chronic

conditions are asthma, seizure disorders, diabetes, cerebral palsy, and arthritis

(Gortmaker & Sappenfield, 1984). It has been estimated that more than one million

children have a serious chronic illness or disability that requires ongoing and

comprehensive medical care (Quittner & DiGirolamo, 1998).

Although chronic physical conditions may have a significant impact on the child,

the impact of these illnesses on the family must also be considered. Kazak et al. (1995)
1







2
cited multiple reasons why it is important to include the family when studying the impact

of chronic physical conditions. Children rarely come unaccompanied to a clinic or

hospital for medical care, and usually are unable to give consent for treatment. A child's

understanding of having an illness and its long term implications is limited by

developmental stage, requiring the parent to become knowledgeable about medical

treatments, which can often be complex and long-term. In addition, as a parent's

understanding of the illness and its long-term consequences increase, the parent may

experience more emotional distress than the child. With advances in medical technology,

medical care is also being moved more frequently into the home, requiring parents to

administer complex daily medical regimens. These responsibilities can take a toll on

parents, requiring not only time, but also physical and emotional energy, often resulting

in significant parental stress.

The following review will begin with a brief discussion of how caring for a child

with a chronic illness can disrupt the family. This will be followed by an examination of

the concepts and theoretical models related to caregiver burden and their application in

pediatric psychology research. Finally, a review of the existing literature on therapeutic

interventions for parents of children with chronic physical conditions will demonstrate

the need for further empirical research on the effectiveness of interventions that reduce

caregiver burden.


Impact of the Child's Illness on the Family

The literature has consistently found that parenting a chronically ill child

significantly affects the family in multiple ways. For parents, caring for a child with a

chronic illness is a great stress, combining the demands of parenting with the emotional







3
and physical burdens of caring for the child's chronic illness (Drotar, 1992). Parents of

chronically ill children have reported more anxiety and depression than parents of healthy

children or normative populations. This has been found in studies of parents of children

with renal failure (Fielding et al., 1985), cystic fibrosis (CF) (Breslau, Staruch, &

Mortimer, 1982; Mullins et al., 1991; Quittner, DiGirolamo, Michel, & Eigen, 1992;

Thompson, Gustafson, Hamlett, & Spock, 1992), recurrent abdominal pain (Hodges,

Kline, Barbero, & Flanery, 1985), and physical disabilities (Gordon, Daniele, & Diller,

1992). Parents have also reported higher levels of parenting stress when caring for

children with craniofacial anomalies (Speltz, Armsden, & Clarren, 1990), type 1 diabetes

(Wysocki, Huxtable, Linscheid, & Wayne, 1989), developmental delays (McKinney &

Peterson, 1987), CF (Goldberg, Morris, Simmons, Fowler, & Levison, 1990; Quittner et

al., 1992), congenital heart disease (Goldberg et al., 1990), and hearing impairments

(Quittner, Gluekauf, & Jackson, 1990). Finally, parents have reported greater role

restriction and more limited social functioning when caring for children who are

medically fragile (Patterson, Leonard, & Titus, 1992), have spina bifida or cerebral palsy

(Breslau et al., 1982; Wallander et al., 1989), or CF (Quittner, Opipari, Regoli, Jacobsen,

& Eigen, 1992). Together these findings suggest that caring for a child with a chronic

condition can have a serious impact on a parent's general well being and overall

functioning.

However, when examined as a whole, several limitations in this literature can be

identified. First, most studies lack a theoretical model or a clear definition of caregiver

burden. Next, the impact of caring for a child with a chronic illness is often measured in

terms of general parenting or global stress, neglecting the importance of stress directly or






4
indirectly related to caring for their child's illness. Finally, although the literature

suggests that parental distress related to being a caregiver is prevalent, there are only a

limited number of studies that have examined the benefits of interventions for caregivers.

An examination of these issues in the current literature will demonstrate the need to

improve previous methodology and to empirically evaluate an intervention to relieve

caregiver burden.


Concepts and Models of Caregiver Burden

Although it may appear to be only semantics, caregiver burden has not been

defined in the pediatric psychology literature, implying that stress related to caregiving is

simply an obligation of parenting, resulting in additional parenting stress. To understand

why caregiver burden should be examined as an independent entity, one must turn to the

adult literature on caregivers of patients with Alzheimer's disease (AD) for a definition

and theoretical model. George and Gwyther (1986) defined caregiver burden as the

physical, psychological or emotional, social, and financial problems that can result from

caring for impaired older adults. However, this definition could easily be modified for

parents caring for children with chronic physical conditions. In addition to the

operational definition of caregiver burden, the most extensively researched theoretical

model of caregiver burden has evolved in the adult literature (Pearlin, 1994; Pearlin,

Mullan, Semple, & Skaff, 1990).

Pearlin's model has three primary domains: stressors, mediators, and outcomes

(Pearlin, 1994). Pearlin differentiates between primary and secondary stress, with

primary stress being caused directly by caregiving activities. Primary stress can be both

objective (for example, the level of work the caregiver must do) and subjective (related







5
more to the subjective states and experiences of the caregiver). Stress that surfaces in

areas of life outside of caregiving is secondary stress (for example, role strain or job

conflict). Mediators are defined as those actions and resources that can influence the

direction of the stress process and blunt its impact on individuals. Coping and social

support are the most commonly tested mediators in stress research. Finally, there are

outcomes, including psychological, physical, immunological, and social functioning. By

examining these separate components of the stress process, Pearlin argues that more

effective interventions can be identified (Pearlin, 1994; Pearlin, Mullan, Semple, & Skaff,

1990).

Although Pearlin's model has been the most extensively defined and empirically

supported, there are two empirically based models that have been proposed in the

pediatric psychology literature to explain caregiver stress and burden. It is important to

examine these models, noting the similarities to Pearlin's caregiving model, and leading

to the conclusion that Pearlin's model can effectively be applied to caregivers of children

with chronic illnesses.

Wallander et al. (1989) developed the disability-stress-coping model. In this

model, multiple risk factors (primary stressors) are identified, including a child's physical

disease or disability, the strain of the demands of daily living activities, and psychosocial

stress. The model states that the impact of these risk factors is moderated by resistance

factors such as social-ecological factors, intrapersonal factors, and coping.

Disability/disease parameters (objective stressors) are also believed to have both a direct

effect on adaptation (outcomes), and an indirect effect by increasing functional care strain

and psychosocial stress (subjective stress).







6
Although this model attempts to account for adaptation in parents of chronically

ill and physical handicapped children, the model's comprehensive nature has made it

difficult to study in its entirety (Thompson & Gustafson, 1996a). In addition, there has

been a lack of empirical findings to support multiple parts of this theory (Wallander &

Varni, 1998). However, the relationship between objective stress, subjective stress, and

outcomes parallels Pearlin's model, suggesting that caregiver burden may play an

important role in maternal adaptation.

The transactional stress and coping model (Thompson et al., 1992) also provides a

framework for examining the role a child's chronic illness plays in maternal adjustment.

In this model, chronic childhood illness is viewed as a stressor to which the family

attempts to adapt (primary stressor). Three psychosocial/mediational processes

(mediators) are proposed: (1) the cognitive processes of stress appraisals and efficacy

expectations, (2) the utilization of palliative and/or adaptive methods of coping, and (3)

social support in terms of family functioning. This model has been supported empirically

(Thompson & Gustafson, 1996a) and does a good job of examining the mediational

processes between the child's illness and maternal adjustment. Again, this model is

similar to Pearlin's caregiving model (Pearlin defined coping and social support as the

most commonly regarded mediators), suggesting the relevance of applying Pearlin's

model to pediatric populations.

Based on these conceptualizations, this study proposes a modification of Pearlin's

model to explain how interventions with parents of children with chronic illnesses may

relieve caregiver burden. As seen in Figure 1, objective stress is defined as home

medical treatments (e.g., daily medications, peak flow meter monitoring), medical







7
appointments or treatments outside the home (e.g., dialysis, chemotherapy), and

nighttime care (requiring the mother to awaken during the night). Subjective stress is the

mother's perception of stress related to each of the objective stressors. Outcomes are

defined in terms of overload, depression-anxiety, maternal distress, and time spent in

recreational activities.

This model suggests that the objective stress of caring for a child with a chronic

illness can directly and indirectly impact outcomes. Due to the level of care involved,

objective stress may directly result in psychological distress or reduced time to pursue

recreational activities. On the other hand, level of care may lead to subjective stress

(perceived feelings of caregiver stress), which then creates psychological distress or

insufficient energy for recreational pursuits.


Parenting Stress

Without a clear definition of caregiver burden, most researchers have examined

parenting stress without acknowledging the fact that caring for a child with a chronic

illness is above and beyond the role of "normal" parenting. The impact of caring for a

child with a chronic physical condition is usually measured in terms of general parenting

stress (e.g., Parenting Stress Index), emotional distress (e.g., Beck Depression Inventory),

and to a limited degree role and social restrictions (e.g., CF Role Strain Index). Stress

related to parenting is lumped together with the unique stress that may be associated with

caring for a chronically ill child.

The results from two studies that have compared global vs. specific types of

parenting stress demonstrated that, in fact, parents of children with chronic physical

conditions experience different types of stress than parents of healthy children. Quittner,







8
Gluekauf, and Jackson (1990) compared life stress, generic parenting stress (using the

PSI), and illness-specific stress (children with severe to profound hearing losses),

reporting that the impact of the tasks related to caring for a child who is deaf was most

predictive of maternal depression. As part of their mediational model, Thompson et al.

(1992) compared the cognitive processes of appraising daily hassles and illness tasks

(caring for a child with CF). They found that there was only 25% shared variance in

reports of daily hassles and illness specific stress. Together, the findings from these

studies suggest that the stress related to being a parent and being a caregiver of a

chronically ill child might not be the same, requiring different approaches in terms of

measurement and intervention.


Therapeutic Interventions

In the pediatric psychology literature, family focused interventions are sparse

(Wallander & Varni, 1998). There are several possible explanations for the lack of these

interventions in the literature. First, the field of pediatric psychology as a whole is still

young in terms of the research and development of intervention programs. Although

most pediatric psychologists recognize the importance of the family in terms of the

child's coping and adjustment, interventions have primarily targeted reducing the stress,

anxiety, and depression of the affected child. Although parents of chronically ill children

have been identified as experiencing more depression, anxiety, and stress than parents of

children without chronic physical conditions, the lack of recognition of these outcomes as
"caregiver burden" may have limited the number of therapeutic interventions aimed

specifically at parents. Finally, of the existing interventions, many are described







9
anecdotally, suggesting that some interventions do exist, but their effectiveness remains

to be studied empirically.

Support Groups

One intervention for parents of children with chronic physical conditions that has

been reported in the literature involves social support, either through mentors or support

groups. There are anecdotal descriptions of support groups for parents of children with

fatal genetic illnesses (Mack & Berman, 1988) and CF (Matloff & Zimmerman, 1996).

Positive outcomes identified in these groups include parents collaborating on a common

goal (i.e., providing information to pediatricians about the common symptoms of CF) and

reducing social isolation. A non-randomized empirical study of a support group for

parents of children on a neonatal intensive care unit (Roman et al., 1995) reported that

parent-to-parent support significantly reduced anxiety and tension and increased self-

esteem four months post-discharge. The interaction between veteran NICU parents and

new NICU parents provided emotional, social, and educational support to the new

parents. Ireys and colleagues (1996) found that social support in the form of mentors

resulted in reported improvements in adjustment and social support for mothers of

children with juvenile rheumatoid arthritis. These studies describe how social support

interventions can be beneficial for parents of children with chronic physical conditions.

Although this type of support may function as a mediator by reducing parental stress,

social support interventions do not alleviate the primary stress related to caregiver

burden.

Respite Care

Respite care is one type of intervention that can reduce both objective and

subjective stress related to caring for a child with a chronic illness. Respite care is







10
defined as short-term, temporary care for disabled or chronically ill people living at home

(Joyce, Singer, & Isralowitz, 1983). The service can be provided in the home or in a

residential facility (Marc & MacDonald, 1988). The purpose of respite care is to give

parents and families a break from the physical and emotional demands of caregiving

(Joyce et al., 1983). It is possible that respite care could have a direct and indirect effect

on outcomes. Direct effects may result from removing the immediate and objective stress

related to caring for the child (e.g., feeding, giving medications), resulting in decreased

psychological distress and increased opportunities for social interactions. The indirect

effect of respite care results from reduced perceptions of stress related to caregiving

(subjective stress).

Although there are few studies of respite care for children with chronic illnesses,

multiple studies have examined the benefits of respite care for families who have a child

with developmental disabilities. In-home respite care has been found to reduce caregiver

burden by relieving familial stress (Joyce et al., 1983; Marc & MacDonald, 1988;

Rimmerman, 1989), improving family functioning (Halpern, 1985; Marc & MacDonald,

1988), improving parental attitudes toward their child (Halpern, 1985; Marc &

MacDonald, 1988), reducing social isolation (Joyce et al., 1983), and decreasing parental

depression (Herman & Marcenko, 1997). Together these findings suggest that in-home

respite care is valuable and serves multiple functions for family members.

Benefits of out-of-home respite care have also been reported for mothers of

children with cerebral palsy and mental retardation. In a study of the immediate and

short-term effects of overnight respite, Botuck and Winsberg (1991) found that while the

child was away from home, mothers reported increased feelings of well-being and







11
decreased depressed mood, more time resting and sleeping, more grooming and self-care,

an increase in leisure activities and active social contact, and less time in child care and

household duties. Three to four days after the respite ended, mothers' activity levels in

terms of childcare returned to baseline, but the increases in positive affect and decreases

in depression remained.

Although the findings of Botuck and Winsberg (1991) are limited by a small

sample size (n=14), the authors suggest that overnight respite can be beneficial for

mothers of children with chronic conditions. In addition, this study identifies an existing

form of respite care for mothers of children with chronic physical illnesses, namely

overnight summer camps.

Therapeutic Summer Camps

Therapeutic summer camps began operating after World War II, as children with

chronic illnesses were often excluded from regular summer camps. The number of

camps has increased dramatically in recent years (Biggs, Heinrich, Jekel, & Cuono, 1997;

Bluebond-Langner, Perkel, Goertzel, Nelson, & McGeary, 1990), including camps for

children with asthma, bums, cancer, diabetes, epilepsy, and many other illnesses. These

camps provide an opportunity for children to "just be kids," and interact with other

children who have a similar condition. Most camps are one to two weeks and include

regular camp activities such as fishing, boating, hiking, and arts and crafts.

There are few published studies documenting the benefit of therapeutic summer

camps, and almost all of these have focused on children. The existing empirical studies

have found that therapeutic summer camps (1) increase disease knowledge for children

with diabetes (Harkavy et al., 1983) and children with cancer (Bluebond-Langner et al.,

1990), (2) increase medical regimen compliance during camps for children with diabetes







12
(Spevack, Johnson, Riley, & Silverstein, 1989) and CF (Rubin & Geiger, 1991), and (3)

improve attitudes toward illness and reduce trait anxiety for children with asthma,

diabetes, and spina bifida (Briery & Rabian, 1999). The more general psychosocial

benefits of camp for children have not been as conclusive, with mixed results for changes

in self-esteem in children with bums (Biggs et al., 1997), self-concept in children with

CF (Rubin & Geiger, 1991), and changes in locus of control in children with diabetes

(Moffatt & Pless, 1983).

Only one study examined the benefits of therapeutic summer camps for the

family. Smith et al. (1987) studied eighteen pediatric cancer patients and their families

before, during and after a one-week summer camp experience. Mothers reported an

increase in the number of activities with others outside the family from the pre-camp to

the during-camp assessment. In addition, two weeks after camp, mothers' social

interactions continued to increase, a finding that was maintained four weeks post-camp.

It is also interesting to note that siblings of the cancer patients reported not only an

increase in social activities with the family during and after camp, but a decrease in the

number of activities with others outside of the family. Both findings were maintained

four weeks post-camp. The results from this study suggest that camp can play an

important role in relieving some of the caregiver burden mothers experience.


Summary

An empirical investigation of caregiver burden and respite care as an intervention

for parents' of children with chronic illnesses is clearly needed. Caregiver burden may

result from the many demands related to caregiving, resulting in increased perceptions of

stress related to caregiving, which in turn may result in parents experiencing greater







13
psychosocial distress. As overnight respite care removes the child from the home,

caregiving requirements decrease. In turn, parents may experience decreased feelings of

subjective stress, psychological stress, and have more time for recreational and social

pursuits. The growing number of therapeutic summer camps for children with chronic

physical conditions may provide respite care for parents, removing the child from the

home for one to two weeks during the summer. The purposes of this study were to (1)

document caregiver burden in mothers of children with chronic illnesses; and (2)

empirically measure the effect of respite care provided by camp on maternal objective

and subjective stress, as well as the impact on psychological distress and recreational

activity time. Data were examined both cross-sectionally (before camp) and

longitudinally (before, during, and after camp).










PATIENT/FAMILY
CHARACTERISTICS
Younger children
Disease type
Disease duration
Single parent status


I



OBJECTIVE STRESSORS
Home medical treatments
Medical appointments/
Treatments outside home
Nighttime care








SUBJECTIVE STRESS
Perception of caregiver stress








OUTCOMES
Maternal Overload
Depression-Anxiety
Maternal Distress
Recreational Activity Time

Figure 1. Proposed model of caregiver burden for parents of children with chronic
illnesses.














HYPOTHESES


Cross-Sectional Hypotheses (Pre-Camp)

The following hypotheses were proposed in order to test the modification of

Pearlin's theoretical caregiver burden model.

1. Demographic variables will predict objective stress.

Younger age, illness group, shorter disease duration, and single parent status were

expected to predict greater frequency and duration of objective stress. More specifically,

younger children typically require more care due to their developmental level.

Each pediatric illness has a different presentation, requiring different levels of

care. For example, treatment for kidney disease can include either frequent dialysis or a

transplant, both of which require a significant amount of time from the caregiver.

Asthma, on the other hand, requires daily medical management, but if cared for properly,

can be an illness that the child simply lives with. Thus mothers of children with illnesses

that required more complex daily management were expected to report more objective

stress (frequency and duration of caregiving activities) than mothers of children whose

illnesses require less intense medical regimens.

Due to the many adjustments in daily functioning that must be made following the

diagnosis of a chronic illness, mothers have reported increased levels of stress

immediately after diagnosis (Kovacs et al., 1985; Quittner et al., 1992). This suggests







16
that mothers of children with a more recently diagnosed illness may report greater

objective stress than mothers of children with longer duration illnesses.

Finally, due to the lack of additional caregiver support, single mothers were

expected to report a greater level of objective stress than mothers who have a spouse to

share some of the caregiving responsibilities.

2. Greater objective stress will be related to greater subjective stress.

As caregiving tasks increase in frequency or duration, an increased demand is

placed on mothers. Thus it was expected that mothers who reported greater objective

stress (frequency and duration of caregiving activities) would also report more subjective

stress (perceived caregiving stress).

3. Greater objective stress will predict greater negative outcomes.

Objective stress was believed to have a direct effect on maternal outcomes, thus

mothers who reported greater objective stress (frequency and duration of caregiving

activities) were expected to also report greater psychological distress (overload,

depression-anxiety, maternal distress) and less time spent in recreational activities.

4. Greater subjective stress will predict greater negative outcomes.

As caregiving can feel relentless and exhausting at times, the perception of greater

caregiver stress was expected to lead to greater caregiver psychological distress (i.e.,

overload, depression-anxiety, maternal distress) and less recreational activity time for

mothers.

5. Subjective stress mediates the relationship between objective stress and outcomes

The proposed model fits the definition of a mediator model: changes in the

independent variable (objective stress) affect the outcome both directly and indirectly by







17
causing changes in the mediator (subjective stress), which then leads to changes in the

outcomes (Baron & Kenny, 1986; Holmbeck, 1997). According to Baron and Kenny

(1986), four conditions must be met for a variable to be considered a mediator: (1) the

predictor (objective stress) must be significantly associated with the hypothesized

mediator (subjective stress), (2) the predictor (objective stress) must be significantly

associated with the dependent variable (outcomes), (3) the mediator (subjective stress)

must be significantly associated with the dependent variable (outcomes), and (4) the

impact of the predictor (objective stress) on the dependent measure (outcomes) should be

reduced after controlling for the mediator (subjective stress).


Longitudinal Hypotheses

As mothers do not have to care for their child's illness during the camp session, it

was assumed that the mother did not experience objective stress while the child was

away. Therefore, it was hypothesized that camp would provide respite care for all

mothers. The camp that was used in this investigation offered eight one-week sessions,

with each session designated for a different illness population. Although this study had no

control group of healthy children, preliminary analyses demonstrated significant

differences between the caregiving stress of mothers of children with cancer on and off

treatment. Thus, we decided to use the cancer not on treatment group as a comparison

group. As these children are in remission from their disease, they require a minimal

amount of caregiving related to their illness (e.g., maintenance medications, occasional

medical appointments). Consequently, objective stress was relatively low for this group

of children. In addition, the collection of data across multiple camp sessions allowed for

a type of multiple baseline design. A replication of the changes in the outcome variables







18
before, during, and after camp for each illness group included in the study would suggest

that as an intervention, camp does provide respite care for mothers.

1. Objective stress, which is assumed to decrease while the child is at camp, will remain
at baseline levels one week and one month post-camp.

It was assumed that the objective stress related to caring for a child with a chronic

illness would decrease while the child was at camp since the mother was no longer

responsible for the day to day care of her child. However, camp only provides a short-

term break from caregiving, with the treatment demands of the child's illness remaining

the same when the child returns home. Thus, objective stress was not expected to change

one week or one month after the camp session ended. Some children may have learned

how to manage their illness more independently at camp, thus it was possible that the

level of objective stress would decrease post-camp for some mothers.

2. Removing the objective stress related to caring for a child with a chronic illness will
reduce subjective stress after camp, with changes maintained at least one week post-
camp, and up to one month post-camp.

Although objective stress was expected to remain at baseline levels following

camp, it was hypothesized that the respite care provided by camp would decrease the

mothers' perception of stress related to caregiving (subjective stress). It was expected

that subjective stress would be lower one week after the child returned home from camp,

as mothers would still be enjoying the benefits of having a week without caregiving

duties. However, the maintenance of these changes one month after camp was not

predicted. As the level of objective stress was expected to remain at baseline level after

camp, the day to day burden of caregiving may eventually negate the emotional benefits

mothers experienced while their child was attending camp.







19
3. Removing the objective stress related to caring for a child with a chronic illness will
change outcomes (reduce psychological distress and increase time spent in recreational
activities) during camp, with changes maintained at least one week post-camp, and up to
one month post-camp.

The respite provided by camp allows mothers a week without the daily objective

stress of caring for the child with a chronic illness. The reduction of objective stress was

expected to improve outcomes by reducing feelings of overload, maternal depression and

anxiety, maternal distress, and increasing recreational activity time while the child is at

camp. Similar to the findings of Botuck and Winsberg (1991), it was expected that

mothers would continue to display improved outcomes one week after camp. However,

by definition respite care only provides temporary relief. Thus, the maintenance of these

findings one month post-camp was not expected. Although Botuck and Winsberg found

respite care reduced maternal depression and increased positive affect, their follow-up

period was only 4 days post-respite. Smith et al. (1987) found increases in social

activities to be maintained 4 weeks post-camp, but they did not examine changes in

maternal distress. The lack of conclusive previous findings suggests that changes in

psychological distress and social activities one month post-camp could be either

maintained or return to baseline levels.


Additional Hypotheses

The benefits of respite care will generalize to a more stable psychological phenomenon
(i.e., time demands).

Caregiver burden can extend beyond psychological distress, impacting a mother's

personal growth and development in terms of interpersonal interactions, employment, and

outside interests. However, if respite care provided lower levels of psychological

distress, mothers may perceive fewer demands on their time. Therefore, it was expected







20
that if the benefits of respite care were found (changes in psychosocial outcomes),

mothers would report fewer time demands one month after camp compared to one month

before camp.














METHODS


Participants

Participants were 179 mothers of children with cancer, epilepsy, kidney disorders,

or asthma who attended the Boggy Creek Gang Camp (BCGC) in Eustis, Florida during

the summer of 2000. The total sample of mothers was 72.6% Caucasian and 66.5%

married; the children ranged in age from 6.5-17 years. See Table 1 for complete

demographic data.

Although fathers and other caregivers (e.g., grandmothers) may also experience

caregiver burden, mothers were the focus of this study because mothers are typically the

primary caregiver (Hauenstein, 1990). The targeted number of subjects per session

(n=50) was chosen based on two criterion: (1) number of expected eligible campers (e.g.,

a maximum of 50 campers with kidney disorders had applied in previous years) and (2)

n=50 per group would provide sufficient power to detect medium to large effect sizes for

the proposed analyses in this study (Cohen, 1992). Due to the small number of

applications from kidney campers (n=44) for summer 2000, the target number of 50 was

not reached for this group.

Illness groups were selected based on amount of time required for medical care

(both at home and away-from-home appointments/treatments), level of functional

impairment, and severity of illness. More specifically, cancer is an acute illness that can

be life threatening. When diagnosed, cancer usually creates a sudden change in family







22
functioning (Dahlquist, Czyzewski, Copeland, & Jones, 1993; Manne et al., 1995).

Although home medical treatments are not time consuming, medical appointments and

hospitalizations can be frequent and time intensive. Although 55% of the children

attending camp were not currently receiving treatment, we originally planned to have

only one cancer group. This decision was based on studies by Bakarat and colleagues,

demonstrating that parents continue to experience distress related to reminders of the

cancer (in this case, sending the child to a "cancer camp") as well as daily stress of

medical sequelae (Barakat et al., 1997; Barakat et al., 1998). However, in our sample,

subjective stress significantly differed between the on and off treatment groups. Thus

although 51 mothers of children with cancer were recruited to participate, they were

divided into two groups, on treatment (n=23) and not on treatment (n=28). Due to the

significantly lower levels of both objective and subjective stress reported by mothers of

children with cancer not on treatment compared to all illnesses, we decided to use this

group as a comparison group.

Epilepsy and other seizure disorders require constant supervision for seizure

activity, as well as an often complex medication regimen. Side effects from

anticonvulsant medications include impaired cognitive functioning, hyperactivity, and

possible impairments of adaptive behaviors (DuPaul & Kyle, 1995). These side effects

may significantly influence the level of stress caregivers experience.

Approximately 20% of the campers with kidney disorders were on some type of

dialysis (either daily home dialysis or hemodialysis for four hours, three times a week),

while approximately 30% of the campers were transplant recipients, requiring daily

immunosuppressants and other medications. The other half of the kidney campers







23
required some type of daily medication management. Between one-third and one-half of

the entire kidney camper population required multiple catheterizations daily to relieve

their bladders (due to incomplete camper files, an exact number is not available).

Finally, children with severe asthma are required to use meter dose inhalers

(MDIs) multiple times per day and are encouraged to monitor pulmonary functioning

with a daily peak flow assessment, while all children with asthma must carry a rescue

inhaler in case of an asthma attack. Based on physician reports, of those attending camp,

approximately 40% met NIH criteria for moderate persistent to severe persistent asthma,

while approximately 27% met NIH criteria for mild intermittent to mild persistent

asthma. The other third of the asthma camper files were missing the NIH diagnosis.

To examine whether there were any demographic differences between disease

groups, one-way ANOVAs were conducted using the pre-camp data. Between disease

group differences were expected because of the camp's lower age limit for asthma

campers (12 years) compared to all other illness groups (16 years). The between disease-

group age difference was confirmed, F (4, 174) = 15.0, p < .01. Other significant

between disease-group differences occurred for the child's duration of disease F (4, 174)

= 19.21, p < .01, child's previous camp experience, F (4, 174) = 3.90, p < .01, and

maternal age, F (4, 174) = 3.44, p = .01. Means, standard deviations, and significant

group differences can be seen in Table 2.

Post-hoc analyses, using the Tukey Honestly Significant Difference (HSD) test,

indicate that children with cancer on treatment and asthma were significantly younger

than children with epilepsy, kidney disorders, and cancer not on treatment. Duration of

disease for children with cancer (both on and off treatment) was significantly shorter







24
compared to children with epilepsy, kidney disorders, or asthma. Children with epilepsy

and cancer not on treatment had attended camp for significantly more summers than

children with asthma. Finally, mothers of children with cancer on treatment were

significantly younger than mothers of children with epilepsy and kidney disorders.


Recruitment

All mothers of campers from the selected four sessions received a letter in the

mail approximately six weeks before their child's camp session began. This letter

explained the study's purpose and procedures, and if the mother verbally agreed by

telephone to participate, the letter served as the consent form. This study was approved

by the University of Florida Health Science Center's Institutional Review Board.

Mothers of the children attending the four selected sessions (cancer, epilepsy, kidney, and

asthma) were listed alphabetically and 266 were selected using a random number table.

The mothers who were selected received a phone call from the principal investigator,

who again explained the purpose of the study, what participation would require, and

reinforced that the mother could refuse to participate or withdraw from the study without

any penalty to her child's camping experience this year or in future years. Mothers were

also informed by letter and telephone that the camp would receive a donation for each

call completed. A $2000 donation to the Boggy Creek Gang Camp was made in

November 2000 in honor of the mothers who participated.

Of the 266 mothers selected with the random number table, 35 were not eligible

for the following reasons: phone not in service (n=14), the mother did not speak Spanish

(some interviews were conducted in Spanish) or enough English to communicate with the

interviewer (n=8), respondent was not the child's mother (n=6), the child was not







25
attending camp (n=5), one mother relied on the neighbors phone, and one mother was

attending camp as a nurse.

Every mother randomly selected to participate was called at least five times, at

various times of the day, during both weekdays and weekend days. When 50-55 mothers

per illness group agreed to participate, recruitment calls were ceased. Thirty-six mothers

were not reached during the designated recruitment period, resulting in 195 eligible

participants. Of those who were eligible, 10 mothers declined to participate stating a

personal lack of time (n=7), interest (n=2), or desire to "put the experience (of her child's

illness) behind her" (n= 1). Of the mothers who declined to participate, 60% had children

with cancer, significantly more than all other illness groups combined, Fisher's exact test,

p =.03.


Attrition and Missing Data

Of the 185 mothers who agreed to participate in the study, six were dropped from

all analyses (two were never reached after the recruitment call, children of the other four

mothers were not at home during the relevant pre-camp baseline period, thus we were

unable to collect baseline caregiving data), resulting in the final sample of 179 mothers.

T-tests and Fisher's exact tests were used to examine differences between subjects

who agreed to participate and then did not complete any telephone interviews (n = 6) and

those who completed the pre-camp interview (n = 179). 80% of those who did not

participate had children with asthma versus any of the other illnesses combined, Fisher's

exact test, p = .03.

Of the 179 mothers who participated in this study, 80% were reached during all

four assessment times. Eighteen mothers were not included in the longitudinal analyses







26
for the following reasons: due to a medical exacerbation, the child did not actually attend

camp (n = 13), the child had a negative experience at camp (e.g., the child was sent home

early due to behavior problems or was bullied by another camper, n = 3), one mother

stated that the study "annoyed her," and one mother was never reached after the initial

interview.

Differences between those mothers who completed only one interview versus two

or more interviews were examined using t-test and chi-square analyses. Significant

differences were found with those who dropped after the pre-camp interview reporting

less camp experience, t (177) = 2.47, p < .05, lower income, t (153) = 2.11, p < .05,

greater percentage of time as the primary caretaker, t (177) = -2.58, p < .05, lower

frequency of caregiving duties, t (177) = 2.39, p < .05, and lower subjective caregiving

stress, t (177) = 3.72, p < .01. Means and standard deviations are reported in Table 3. In

addition, of those who dropped, 78% were minority children, Fisher's exact test, p < .05.


Structured Telephone Interviews

Participants completed four structured interviews by telephone: (1) Pre-camp -

three to four weeks prior to the start of the camp session, (2) During camp during the

final two full days of the camp session (the 5th and 6th day), (3) Post-camp one to two

weeks after the end of camp, and (4) Follow-up four to five weeks after the end of

camp. These interviews were conducted by a graduate student and an undergraduate

student, both of whom received extensive training related to the study's purpose, how to

respond to different responses given by mothers, and disease specific information that

would ensure their ability to ask appropriate questions. In addition, all telephone calls

were tape recorded (with the permission of the mothers) for quality assurance purposes.







27
Tapes were randomly selected for review, allowing for feedback and additional training

to be provided for the interviewers.

The telephone interview was conducted using a scripted program in Microsoft

Access. This program ensured that the data were collected and entered appropriately.

Prompts were provided to the interviewers, enabling them to ask the questions in the

same manner. Finally, the program contained decision trees that proceeded based on the

mother's response, again ensuring that the interviewers asked all of the relevant questions

for each interview. By entering the data directly into the computer during the interview,

data entry errors were significantly reduced. If there was a technical problem, data could

later be retrieved from the tape recordings and re-entered into the computer.

Due to the large geographic region included in this study (the state of Florida),

telephone interviews were selected as a more feasible methodology compared to face-to-

face interviews or mailed, self-administered questionnaires. Multiple studies have found

that response rates are similar for telephone and face-to-face interviews, while usually

achieving higher response rates and more complete responses than mailed questionnaires

(Aneshensel, Frerichs, Clark, & Yokopenic, 1982; McCormick, Workman-Daniels,

Brooks-Gunn, & Peckham, 1993; O'Toole, Battistutta, Long, & Crouch, 1986). In

addition, the quality of data gathered by telephone interviews is comparable to face-to-

face interviews in terms of reliability and validity (Bauman, 1993; McCormick et al.,

1993; O'Toole et al., 1986), while telephone responses have been found to have fewer

omissions and be more reliable and valid than mailed questionnaires (Fourier & Kovess,

1993; Hinkle & King, 1978; O'Toole et al., 1986). Telephone interviews have been

reported as sensitive to detecting depression using both the Center for Epidemiological







28
Studies Depression Scale (CES-D; Aneshensel et al., 1982) and Diagnostic Interview

Schedule (Wells, Burnam, Leake, & Robins, 1988). Finally, telephone interviews have

successfully been used with sensitive populations (Fenig, Levav, Kohn, & Yelin, 1993)

and when asking personal and/or health related questions (McCormick et al., 1993;

O'Toole et al., 1986; Weeks, Kulka, Lessler, & Whitmore, 1983).


Structured Interview and Questionnaires

Demographics

Demographic information was obtained from the camp application or the first

interview. Demographic variables related to the child included age, sex, race, illness

diagnosis, time since diagnosis (disease duration), and previous camp experience at

BCGC. Maternal demographic variables included age, race, marital status, employment

status, number of other children in the home, years of education, and annual household

income. Finally, mothers were asked to estimate the percent of time they considered

themselves to be the primary caregiver.

Objective Stress

A structured interview assessed the objective stress related to caring for a child

with a chronic physical condition, including medications, home medical procedures,

medical care outside of home, and nighttime medical care. Objective stress was assessed

during the pre-camp, post-camp, and follow-up interviews. Objective stress was not

assessed while the child was at camp (during-camp interview). As the child was not in

the home during camp, the mother was not required to care for the child's medical needs,

thus objective stress was assumed to be zero.







29
All questions about objective stress asked the mother to describe the frequency

and duration for each area of medical care. As medication regimens and home care

procedures can be complex, we focused only on what mothers were required to do

yesterday, assuming this was an accurate reflection of what they did every day.

Interviews focusing on specific behaviors during a time-limited period (e.g., previous 24

hours) has been shown to be an effective way to assess behavior (Johnson, 1995;

Quittner, Opipari, Regoli, Jacobsen, & Eigen, 1992). As medical appointments and

nighttime care are less frequent caregiving events, mothers were asked to recall these

events for the previous week.

The following is an example of how the interview was conducted. A mother was

asked if her child took medications yesterday. If she said yes, she was asked how many

times (frequency). Then, for each time the mother was involved with giving the child

medications, she was asked how long did it take to give the medications (duration).

Composite scores for both the frequency and the duration of caregiving activities were

calculated using all four areas of medical care (a detailed description of the composite

scores calculation is presented in the results section).

Medications and home medical procedures were assessed in terms of the mothers'

involvement with the child's medication regimen and/or medical procedures (e.g.,

flushing a central line or peak flow meter monitoring). Medical care outside the home

included doctor appointments, medical treatments like chemotherapy or physical therapy,

waiting room time, and time spent traveling to and from such medical care. Nighttime

care was measured in terms of disruptions to a mother's sleep in order to care for her







30
child's medical needs, and included time spent caring for the child and time required to

fall asleep again. See Appendix A for a complete outline of the interview.

Subjective Stress

A structured interview also assessed subjective stress in terms of maternal

perception of caregiver stress (see Appendix A). Caregiving stress questions asked

mothers to rate their perceived stress level associated with each of the caregiving tasks

(medications, home care procedures, medical appointments, and nighttime care). For

example, after the mother estimated the amount of time required to give her child

medications, she was asked how stressful that situation was for her on a 4-point likert

scale, with zero being not at all stressful and four being extremely stressful. Subjective

stress was measured as part of the pre-camp, post-camp, and follow-up interviews.

Similar to objective stress, since the mother was not required to care for her child while

the child was at camp, subjective stress was assumed to be zero at the during-camp

interview and was not measured.

Outcomes

The following four measures were given as part of the structured telephone

interview at all four assessments (pre-camp, during camp, post-camp, and follow-up).

Overload

Four items, developed by Pearlin et al. (1990), were used to assess caregiver

overload in terms of burnout, fatigue, and the relentless nature of caring for a person with

a chronic condition. This measure, which has previously been used with caregivers of

patients with Alzheimer's disease, was administered during all four interviews. In this

study, we examined the reliability at each interview time and the coefficient alphas







31
ranged from .75 to .83, with an average of .78, demonstrating adequate reliability. See

Appendix B for scale items.

Depression-Anxiety

Six items, a subset of a 22-item screening inventory (Crandell & Dohrenwend,

1967), was used to ask mothers about nervousness, low spirits, feelings of isolation,

restlessness, worry, and the inability to take care of things because "you can't get going"

(Breslau et al., 1982). This scale was administered at all four interviews. Internal

consistency was adequate for this sample, with the reliabilities from each interview

ranging from .64 to .77, with an average coefficient alpha of .72. Items are presented in

Appendix B

Maternal Distress

A seven item scale, developed by Pearlin and Schooler (1978), assessed the

distress directly related to being a parent during all four interviews. This measure has

been used with mothers of children with CF, cerebral palsy, spina bifida, and physical

handicaps (Breslau et al., 1982), and demonstrated good reliability in this study (alphas

range .82 to .89, average alpha = .86). See Appendix B for scale items.

Recreational Activities

The Recreational Activities Checklist (RAC), designed for this study, is based on

the Interactions with Environment Checklist (Smith, Gotlieb, Gurwitch, & Blotcky, 1987)

and the Daily Activity Log (Quittner et al., 1992). The scale consisted of 25 leisure time

and non-work-related activities, with the subject responding to the amount of time they

participated in these activities during the previous week. Time spent in recreational

activities was assessed during all four interviews. Scores were obtained by summing the

amount of time spent in recreational activities. See Appendix C for scale items.








Time Demands

The Excess Time Demands Scale is a 14-item questionnaire that measures the

degree to which caring for a child with a disability interferes with a mother's time for

herself and others (Holroyd, 1987). Mothers respond to questions in a true/false format.

In the current study, this measure demonstrated adequate reliability (pre-camp alpha = .71

and follow-up alpha = .75). Due to the fact that this scale measures more stable

phenomenon (e.g., I have had to give up a job to care for my child), it was not expected

to change after a short period of time (i.e., one week). Thus the Time Demands Scale

was given only as part of the first (pre-camp) and last (follow-up) structured telephone

interview. See Appendix B for scale items.











Table 1: Demographic Characteristics of the Study Sample
Percent Mean


CHILD VARIABLES
Child Sex
Male
Female
Child Race
Caucasian
African-American
Hispanic
Other
Illness Group
Cancer on Treatment
Cancer Not on Treatment
Epilepsy
Kidney
Asthma
Child's Current Age (years)
Disease Duration (years)
< 2 years
> 2 years
Camp Experience (years)

MOTHER VARIABLES
Matemal Race
Caucasian
African-American
Hispanic
Other
Marital Status
Married
Divorced
Single
Widow
Other
Employed
Yes
No
Number of Other Children in Home
Maternal Age
Maternal Education (years)
Annual Household Income
Caretaker Time (percent)


48
52

68.2
17.3
7.8
6.7

12.8
15.6
28.5
15.6
27.4


83.2
16.8


11.65
6.8


0.75


SD Range


2.56
4.4


0.99


6.5 17
0.35 17


0-4


72.6
17.3
8.4
1.7

66.5
11.2
19.0
2.2
1.1

65.4
34.6


1.01
39.21
13.9
50,477
84.32


0.69
6.28
2.32
49,230
17.27


0-3
26.5-55.3
5 -20
3000 400,000
45- 100











Table 2: Means, Standard Deviations, and Significant
Groups and Demorahic Variables


Group Differences for Illness


Mean SD Range


Child's Age (years)
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment

Duration of Disease (years)
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment

Previous Camp Experience (years)
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment

Maternal Age (years)
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment


9.79a,b,c
13.23 'd
12.57,e
10.47'd,e,
11.46'f



2.61 a,b,c
8 .99a,d
8.2 1b,e
7.64c"f
3.4 1d,e,f


0.52
1.02a
0.89
0.37 a,b
1.00b


35.52a'b
40.88a
40.29b
39.12
38.28


1.95
2.51
2.36
1.37
2.56


2.33
4.63
4.92
2.91
2.33


.73
1.30
1.07
.53
.86


4.91
7.04
6.23
6.13
4.85


6.5 15.0
8.2-17.0
7.6-16.2
7.6- 12.7
6.5 17.0


.35-8.6
.42-17.0
.51 16.2
1.7- 12.7
.51 10.77


0-2
0-4
0-4
0-2
0-2


28.2 49.6
28.3 54.8
27.7 52.5
26.5 55.3
27.3-46.5


Note. Means sharing superscripts within each variable are significantly different (p <
.05).











Table 3: Mean and Standard Deviations for Attrition and Missing Data
Mean SD Range

Camp Experience (years)
Completed two or more interviews 0.80 1.02 0-4
Completed only pre-camp interview 0.39 .61 0- 1

Annual Household Income
Completed two or more interviews 52,171 51,033 3,000 400,000
Completed only pre-camp interview 35,768 25,771 6,000 88,000

Caretaker Time (percent)
Completed two or more interviews 83.43 17.47 45- 100
Completed only pre-camp interview 92.22 13.20 80- 100

Caregiving Frequency
Completed two or more interviews 16.30 15.02 0-99
Completed only pre-camp interview 10.39 9.22 1 -28

Caregiving Stress
Completed two or more interviews 9.22 16.56 0-92
Completed only pre-camp interview 2.89 4.63 0 -14


Note. Means for each variable significantly different (P < .05).
For all variables except Annual Household Income, n = 161 for completed two or more
interviews and n = 179 for completed only pre-camp interview.
Due to missing data, Annual Household Income n = 139 for completed two or more
interviews and n = 155 for completed only pre-camp interview.














RESULTS

All analyses were conducted using SPSS 8.0 statistical software package.


Preliminary Analyses

Objective Stress Calculations and Related Descriptive Statistics

Two composite scores of objective stress were derived from the structured

interview: caregiving frequency and caregiving duration.

Caregiving Frequency. Medication and in-home medical care were measured in

terms of frequency per day, while out-of-home medical care and nighttime care were

measured in terms of frequency per week. Thus the following equation was used to

create a composite score for each subject, with total caregiving frequency reported as

number of caregiving activities performed per week:

Weekly Caregiving Freuency = 7(frequency of daily medications) + 7(frequency
of daily in-home care activities) + frequency of out-of-home care activities +
frequency of nighttime care

The caregiving frequency composite score means and standard deviations for the

total sample and each illness group are presented in Table 4. On average, the mothers in

this study engaged in almost 16 medically related caregiving activities per week, yet there

was considerable variability based on the child's illness. For example, mothers of

children with kidney disorders performed an average of 24 caregiving activities per week

while mothers of children with cancer not on treatment performed an average of five to

six caregiving activities per week.







37
A one-way ANOVA was conducted to compare illness group differences in

caregiving frequency. Significant between illness group differences were found for

caregiving frequency, F (4, 174) = 6.42, p < .01. Post-hoc analyses using the Tukey HSD

test suggest that mothers of children with cancer not on treatment participate in

significantly fewer caregiving activities (M = 5.50) than mothers of the other illness

groups (Ms ranged from 15.82 to 24.00).

Caregiving Duration. Medication and in-home medical care were measured in

terms of minutes per day, while out-of-home medical care and nighttime care were

measured in terms of minutes per week. A composite score for caregiving duration per

week was calculated using the following equation, with total caregiving duration reported

as hours per week:

Weekly Caregiving Duration = (7(l duration of daily medications) + 7(Y duration
of daily in-home care activities) + I duration of out-of-home activities + I
duration of driving time round-trip for out-of-home activities + Z duration of time
caring for child during night + E duration of time to fall back asleep after caring
for child during night) / 60

The weekly duration composite score means and standard deviations for the total

sample and each illness group are presented in Table 4. On average, mothers were

spending approximately three hours per week on medically related caregiving activities.

The range was from less than two hours for mothers of children with epilepsy to five and

a half hours for mothers of children with cancer on treatment.

A one-way ANOVA was conducted to compare illness group differences in

caregiving duration. A significant between illness group difference was found for

caregiving duration, F (4, 174) = 5.23, p < .01. Post-hoc analyses using the Tukey HSD

suggested that caregiving duration was significantly shorter for mothers of children with







38
epilepsy (M = 1.77) and cancer not on treatment (M = 2.14) than for mothers of children

with cancer on treatment (M = 5.55) or kidney disorders (M = 5.37). Significant

differences are indicated in Table 4.

Caregiving frequency and caregiving duration were significantly correlated (r =

.50). However, these two variables are believed to represent different concepts in terms

of caregiver burden, thus they were not combined as a single indicator of objective stress

in this study.

Subjective Stress Calculation and Related Descriptive Statistics

During the structured interview, mothers rated how stressful each caregiving

activity was for them. A composite score for the amount of stress related to caregiving

was calculated using the following equation, which sums the stress values. This results in

a total stress score for the previous week:

Weekly Caregiving Stress = 7(l stress related to daily medications) + 7(l stress
related to daily in-home care activities) + I stress related out-of-home
activities/appointments + Z stress related to getting up to care for child during
night

The weekly caregiving stress composite score mean and standard deviations for

the total sample and for each illness group are presented in Table 4. Although mothers

engaged in approximately 16 caregiving activities which required approximately three

hours per week, their average stress level for the previous week was less than nine, which

reflects the fact that mothers reported 59% of their caregiving activities as "not at all

stressful" (stress rating of zero). When examining each of caregiving areas, medications

and home care procedures were reported as "not at all stressful" more often than

nighttime care (see Table 5).







39
A one-way ANOVA was conducted comparing average caregiving stress for the

illness groups. Significant differences in caregiving stress were found for the illness

groups, F (4, 174) = 3.72, p <.01. Post-hoc analyses, using the Tukey HSD test, indicate

that the mothers of children with epilepsy (M = 3.20) reported significantly less stress

related to caregiving activities than mothers of children with cancer on treatment (M =

14.22), kidney disorders (M = 12.86), or asthma (M = 11.37). Mother of children with

cancer not on treatment (M = 4.64) reported significantly less subjective stress than

mothers of children with cancer on treatment and kidney disorders. Significant

differences are indicated in Table 4.

Calculation of Outcome Variables and Related Descriptive Statistics

Overload

A total overload score was calculated by summing the responses on this scale (see

Appendix B). A higher score indicates a higher level of overload in terms of burnout and

fatigue related to caregiving.

Welch's t-tests, which correct for unequal sample sizes, were conducted

comparing the means of the current sample with a normative population of caregivers of

Alzheimer's disease (Pearlin, Mullan, Semple, & Skaff, 1990). In general, mothers'

scores on the overload scale were consistent to the normative population of caregivers of

Alzheimer's disease (see Table 6). However, mothers of children with cancer on

treatment scored significantly higher than the normative group of AD caregivers,

suggesting that mothers of children with cancer on treatment experience greater feelings

of burnout and fatigue related to caregiving than do caregivers of AD patients.








Depression-Anxiety

Items on this measure were scored one for a yes response and zero for a no

response. On item two, "low spirits" and "very low spirits" were scored as one and "very

good sprits" and "good spirits" were scored as a zero. Scores were summed to obtain an

overall depression-anxiety score. Higher scores suggest more symptoms of depression

and anxiety.

Welch's t-tests were conducted comparing the mean depression-anxiety scores for

the current sample with a normative population of mothers of children without a chronic

illness and mothers of children with myelodysplasia, a chronic blood disorder that is

managed by transfusions and antibiotics (Breslau, Staruch, & Mortimer, 1982). Mothers

in nearly all illness groups reported significantly greater depression-anxiety compared to

mothers of children without a chronic illness (see Table 6). Only mothers of children

with asthma did not. However, significant differences in depression-anxiety scores were

not found between the current sample and mothers of children with myelodysplasia.

Maternal Distress

A total maternal distress score was calculated by summing the responses on this

scale (see Appendix B). A higher score indicates a higher level of stress related to being

a parent.

Welch's t-tests were conducted comparing the mean maternal distress scores for

the current sample with a normative population of mothers of children without a chronic

illness and mothers of children with myelodysplasia (Breslau et al., 1982). Mothers in

the current study reported significantly higher maternal distress compared to a normative

population of mothers whose children do not have a chronic illness (see Table 6).







41
However, maternal distress scores for mothers in the current study were not significantly

different from mothers of children with myelodysplasia.

Relationship Between the Psychological Distress Measures. Pearson correlations

were used to examine the relationship between the three measures of psychological

distress (overload, depression-anxiety, maternal distress). Overload correlated

moderately with both depression-anxiety (r = .44) and maternal distress (r = .48), while

there was a stronger correlation between depression-anxiety and maternal distress (r =

.64). However, an examination of the individual items for each of these scales suggests

that they tap different concepts (see Appendix B). Consequently, each was treated as a

separate outcome variable. The analyses were also run combining the measures into a

single indicator of distress; no additional effects emerged and several of the effects found

using the individual measures were lost. Therefore, the analyses using each measure as

an independent outcome variable are reported here.

Recreational Activities Checklist (RAC)

The RAC yielded a duration score by summing the amount of time (number of

total hours) subjects spent in recreational activities during the previous week. Mothers

spent an average of 36 hours per week in recreational activities. However, there was

significant variability in the amount of time spent in recreational activities.

Time Demands

Items on this measure were scored one for a true response and zero for a false

response. Reverse scored items (#s 3, 5, 8, 13) were scored one for a false response and

zero for a true response. Scores were summed to obtain an overall time demands score,

with higher scores suggesting strong maternal perceptions that the child's illness

interferes with a mother's time for herself and her family.







42
T-tests were conducted comparing the mean time demands scores for the current

sample with a normative population of mothers of children without a chronic illness and

mothers of children with cystic fibrosis (Quittner et al., 1992). Mothers of children with

cancer on treatment, epilepsy, and kidney disease reported significantly greater time

demands than both mothers of children without a chronic illness as well as mothers of

children with cystic fibrosis (see Table 6).


Cross-Sectional Analyses (Pre-Cam)

Approach to Model Testing. Each part of the proposed caregiver burden model

was tested using hierarchical multiple regression analyses. This approach allowed us to

examine the predictors of each part of the model. For all analyses, the first step included

all demographic variables (child's sex, child's age, disease duration, previous camp

experience, maternal age, maternal marital status, maternal employment status, number of

other children in the home, percent time mother served as primary caretaker, maternal

race, maternal education, annual household income). Because the large number of

demographic variables introduces multicollinearity, any variable with a p-value of .30 or

less was retained for the next step.

Because the literature suggests that the psychosocial effects of the diagnosis of a

chronic illness can last for up to two years (Grey, Lipman, Cameron, & Thurber, 1997;

Jacobson et al., 1990; Kovacs et al., 1990; Phipps, Fairclough, & Mulhern, 1995), we

elected to treat disease duration as a two-level ordinal variable (disease duration < 2 years

versus > 2 years). Although two-level ordinal effects are presented below, we did re-

examine the data using disease duration as a continuous variable; no additional disease

duration effects emerged and some of the two-level ordinal effects were lost.







43
Maternal race was initially entered as separate categorical variables (African-

American, Hispanic, Asian-American, other) with Caucasian serving as the comparison

group. However, other than African-American, no other race was a significant predictor

of any variable. Thus race was collapsed into two variables, African-American and

Minority, with Caucasian serving as the comparison group for both variables.

The second step for all analyses consisted of the illness groups, which were

entered as separate categorical variables, with cancer on treatment serving as the

comparison group. Again, any variable with a significance level less than .30 was

retained for the next step.

Further steps depended on the hypothesis being tested and are described below.

Additional steps were necessary to eliminate variables that were not significant as well as

enter the independent variables being tested. The statistical values for the regression

models which best predicted the dependent variable are reported in Tables 7-13.

1. Demographic variables will predict objective stress.

For this analysis, the frequency and duration of caregiving activities served as the

dependent variable in two separate analyses. Child's age, illness group, disease duration,

and single parent status were expected to predict objective stress (frequency and duration

of caregiving activities).

For the caregiving frequency analysis, demographic and illness group variables

were entered in the first two steps, and the third step was used to refine the model.

Variables were eliminated from Step 3 if p> .05 (see Table 7). Illness group was

confirmed to be a significant predictor of caregiving frequency, with mothers in all illness

groups engaging in more frequent caregiving tasks than mothers of children with cancer







44
not on treatment (see Table 4 for means). Child's sex was an unexpected predictor of

caregiving frequency, with mothers of male children performing more caregiving tasks

(M = 18.5) than mothers of female children (M = 13.2).

For the caregiving duration analysis, demographics and illness group variables

were entered in the first two steps. Steps 3-6 were used to refine the model. Because the

large number of variables in Step 3 introduces multicollinearity, values were retained if p

<. 10. For Steps 4 and 5 only statistically significant variables (p < .05) were retained

(see Table 8)

As expected, illness group predicted caregiving duration, with mothers of children

with cancer on treatment (M = 5.6) and mothers of children with kidney disease (M =

5.4) spending more hours in caregiving tasks than mothers of children with cancer not on

treatment M = 2.1). Child's sex was an unexpected predictor of duration, with mothers

of male children spending more hours in caregiving (M = 3.9) than mothers of female

children (M = 2.4).

2. Greater objective stress will be related to greater subjective stress.

As greater objective stress places an increased demand on a mother's time and

attention, it was expected that mothers who reported a greater frequency and duration of

objective stress would also report greater subjective stress (perception of stress related to

caregiving activities). Thus subjective stress was entered as the dependent variable in

this model, with frequency and duration of objective stress entered as independent

variables in the fourth step (the third step was used to refine demographic and illness

group predictors with variables eliminated if p < .10). The final model accounted for

26% of the variance (see Table 9). As expected, mothers who engaged in more







45
caregiving activities and spent more time caring for their child perceived greater stress

related to caregiving. In addition, mothers of children with cancer on treatment (M =

14.2) and mothers of children with asthma (M = 11.4) reported more caregiving stress

than mothers of children of cancer not on treatment (M = 4.64). Finally, maternal race

was an unexpected predictor of caregiving stress, with African-American mothers

reported more caregiving stress (M = 15.1) than Caucasian mothers (M = 7.2).

3. Greater objective stress will predict greater negative outcomes.

The proposed caregiver burden model suggests that objective stress has a direct

effect on outcomes. Thus, it was expected that mothers who reported greater objective

stress (frequency and duration of caregiving activities) would also report more overload,

more depression-anxiety, more maternal distress, and less recreational activity time.

Thus the outcome variables (overload, depression-anxiety, maternal distress, and

recreational activity time) were entered as the dependent variable in four separate

regression models, with objective stress (frequency and duration of caregiving activities)

entered as independent variables in the third step for each model (see Tables 10-13). For

some models, a fourth and fifth step were necessary to eliminate variables that were not

significant. Elimination criteria are described for each variable.

Neither caregiving frequency nor caregiving duration predicted overload scores

(see Table 10). For depression-anxiety, using the R < .30 criterion for the elimination of

variables (due to the large number of variables), caregiving duration was still considered

a possible predictor of depression-anxiety in Step 3. However, when entered into Step 4,

caregiving duration remained a non-significant predictor (see Table 11). For maternal







46
distress, caregiving frequency was carried into Step 4 (see Table 12). However, neither

caregiving frequency nor caregiving duration predicted maternal distress.

For recreational activity time, a marginal effect (R = .08) was found, suggesting

that caregiving frequency approached significance as a predictor of the amount of time

spent in recreational activities. Mothers who reported performing fewer caregiving

activities spent more time in recreational activities (see Table 13). Maternal employment

status and disease group were unexpected significant predictors of recreational activity

time in the final objective stress model. Mothers who were not employed spent more

hours during the previous week in recreational activities (M = 41.3) than employed

mothers (M = 33.6). Mothers of children with asthma spent more hours during the

previous week in recreational activities (M = 44.1) than mothers of children from the

other illness groups (Ms range 28.2 37.8).

4. Greater subjective stress will predict greater negative outcomes.

The proposed caregiver burden model suggests that an indirect effect occurs

through the impact of subjective stress on outcomes. Therefore, it was expected that

mothers who reported greater stress related to caregiving activities (caregiving stress)

would also reporting greater psychological distress and less time spent in recreational

activities. Thus, the outcome variables (overload, depression-anxiety, maternal distress,

and recreational activity time) were entered as the dependent variable in separate models,

with caregiving stress (perception of stress related to caregiving activities) entered as the

independent variable in each regression model.

Caregiving stress was entered in Step 4 for overload, along with the demographic

variables that were retained from Steps 1 and 2. Variables were retained for Step 5 if p <







47
.10 and for Step 6 if p < .05 (see Table 10). The final overload model accounted for 9%

of the variance. As expected, caregiving stress significantly predicted overload,

suggesting that mothers who perceived greater levels of stress directly related to

caregiving activities also perceived greater feelings of overload. In addition to caregiving

stress, the final model for overload also included the percent of time mothers perceived

themselves to be the primary caretaker, with mothers who reported a higher percent of

caretaker time also reporting more overload.

Caregiving stress was entered in the fifth step of the depression-anxiety analysis,

with only variables that were statistically significant (p < .05) retained for the next step.

The final model for depression-anxiety scores accounted for 12% of the variance (see

Table 11). Caregiving stress significantly predicted depression-anxiety scores,

supporting the hypothesis and suggesting that mothers who perceived greater stress

related to caregiving activities also reported greater depression-anxiety. Unexpected

predictors of depression-anxiety included maternal employment status and maternal race.

Mothers who were not currently employed reported greater depression-anxiety scores (M

= 2.4) than mothers who were currently employed (M = 1.9), while African-American

mothers reported greater depression-anxiety scores (M = 2.6) than Caucasian mothers (4

= 1.9).

For the maternal distress analysis (Table 12), caregiving stress was entered in

Step 5, with variables retained for Step 6 using the more generous cutoff of p < .30. As

multiple variables approached significance in Step 6, variables were retained for Step 7 if

p < .05. Only statistically significant variables (p < .05) were retained in additional steps.

Although maternal African-American race was not included in the final model, it should







48
be noted that in Step 8 this variable continued to approach significance. In the final

model for maternal distress, accounting for 13.5% of the variance, caregiving stress

predicted matemal distress, as expected. Illness group was an unexpected predictor of

maternal distress, with mothers of children with asthma reporting lower distress related to

being a parent (M = 14.6) than mothers of children in the remaining illness groups (Ms

range 16 17.5).

Caregiving stress was entered in Step 6 of the recreational activity time analysis.

As caregiving stress approached significance (p = .09) it was retained for the next step,

while variables with a p-value greater than. 10 were eliminated. The final model,

accounting for 6% of the variance, is presented in Table 13. Along with subjective stress,

time spent in recreational activities was also predicted by employment status and illness

group. Mothers who were not employed spent more hours during the previous week in

recreational activities (M = 41.3) than employed mothers (M = 33.6), while mothers of

children with asthma spent more hours during the previous week in recreational activities

(M = 44.1) than mothers of children from the other illness groups (Ms range 28.2 37.8).

5. Subjective stress mediates the relationship between objective stress and outcomes

In order to test the mediator model, there needed to be a significant relationship

between the components of the model (objective stress predicted greater negative

outcomes, objective stress predicted greater subjective stress, and subjective stress

predicted greater negative outcomes). This criterion was not met for any of the outcome

measures. However, as there was a trend suggesting that caregiving frequency predicted

time spent in recreational activities, we proceeded to test the mediator hypothesis.

Recreational activity time served as the dependent variable in the mediator model, with







49
frequency of caregiving tasks, an objective stressor, entered first. Next, subjective stress

(perception of stress related to caregiving) was added to the regression equation. The

mediator model would have been supported if the regression coefficients for the objective

stress (frequency) decreased once subjective stress was added to the model.

However, as seen in Table 13 (Step 8), there was no strong support for the

mediator model. When caregiving stress was added to the model, both caregiving

frequency and caregiving stress became non-significant due to multicollinearity.


Longitudinal Analyses

Repeated measures ANCOVAs were used to examine changes in objective stress,

subjective stress, and outcome variables over time. For all analyses, illness group was

the between subjects variable while time was the repeated measure variable. As

significant differences between illness groups were found for child's age, disease

duration, previous camp experience, and maternal age, these variables were entered as

covariates in each ANCOVA. Child's age was a significant covariate in the maternal

distress ANCOVA. However, child's age did not substantially improve the within group

variance (MSw = 8.4 with the covariate, MS, = 8.6 without the covariate), therefore the

covariate was elimiated from the maternal distress analysis (Hair, Anderson, Tatham, &

Black, 1998). No significant relationships between the covariates and the dependent

variables were found for the rest of the analyses, thus the covariates were not used and

repeated measures ANOVAs were performed (Weinfart, 1995). The final ANOVA

models can be seen in Table 14, with adjusted means and standard deviations reported in

Table 15.

1. Objective stress, which is assumed to decrease while the child is at camp, will remain
at baseline levels one week and one month post-camp.







50

As respite care is only a short term break from caregiving, and the child's illness

required caregiving after camp, objective stress was not expected to change after the child

returned home from camp. A 5 (illness group) x 3 (time) mixed-model ANOVA

examined caregiving frequency for the illness groups over time (see Table 14). Contrary

to the hypothesis, a significant interaction between illness group and time was found for

caregiving frequency, F (8, 312) = 2.24, p = .03, suggesting that caregiving frequency

changed over time differently for each of the illness groups (see Table 15 for means).

Notably, caregiving frequency increased for mothers of children with asthma while it

decreased for the other illness groups.

A 5 (illness group) x 2 (time) mixed-model ANOVA was conducted comparing

caregiving duration between the illness groups over time (see Table 14). As expected,

there was no significant main effect of time for duration of caregiving activities, F (2,

312) = .94, n.s. However, a significant main effect was found for illness group, F (4,

156) = 7.43, p < .01. Post-hoc analyses using Tukey's HSD found that regardless of

time, mothers of children with cancer on treatment spent more hours in caregiving

activities than mothers of children with epilepsy, asthma, or cancer not on treatment (see

Table 15 for means). Mothers of children with kidney disorders spent more time in

caregiving activities than mothers of children with epilepsy regardless of time.

2. Removing the objective stress related to caring for a child with a chronic illness will
reduce subjective stress after camp, with changes maintained at least one week post-
camp, and up to one month post-camp.

Although objective stress was not expected to change, it was hypothesized that a

week of respite care would decrease mothers' perceptions of stress related to caregiving

after her child returned home from camp. To examine this hypothesis, a 5 (illness group)







51
x 2 (time) mixed-model ANOVA was conducted (see Table 14). Contrary to the

hypothesis a main effect for time was not found, F (4, 156) = .84, n.s. However, a

significant main effect for illness group was found, F (4, 156) = 4.08, p < .01. Post-hoc

analyses using Tukey's HSD suggest that mothers of children with kidney disorders and

asthma perceive significantly greater stress than mothers of children with epilepsy,

regardless of time.

3. Removing the objective stress related to caring for a child with a chronic illness will
reduce psychological distress during camp, with changes maintained at least one week
post-camp, and up to one month post-camp.

A 5 (group) x 4 (time) mixed-model ANOVA was conducted to examine group

differences over time for overload (see Table 14). A significant interaction between

illness group and time was found for overload, F (12, 414) = 1.88, p = .04, suggesting

that reported feelings of overload related to caregiving changed over time differently for

each illness group. As seen in Figure 2, overload decreased for all groups while the child

was at camp, with reported overload increasing again one week after the child returned

home. However, with the exception of the kidney disorders group, overload remained

below baseline levels both one week and one month after the child returned home from

camp (see Table 15 for means).

A main effect for time was also found for overload, F (3, 414) = 24.61, p < .01.

Paired t-tests comparing all time points, collapsed across group, indicate that overload

was significantly lower during camp, and remained below baseline levels one week and

one month after camp (see Table 16). This suggests that camp provided respite care by

reducing the feelings of overload that result from being a caregiver while the child was a

camp, with the effect lasting for up to one month after the child returned home from

camp.







52
A 5 (group) x 4 (time) mixed-model ANOVA was conducted to examine group

differences over time for depression-anxiety (see Table 14). As expected, a significant

main effect for time was found for depression-anxiety, F (3, 414) = 4.95, p < .01 (see

Figure 3). Paired t-tests comparing all time points, collapsed across group, indicate that

depression-anxiety was significantly lower at the during camp interview (M = 1.63) than

the pre-camp interview (M = 2.09). However, this change in depression-anxiety did not

remain significantly below baseline levels one week or one month after camp ended (see

Table 17). The reduction in depression-anxiety scores during camp supports the

hypothesis that camp provides respite care, although the benefit of the respite care

(reducing depression-anxiety) was not maintained after the child returns home from

camp.

A 5 (group) x 4 (time) mixed-model ANOVA was conducted to examine group

differences over time for maternal distress (see Table 14). A significant interaction

between illness group and time was found for maternal distress, F (12, 414) = 3.12, p <

.01, suggesting that maternal distress changed over time differently for each illness

group. As seen in Figure 4, this is most notable for the cancer not on treatment group,

whose reported levels of maternal distress significantly decreased while the child was at

camp, with this change maintained one week and one month after the child returned

home from camp. In addition, although the kidney disorders group reported levels of

maternal distress decreased while the child was at camp, distress increased to just above

baseline level one week post-camp and maintained at this level one month post camp (see

Table 15 for means). Respite care appears to provide an immediate effect for all groups,







53
with scores below baseline up to one month after camp for mothers of children with

cancer, both on and off treatment.

There was a significant interaction between time and illness group for time spent

in recreational activities, F (12, 414) = 1.77, p = .05, again suggesting that the amount of

time spent in recreational activities varied over time for each illness group. As expected,

time spent in recreational activities increased during camp, but only for mothers of

children with cancer on treatment and kidney disease. As seen in Figure 5, over time,

each illness group's time spent in recreational activities changed in a different pattern.

For example, one week after camp, mothers of children with kidney disease reported a

sharp decline in time, returning to above baseline levels one month after camp. On the

other hand, mothers of children with epilepsy spent less time in activities during and one

week after camp, and remained below baseline levels one month after camp ended.

Although respite care appears to effect time spent in recreational activities, this effect

differs for each illness group, with some mothers engaging in fewer activities during

camp while others spent more time in activities while their child was away at camp.


Longitudinal Analyses by Illness Group

Significant main effects of illness group were found for each of the three

caregiver burden variables (caregiving frequency, caregiving duration, and caregiving

stress), suggesting that caregiver burden differs by illness group. In addition, significant

interactions between illness groups and time were found for overload, maternal distress,

and recreational activity time. However, the benefits of respite care appear to differ

depending on the child's illness, and are inconsistent for the different measures.







54
Therefore, it is important to examine the pattern of results and how the variables relate to

one another over time for each illness group.

Two doubly multivariate repeated measures MANOVAs were performed for each

illness group: a 3 (time) x 3 (caregiver burden variables) MANOVA was conducted to

examine the relationship between caregiving frequency, caregiving duration, and

caregiving stress; a 4 (time) x 4 (outcome variables) MANOVA was performed to

examine the relationship between overload, depression-anxiety, maternal distress and

recreational activity time.

However, as all of the measures have different scales, in order to be able to

examine the pattern of results, each of the seven variables were standardized into z-scores

(for each variable, M = 0, SD = 1). For each variable, this was accomplished by using

the pre-camp mean and standard deviation for only one illness group. For example,

frequency scores for the asthma group were standardized using the pre-camp frequency

mean and standard deviation for the asthma group. This approach also allowed for a

visual examination of the relationship between changes in the caregiver burden variables

and the outcome variables for each disease group. MANOVAs are presented in Table 18

and adjusted means and standard deviations are presented in Table 19.

Cancer on Treatment

A 3 (time) x 3 (caregiver burden variables) MANOVA found no significant

effects for mothers of children with cancer on treatment (see Table 18). However, power

is an issue for this group (n= 20) and we believed that the relationship between these

variables over time may be derived from an inspection of the means (see Figure 6).

These results suggest that although caregiving duration increased one week post-camp,

caregiving stress decreased one week post-camp.







55
For the outcome variables, a 4 (time) x 4 (outcome variables) MANOVA found a

significant main effect for both time, F (3, 15) = 3.83, p = .03 and outcome variables, F

(3, 15) = 4.58, p = .02. As seen in Figure 6, overload and depression-anxiety scores

decreased while the child was at camp, with both scores remaining below baseline levels

one week and one month after the child returned home from camp. However, maternal

distress increased while the child was at camp and then decreased to below baseline

levels one week and one month after camp. As expected, recreational activity time

increased while the child was at camp, with recreational activity time remaining above

baseline levels for up to one month after camp ended.

Epilepsy

A 3 (time) x 3 (caregiver burden variables) MANOVA found an interaction

between time and caregiver burden variables which approached significance, F (4, 42) =

2.25, p = .08. This suggests that the measures changed differently over time for mothers

of children with epilepsy. Contrary to the hypothesis that caregiving frequency and

duration would not change after camp, caregiving frequency was below baseline one

week after camp and remained below baseline up to one month after camp. Caregiving

duration was above baseline one week after camp and then returned to near baseline

levels one month after camp (see Figure 6). In addition, the related caregiving stress

increased one week after camp and maintained above baseline one month after camp.

A significant main effect for outcome variables was found for the 4 (time) x 4

(outcome variables) MANOVA, F (3, 40) = 8.12, R < .01, suggesting that in general the

outcome measures differ from one another. However, Figure 7 shows that the

psychological distress variables (overload, depression-anxiety, and maternal distress)

followed the expected pattern of change over time, decreasing while the child was at







56
camp, and remaining below baseline levels up to one month after camp. Although not

expected, recreational activity time also decreased during camp, and remained below

baseline levels up to one month after camp.

Kidney

No significant results were found for the 3 (time) x 3 (caregiver burden variables)

MANOVA (see Table 18). However, power is an issue for this group (n= 22), thus it is

important to inspect the means for a relationship between these variables over time.

Figure 8 demonstrates that caregiving frequency and duration was below baseline both

one week and one month after camp, while caregiving stress maintained one week after

camp and then decreased to below baseline one month after camp. However, these

changes are very small.

Similarly, no significant effects were found for the 4 (time) x 4 (outcome

variables) MANOVA (see Table 18). An examination of the means for the three

psychological distress variables (overload, depression-anxiety, and maternal distress)

indicates that all three variables decreased while the child was at camp, returning to near

baseline levels one week after camp. In addition, time spent in recreational activities

increased while the child was at camp, decreased one week after camp, and increased to

above baseline levels again one month after camp.

Asthma

No significant results were found for the 3 (time) x 3 (caregiver burden variables)

MANOVA (see Table 18). However, Figure 9 suggests that while caregiving frequency

increased one week and one month after camp, caregiving duration and caregiving stress

maintained near baseline levels over time.







57
A significant interaction between time and outcome variables was found for the 4

(time) x 4 (outcome variables) MANOVA, F (9, 33) = 8.12, R = .04, suggesting that the

outcome variables changed differently over time. Although overload decreased during

camp, the other psychological distress variables (depression-anxiety, maternal distress)

maintained, with depression-anxiety increasing above baseline one week and one month

after camp (see Figure 9). In addition, contrary to expectations, mothers spent less time

in recreational activities during camp, as well as one week and one month after camp

ended.

Cancer Not on Treatment

No significant effects were found for the 3 (time) x 3 (caregiver burden variables)

MANOVA (see Table 18). However, power is an issue for this group (n = 25). Thus the

means were inspected visually (see Table 19). Although caregiving frequency and

caregiving duration were above baseline one week after the child returned home from

camp, caregiving stress was below baseline levels one week after camp for mothers of

children with cancer not on treatment.

The interaction between time and outcome variables approached significance for

the 4 (time) x 4 (outcome variables) MANOVA, F (9, 13) = 2.53, p = .06, suggesting that

these variables changed differently over time. All three psychological distress variables

(overload, depression-anxiety, and maternal distress) were below baseline while the child

was at camp, with effects maintained one week after camp. In addition, the changes in

overload and maternal distress maintained one month after camp, while depression-

anxiety symptoms returned to baseline levels. Contrary to the hypothesis, time spent in

recreational activities decreased during camp, increased one week after camp, and

decreased again to below baseline levels one month after camp.







58
Additional Analyses

The benefits of respite care will generalize to more stable psychological phenomenon
(e.g., time demands).

A 2 (time) x 5 (group) one-way ANOVA was conducted to compare time

demands scores over time for the illness groups. A significant main effect of time was

found for time demands, F (1, 146) = 6.17, p = .01. As seen in Figure 11, the perception

that caregiving interfered with a mother's time for herself and her family was lower one

month after the child returned home from camp compared to one month before the child

went to camp. This result is most notable for mothers of children with kidney disorders

and cancer not on treatment.











Table 4: Means, Standard Deviations, and Significant Illness Group Differences for
Objective and Subjective Stress at Pre-Camp Assessment
Mean SD Range
OBJECTIVE STRESS
Caregiving Frequency (# events/week) 15.71 14.63 0-99
Cancer on Treatment 17.22a 12.06 1-52
Epilepsy 15.98b 10.05 0-45
Kidney 24.00c 24.27 0-99
Asthma 15.82' 12.16 0-45
Cancer Not on Treatment 5.50abcd 7.84 0-26

Caregiving Duration (# hours/week) 3.13 4.61 0- 29.15
Cancer on Treatment 5.55a'b 4.57 0- 18.00
Epilepsy 1.77axc 3.30 0-15.98
Kidney 5.37c' 7.12 0-29.15
Asthma 2.70 3.56 0-15.07
Cancer Not on Treatment 2.14bM 3.79 0- 16.65

SUBJECTIVE STRESS
Caregiving Stress (sum of stress/week) 8.59 15.88 0-92
Cancer on Treatment 14.22a'b 19.53 0-73
Epilepsy 3.20acd 7.36 0-29
Kidney 12.86c'e 22.24 0-78
Asthma 11.37d 17.07 0-92
Cancer Not on Treatment 4.64b'e 10.43 0-48
Note. Means sharing superscripts within each variable are significantly different (p <
.05).
Cancer on Treatment (n = 23), Epilepsy (n = 51), Kidney (n = 28), Asthma (n = 49),
Cancer Not on Treatment (n = 28)











Table 5: Percent Of Caregiving Activities Rated As Stressful
Activity and stress rating Percent
Medications
Not at all stressful (rating of 0) 68.7
Stressful (rating of 1-4 combined) 31.3

Home Care Procedures
Not at all stressful (rating of 0) 66.4
Stressful (rating of 1-4 combined) 33.6

Outside Care
Not at all stressful (rating of 0) 44.6
Stressful (rating of 1-4 combined) 55.4

Nighttime Care
Not at all stressful (rating of 0) 37.1
Stressful (rating of 1-4 combined) 62.9

Total Caregiving Stress
Not at all stressful (rating of 0) 59.3
Stressful (rating of 1-4 combined) 40.7











Table 6: Means and Standard Deviations for Illness Groups and Outcome Variables At
Pre-Camp Assessment


Overload
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment
Alzheimer 's Disease*

Depression-Anxiety
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment
No Illness**
Myelodysplasia**

Maternal Distress
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment
No Illness**
Myelodysplasia**


Mean
10.13
11.51a
10.17
10.00
9.82
9.57
10.2 a

2.08a
2.57 b
2.14c
2.46 d
1.63
1.96e
1.40abcde
1.85

16.10a
17.47b
16.33c
16. 00d
14.64e
17.14'
12.90adef
15.54


Recreational Activities (hrs/week)
Cancer on Treatment
Epilepsy
Kidney
Asthma
Cancer Not on Treatment


36.24
28.22
37.84
37.75
44.12
30.62


26.43
17.63
27.03
19.53
33.95
18.48


0.0- 154.5
1.0-66.5
2.2-124
2.5 95.58
2.0- 154.5
0.0-72.5


SD
3.13
2.92
3.14
2.71
3.10
3.60
3.09

1.55
1.56
1.66
1.64
1.36
1.37
1.30
1.46

4.51
5.01
4.18
4.67
4.24
4.56
4.50
4.69


Range
4-16
7-16
4-16
5-15
4-16
4-16


0-6
0-5
0-6
0-5
0-6
0-5



7-28
9-28
8-26
7-24
8-26
9-27








Table 6 Continued
Mean SD Range
Time Demands 8.59ac 2.60 2- 14
Cancer on Treatment 9.13bd 2.39 4- 13
Epilepsy 8.71cg 2.68 2-13
Kidney 9.34 2.60 3- 14
Asthma 8.07 2.03 4-13
Cancer Not on Treatment 8.07 3.29 2- 14
No illness*** 7.35abcd 2.59
Cystic Fibrosis*** 6.80efgh 2.30
Note. Means sharing superscripts within each variable are significantly different using the
Welch's correction for unequal variances (p < .05).
Cancer on Treatment (n = 23), Epilepsy (n = 51), Kidney (n = 28), Asthma (n = 49),
Cancer Not on Treatment (n = 28)
*Normative population from Pearlin et al. (1990), n = 555
**Normative population from Breslau et al. (1982), no illness n = 456, myelodysplasia
n= 82
***Normative population from Quittner et al. (1992), both groups n = 20











Table 7: Hierarchical Multiple Regression Steps: Predictors of Caregiving Frequency
Predictor B t p Adj. R2 F p
Step 1 Demographics < 0.01 0.95 0.51
Child's Sex -0.19 -2.26 0.03
Child's Age -0.03 -0.34 0.73
Disease Duration < 2 years 0.07 0.87 0.39
Camp Experience 0.10 1.05 0.30
Maternal Age 0.02 0.18 0.86
Marital Status -0.02 -0.22 0.83
Employed 0.04 0.47 0.64
# Other Children in Home 0.09 1.00 0.32
Caretaker Time -0.04 -0.39 0.70
Mother African-American 0.19 1.46 0.15
Mother Non-White Minority -0.12 -0.98 0.33
Maternal Education -0.10 -1.11 0.27
Annual Household Income 0.04 0.40 0.69
Step 2 Illness Group 0.14 4.56 < 0.01
Child's Sex -0.19 -2.64 0.01
Camp Experience 0.09 1.23 0.22
Mother African-American 0.04 0.58 0.57
Maternal Education -0.09 -1.22 0.23
Cancer on Treatment 0.28 3.13 < 0.01
Epilepsy 0.32 3.27 < 0.01
Kidney 0.46 5.06 < 0.01
Asthma 0.31 3.07 < 0.01
Step 3 0.14 5.18 < 0.01
Child's Sex -0.19 -2.66 0.01
Camp Experience 0.09 1.19 0.23
Maternal Education -0.09 -1.31 0.19
Cancer on Treatment 0.27 3.11 < 0.01
Epilepsy 0.32 3.26 < 0.01
Kidney 0.47 5.16 < 0.01
Asthma 0.31 3.11 < 0.01
Step 4 Final Model 0.14 6.67 < 0.01
Child's Sex -0.18 -2.61 0.01
Cancer On Treatment 0.26 2.99 < 0.01
Epilepsy 0.32 3.24 < 0.01
Kidney 0.46 5.10 < 0.01
Asthma 0.29 2.96 < 0.01
Note. Higher scores indicate greater caregiving frequency (greater # of caregiving
activities)







64
Table 7 Continued
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 8: Hierarchical Multiple Regression Steps: Predictors of Caregiving Duration
Predictor B t p Adj. R2 F p
Step 1 Demographics 0.05 1.56 0.10
Child's Sex -0.18 -2.15 0.03
Child's Age -0.12 -1.31 0.19
Disease Duration < 2 years 0.18 2.19 0.03
Camp Experience 0.08 0.83 0.41
Maternal Age 0.08 0.88 0.38
Marital Status 0.02 0.24 0.81
Employed -0.14 -1.60 0.11
# Other Children in Home 0.05 0.54 0.59
Caretaker Time 0.05 0.48 0.63
Mother African-American 0.25 2.00 0.05
Mother Non-White Minority -0.18 -1.50 0.14
Maternal Education 0.08 0.88 0.38
Annual Household Income 0.15 1.74 0.08
Step 2 Illness Group 0.15 3.44 <.001
Child's Sex -0.17 -2.20 0.03
Child's Age -0.05 -0.60 0.55
Disease Duration < 2 years 0.14 1.66 0.10
Employed -0.16 -2.02 0.05
Mother African-American 0.22 1.91 0.06
Mother Non-White Minority -0.20 -1.75 0.08
Annual Household Income 0.21 2.61 0.01
Cancer on Treatment 0.21 2.11 0.04
Epilepsy 0.10 0.88 0.38
Kidney 0.38 3.81 < 0.01
Asthma 0.17 1.52 0.13
Step 3 0.16 4.13 <.001
Child's Sex -0.18 -2.30 0.02
Disease Duration < 2 years 0.13 1.53 0.13
Employed -0.16 -2.06 0.04
Mother African-American 0.21 1.84 0.07
Mother Non-White Minority -0.19 -1.70 0.09
Annual Household Income 0.20 2.54 0.01
Cancer on Treatment 0.19 2.20 0.03
Kidney 0.33 4.11 < 0.01
Asthma 0.12 1.48 0.14








Table 8 Continued
Predictor B t p Adj.R2 F P
Step 4 0.14 4.67 <.001
Child's Sex -0.16 -2.45 0.02
Employed -0.14 -1.79 0.08
Mother African-American 0.07 1.83 0.07
Mother Non-White Minority -0.19 -1.67 0.10
Annual Household Income 0.16 2.13 0.04
Cancer on Treatment 0.21 2.75 0.01
Kidney 0.29 3.88 < 0.01
Step 5 0.12 6.43 < 0.01
Child's Sex -0.15 -2.00 0.05
Annual Household Income 0.13 1.68 0.10
Cancer 0.22 2.80 0.01
Kidney 0.30 3.85 < 0.01
Step 6 Final Model 0.12 8.96 < 0.01
Child's Sex -0.18 -2.53 0.01
Cancer 0.25 3.43 < 0.01
Kidney 0.26 3.62 < 0.01
Note. Higher scores indicate greater caregiving duration (greater time spent caregiving)
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 9: Hierarchical Multiple Regression Steps: Predictors of Subjective Stress
Predictor B t p Adj. R2 F p
Step I Demographics 0.03 1.32 0.21
Child's Sex -0.12 -1.38 0.17
Child's Age -0.09 -0.94 0.35
Disease Duration < 2 years 0.07 0.86 0.39
Camp Experience -0.07 -0.82 0.42
Maternal Age 0.12 1.24 0.22
Marital Status 0.02 0.19 0.85
Employed 0.08 0.89 0.38
# Other Children in Home 0.13 1.50 0.14
Caretaker Time 0.08 0.78 0.44
Mother African-American 0.24 1.86 0.07
Mother Non-White Minority -0.08 -0.63 0.53
Maternal Education -0.04 -0.49 0.63
Annual Household Income 0.00 -0.03 0.98
Step 2 Illness Group 0.09 3.21 < 0.01
Child's Sex -0.13 -1.78 0.08
Maternal Age 0.07 0.90 0.37
# Other Children in Home 0.08 1.12 0.26
Mother African-American 0.16 2.20 0.03
Cancer on Treatment 0.21 2.25 0.03
Epilepsy -0.05 -0.53 0.60
Kidney 0.16 1.67 0.10
Asthma 0.13 1.29 0.20
Step 3 0.10 4.15 < 0.01
Child's Sex -0.12 -1.71 0.09
# Other Children in Home 0.07 0.98 0.33
Mother African-American 0.16 2.17 0.03
Cancer on Treatment 0.22 2.84 0.01
Kidney 0.19 2.43 0.02
Asthma 0.17 2.11 0.04
Step 4 Objective Stress 0.25 9.48 < 0.01
Child's Sex -0.04 -0.60 0.55
Mother African-American 0.15 2.23 0.03
Cancer on Treatment 0.15 2.06 0.04
Kidney 0.05 0.66 0.51
Asthma 0.15 2.05 0.04
Caregiving Frequency 0.33 4.27 < 0.01
Caregiving Duration 0.16 2.00 0.05








Table 9 Continued
Predictor B t p Adj. R2 F p
Step 5 Final Model 0.26 13.22 < 0.01
Mother African-American 0.15 2.34 0.02
Cancer on Treatment 0.13 1.97 0.05
Asthma 0.14 2.02 0.05
Caregiving Frequency 0.34 4.55 < 0.01
Caregiving Duration 0.17 2.20 0.03
Note. Higher scores indicate greater caregiving stress
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 10: Hierarchical Multiple Regression Steps: Predictors of Overload
Predictor B t p Adj. R2 F p
Step 1 Demographics -0.01 0.83 0.62


Child's Sex -0.13 -1.49
Child's Age 0.05 0.54
Disease Duration < 2 years -0.05 -0.56
Camp Experience -0.06 -0.65
Maternal Age -0.03 -0.35
Marital Status 0.07 0.66
Employed -0.01 -0.13
# Other Children in Home 0.02 0.24
Caretaker Time 0.22 2.17
Mother African-American 0.07 0.51
Mother Non-White Minority -0.03 -0.25
Maternal Education -0.03 -0.38
Annual Household Income -0.04 -0.41


0.14
0.59
0.58
0.52
0.73
0.51
0.90
0.81
0.03
0.61
0.81
0.70
0.69


Step 2 Illness Group 0.04 2.22 0.04
Child's Sex -0.13 -1.69 0.09
Caretaker Time 0.17 2.25 0.03
Cancer on Treatment 0.18 1.92 0.06
Epilepsy 0.07 0.66 0.51
Kidney 0.04 0.46 0.65
Asthma 0.02 0.14 0.89
Step 3 Objective Stress 0.05 2.88 0.02
Child's Sex -0.11 -1.39 0.17
Caretaker Time 0.17 2.24 0.03
Cancer on Treatment 0.14 1.83 0.07
Caregiving Frequency 0.05 0.55 0.58
Caregiving Duration 0.06 0.71 0.48
Step 4 Subjective Stress 0.10 6.12 < 0.01
Child's Sex -0.09 -1.21 0.23
Caretaker Time 0.15 2.10 0.04
Cancer on Treatment 0.12 1.67 0.10
Caregiving Stress 0.24 3.30 < 0.01
Step 5 0.10 7.65 < 0.01
Caretaker Time 0.14 1.97 0.05
Cancer on Treatment 0.12 1.66 0.10
Caregiving Stress 0.25 3.51 < 0.01
Step 6 Final Subjective 0.09 10.00 < 0.01
Stress Model
Caretaker Time 0.15 2.13 0.03
Caregiving Stress 0.27 3.75 < 0.01
Note. Higher scores indicate greater overload scores







70
Table 10- Continued
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 11: Hierarchical Multiple Regression Steps: Predictors of Depression-Anxiety
Predictor B t p Adj. R2 F p
Step 1 Demographics 0.04 1.47 0.14
Child's Sex -0.03 -0.41 0.68
Child's Age 0.09 0.98 0.33
Disease Duration < 2 years -0.02 -0.20 0.84
Camp Experience 0.09 0.99 0.33
Maternal Age -0.05 -0.58 0.56
Marital Status 0.07 0.74 0.46
Employed -0.16 -1.74 0.08
# Other Children in Home -0.05 -0.61 0.55
Caretaker Time 0.16 1.59 0.11
Mother African-American 0.19 1.53 0.13
Mother Non-White Minority 0.06 0.48 0.63
Maternal Education 0.11 1.21 0.23
Annual Household Income 0.04 0.46 0.65
Step 2 Illness Group 0.07 2.68 0.01
Employed -0.15 -1.85 0.07
Caretaker Time 0.07 0.83 0.41
Mother African-American 0.19 2.43 0.02
Maternal Education 0.09 1.24 0.22
Cancer on Treatment 0.12 1.31 0.19
Epilepsy 0.05 0.45 0.66
Kidney 0.10 1.01 0.31
Asthma -0.11 -1.04 0.30
Step 3 Objective Stress 0.08 3.07 0.01
Employed -0.15 -1.96 0.05
Mother African-American 0.20 2.75 0.01
Maternal Education 0.08 1.00 0.32
Cancer on Treatment 0.07 0.91 0.37
Asthma -0.16 -2.15 0.03
Caregiving Frequency 0.01 0.12 0.91
Caregiving Duration 0.09 1.03 0.30
Step 4 0.08 4.97 < 0.01
Employed -0.14 -1.85 0.07
Mother African-American 0.19 2.57 0.01
Asthma -0.18 -2.45 0.02
Caregiving Duration 0.12 1.65 0.10








Table I 1 Continued
Predictor B t p Adj. R2 F p
Step 5 Subjective Stress 0.11 5.50 < 0.01
Employed -0.15 -2.05 0.04
Mother African-American -0.16 2.16 0.03
Cancer on Treatment -0.19 -2.62 0.01
Asthma 0.05 0.61 0.54
Caregiving Stress 0.21 2.89 < 0.01
Step 6 Final Subjective
Stress Model 0.12 6.80 < 0.01
Employed -0.15 -2.12 0.04
Mother African-American 0.15 2.12 0.04
Asthma -0.20 -2.86 0.01
Caregiving Stress 0.22 3.06 < 0.01
Note. Higher scores indicate greater depression-anxiety score
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 12: Hierarchical Multiple Regression Steps: Predictors of Maternal Distress
Predictor B t p Adj. R2 F p
Step 1 Demographics 0.01 1.12 0.35
Child's Sex -0.01 -0.16 0.87
Child's Age 0.16 1.70 0.09
Disease Duration < 2 years 0.03 0.39 0.70
Camp Experience 0.06 0.69 0.49
Maternal Age -0.03 0.34 0.73
Marital Status 0.04 0.42 0.68
Employed -0.12 -1.31 0.19
# Other Children in Home -0.01 -0.08 0.93
Caretaker Time 0.07 0.69 0.49
Mother African-American 0.24 1.86 0.07
Mother Non-White Minority -0.04 -0.28 0.78
Maternal Education -0.03 -0.36 0.72
Annual Household Income 0.04 0.41 0.68
Step 2 Illness Group 0.08 3.12 < 0.01
Child's Age 0.12 1.47 0.14
Employed -0.13 -1.74 0.08
Mother African-American 0.20 2.71 0.01
Cancer on Treatment 0.05 0.54 0.59
Epilepsy -0.12 -1.09 0.28
Kidney -0.13 -1.39 0.17
Asthma -0.24 -2.31 0.02
Step 3 Objective Stress 0.08 2.95 < 0.01
Child's Age 0.13 1.55 0.12
Employed -0.13 -1.79 0.08
Mother African-American -0.19 -2.13 0.03
Epilepsy -0.17 -1.73 0.09
Kidney -0.19 -2.13 0.03
Asthma -0.28 -3.21 < 0.01
Caregiving Frequency 0.11 1.28 0.20
Caregiving Duration -0.01 -0.16 0.87
Step 4 0.09 3.39 < 0.01
Child's Age 0.13 1.55 0.12
Employed -0.13 -1.79 0.08
Mother African-American 0.19 2.63 0.01
Epilepsy -0.17 -1.75 0.08
Kidney -0.19 -2.14 0.03
Asthma -0.28 -3.23 < 0.01
Caregiving Frequency 0.11 1.40 0.16








Table 12 Continued
Predictor B t p Adj. R2 F p
Step 5 Subjective Stress 0.17 6.33 < 0.01
Child's Age 0.13 1.60 0.10
Employed -0.13 -1.83 0.07
Mother African-American 0.14 2.04 0.04
Epilepsy -0.08 -0.90 0.28
Kidney -0.16 -1.89 0.03
Asthma -0.28 -3.31 < 0.01
Caregiving Stress 0.34 4.29 < 0.01
Step 6 0.17 7.18 <0.01
Child's Age 0.10 1.37 0.17
Employed -0.13 -1.85 0.07
Mother African-American 0.15 2.06 0.04
Kidney -0.14 -1.90 0.06
Asthma -0.24 -3.25 < 0.01
Caregiving Stress 0.33 4.65 < 0.01
Step 7 0.17 8.19 <0.01
Employed -0.12 -1.75 0.08
Mother African-American 0.15 2.13 0.03
Kidney -0.13 -1.79 0.08
Asthma -0.27 -3.70 < 0.01
Caregiving Stress 0.32 4.52 < 0.01
Step 8 0.15 11.10 <0.01
Mother African-American 0.13 1.80 0.07
Asthma -0.24 -3.42 < 0.01
Caregiving Stress 0.30 4.28 < 0.01
Step 9 -Final Subjective 0.14 14.84 < 0.01
Stress Model
Asthma -0.23 -3.28 < 0.01
Caregiving Stress 0.33 4.66 < 0.01
Note. Higher scores indicate greater maternal distress score
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 13: Hierarchical Multiple Regression Steps: Predictors of Recreational Activities
Predictor B T p Adj. R F P
Step 1 Demographics < 0.01 1.04 0.42
Child's Sex -0.05 -0.54 0.59
Child's Age 0.03 0.36 0.72
Disease Duration < 2 years -0.13 -1.56 0.12
Camp Experience -0.13 -1.35 0.18
Maternal Age 0.02 0.25 0.81
Marital Status -0.10 -0.98 0.33
Employed -0.21 -2.35 0.02
# Other Children in Home -0.02 -0.27 0.79
Caretaker Time -0.07 -0.74 0.46
Mother African-American -0.05 -0.39 0.70
Mother Non-White Minority -0.07 -0.56 0.58
Maternal Education 0.09 1.04 0.30
Annual Household Income 0.03 0.32 0.75
Step 2 Illness Group 0.04 2.03 0.05
Disease Duration < 2 years -0.01 -0.15 0.89
Camp Experience -0.06 -0.68 0.50
Employed -0.16 -2.07 0.04
Cancer on Treatment -0.05 -0.53 0.60
Epilepsy 0.12 1.12 0.27
Kidney 0.02 0.21 0.84
Asthma 0.22 1.98 0.05
Step 3 Objective Stress 0.07 3.50 0.01
Employed -0.14 -1.89 0.06
Epilepsy 0.15 1.81 0.07
Asthma 0.26 3.21 < 0.01
Caregiving Frequency -0.17 -1.95 0.05
Caregiving Duration 0.07 0.79 0.43
Step 4 0.07 4.23 < 0.01
Employed -0.15 -2.07 0.04
Epilepsy 0.13 1.66 0.10
Asthma 0.25 3.13 < 0.01
Caregiving Frequency -0.13 -1.81 0.07
Step 5 Final Objective
Stress Model 0.06 4.68 < 0.01
Employed -0.15 -2.07 0.04
Asthma 0.20 2.69 0.01
Caregiving Frequency -0.13 -1.78 0.08








Table 13 Continued
Predictor B t p Adj. R2 F P
Step 6 Subjective Stress 0.07 4.12 < 0.01
Employed -0.15 -2.11 0.04
Epilepsy 0.10 1.28 0.20
Asthma 0.25 3.16 < 0.01
Caregiving Stress -0.13 -1.69 0.09
Step 7 Final Subjective
Stress Model 0.06 4.92 < 0.01
Employed -0.15 -2.11 0.04
Asthma 0.21 2.88 < 0.01
Caregiving Stress -0.14 -1.97 0.05
Step 8 Mediator Model 0.06 3.95 < 0.01
Employed -0.15 -2.08 0.04
Asthma 0.21 2.83 0.01
Caregiving Frequency -0.08 -1.01 0.32
Caregiving Stress -0.11 -1.31 0.19
Note. Higher scores indicate greater time spent in recreational activities
The following variables are coded yes = 1, no = 0
Child's Sex coded yes for females
Disease Duration < 2 years coded yes if duration was less than or equal to 2 years
Marital Status coded yes if married
Employed coded yes if currently employed
African-American coded yes if African-American
Non-White Minority coded yes if non-white minority (e.g., Hispanic, Asian)
Cancer on Treatment coded yes for child with cancer on treatment
Epilepsy coded yes for child with epilepsy
Kidney coded yes for child with kidney disorder
Asthma coded yes for child with asthma
Camp Experience coded for number of previous years attended BCGC
Caretaker Time coded in percent of time mother considers herself primary caretaker











Table 14: ANOVA Summary Tables
Source df MS F p
CAREGIVING FREQUENCY
Between Subjects


4 3363.59
156 362.98
Within Subjects


9.27 0.00


Time
Time x Illness Group
Error (Time)


2 249.98
8 235.65
312 105.36


CAREGIVING DURATION
Between Subjects


4
156
Within Subjects


19069.83
2567.88


7.43 < 0.01


Time
Time x Illness Group
Error (Time)


2 1065.98
8 868.69
312 1136.42


CAREGIVING STRESS
Between Subjects


Group
Error


Time
Time x Illness Grou
Error (Time)


4 1975.84
156 484.16
Within Subjects
2 164.93
p 8 225.72
312 196.38


4.08 < 0.01


0.84
1.15


0.43
0.33


MATERNAL OVERLOAD
Between Subjects
Group 4


138
Within Subjects


Time
Time x Illness Group
Error (Time)


13.85
28.57


3 100.36
12 7.67
414


Group
Error


2.37
2.24


0.10
0.03


Group
Error


0.94
0.76


0.39
0.63


0.49


24.61
1.88


0.75


< 0.01
0.04


Error








Table 14 Continued
Source df MS F p
DEPRESSION-ANXIETY
Between Subjects


Group
Error


Time
Time x Illness Grou]
Error (Time)


4 1.96
138 7.38
Within Subjects
3 6.18
p 12 1.48
414 1.25


MATERNAL DISTRESS
Between Subjects


Group
Error


4
138
Within Subjects


Time
Time x Illness Group
Error (Time)


30.11
67.56


3 84.64
12 26.69
414 8.55


RECREATIONAL ACTIVITIES
Between Subjects


Group
Error


4 692.67
138 1169.42
Within Subjects


Time
Time x Illness Group
Error (Time)


3 283.99
12 806.19
414


0.27


4.95
1.18


0.90


< 0.01
0.29


0.45


9.90
3.12





0.59


0.63
1.77


0.78


< 0.01
< 0.01





0.67


0.60
0.05











Table 15: Adjusted Means and Standard Deviations for ANOVAs
One week One month Collapsed
Variable Pre-Camp Post-Camp Post-Camp Across Time
Illness Group M(SD) M(SD) M..(SD) M (SD)
Caregiving Frequency
Cancer on Treatment 18.45 (11.86) 16.15 (14.11) 14.40 (15.78) 16.33 (10.03)
Epilepsy 15.76 (10.52) 12.85 (7.84) 12.59 (10.55) 13.73 (7.66)
Kidney 28.36 (25.43) 24.05 (18.87) 19.59 (19.36) 24.00 (17.34)
Asthma 15.94 (12.26) 18.75 (13.58) 20.62 (13.58) 18.44 (11.76)
Cancer Not on Treatment 5.68 (8.26) 7.88 (11.25) 4.00 (7.12) 5.85 (7.93)

Caregiving Duration
Cancer on Treatment 5.61 (4.58) 7.24 (8.00) 6.51 (9.20) 6.45 (5.77)ac
Epilepsy 1.80 (3.43) 2.52 (5.89) 1.87 (3.89) 2.06 (3.21)ad
Kidney 6.67 (7.54) 5.08 (5.22) 4.32 (5.10) 5.36 (4.12)d
Asthma 2.76 (3.58) 2.64 (4.26) 2.89 (5.48) 2.76 (3.19)b
Cancer Not on Treatment 1.79(3.61) 2.81 (6.41) 1.14(2.17) 1.91 (3.51)cd

Caregiving Stress
Cancer on Treatment 15.45 (20.60) 6.80 (12.45) 8.45 (15.15) 10.23 (11.15)
Epilepsy 3.50 (7.69) 5.09 (9.05) 5.20 (10.24) 4.59 (7.43)ab
Kidney 15.68 (24.27) 17.27 (28.27) 9.09 (13.96) 14.02 (15.72)a
Asthma 11.60 (17.17) 12.19 (20.88) 13.06 (25.18) 12.28 (16.46)b
Cancer Not on Treatment 4.52 (11.04) 2.92 (9.32) 4.28 (17.18) 3.91 (10.02)
Note. Means sharing superscripts within each variables were significantly on post-hoc analysis
using Tukey's HSD.








Table 15 Continued
One week One month Collapsed
Variable Pre-Camp Post-Camp Post-Camp Across Time
Illness Group M (SD) M (SD) M (SD) M (SD)
Overload
Cancer on Treatment 11.33 (3.03) 8.33 (3.11) 9.22(2.98) 8.61 (3.26)
Epilepsy 10.09 (3.12) 7.95 (2.97) 9.23 (3.83) 9.26 (9.87)
Kidney 10.00 (2.97) 7.29 (2.86) 10.17 (3.28) 9.61 (3.05)
Asthma 9.91 (3.10) 7.96 (2.57) 9.69 (2.97) 9.24 (3.05)
Cancer Not on Treatment 10.06 (3.20) 8.18 (3.47) 8.05 (3.23) 7.95 (2.59)

Depression-Anxiety
Cancer on Treatment 2.44 (1.69) 1.83 (1.50) 2.17 (1.86) 1.94 (1.95)
Epilepsy 2.09 (1.70) 1.58 (1.59) 1.95 (1.88) 1.74 (1.63)
Kidney 2.50 (1.72) 1.33 (1.46) 2.11 (1.94) 1.89 (1.91)
Asthma 1.64 (1.39) 1.60 (1.25) 1.83 (1.83) 1.83 (1.68)
Cancer Not on Treatment 2.18 (1.44) 1.77 (1.74) 1.41 (1.47) 2.00 (1.88)

Maternal Distress
Cancer on Treatment 17.11 (5.52) 15.61 (4.45) 15.61 (4.46) 15.11 (5.50)
Epilepsy 16.23 (4.21) 14.67 (4.99) 15.78 (5.22) 13.72 (4.55)
Kidney 16.11 (4.89) 13.61 (4.90) 16.66 (5.36) 16.28 (5.92)
Asthma 14.52 (4.30) 14.61 (4.50) 14.64 (4.54) 14.52 (4.78)
Cancer Not on Treatment 17.64 (4.65) 14.18 (5.46) 13.85 (4.89) 13.36 (4.88)

Recreational Activity Time
Cancer on Treatment 25.75 (16.27) 29.48 (12.73) 32.30 (25.89) 30.94 (21.23)
Epilepsy 39.29 (28.05) 30.30 (18.81) 28.54 (21.84) 32.52 (25.50)
Kidney 29.11 (16.53) 40.95 (33.84) 23.76 (17.21) 33.27 (21.95)
Asthma 44.48 (34.31) 34.00 (27.32) 31.24 (33.75) 29.78 (25.13)
Cancer Not on Treatment 28.35 (19.05) 25.98 (14.72) 34.43 (29.91) 26.65 (13.91)
Note. Cancer on Treatment (n = 20), Epilepsy (n = 46), Kidney (n = 22), Asthma (n = 48),
Cancer Not on Treatment (n = 25)







81
Table 16: Comparison of Means for Overload Using Paired t-tests
Mean SD df T

Pre-camp 10.05 3.14 152 9.13*
During-camp 7.98 2.88

Pre-camp 10.05 3.14 155 3.66*
One week post camp 9.25 3.30

Pre-camp 10.05 3.14 149 4.35*
One month post-camp 8.98 3.26

During camp 7.98 2.88 149 -5.35*
One week post-camp 9.25 3.30

One week post-camp 9.25 3.30 149 1.45
One month post-camp 8.98 3.26
*Significant by Bonferroni adjusted p < .05











Table 17: Comparison of Means for Depression-Anxiety Using Paired t-tests

Mean SD Df t

Pre-camp 2.09 1.58 152 3.45*
During-camp 1.63 1.52

Pre-camp 2.06 1.58 155 1.25
One week post camp 1.89 1.79

Pre-camp 2.05 1.57 149 1.41
One month post-camp 1.86 1.76

During camp 1.63 1.52 149 -2.10
One week post-camp 1.90 1.79

One week post-camp 1.64 1.48 144 -1.68
One month post-camp 1.85 1.73
*Significant by Bonferroni adjusted p < .05











Table 18: MANOVA Summary Tables


Source
Cancer on Treatment


df F 1


Time (T) 2, 18 1.77 0.20
Caregiver Burden Measures (C) 2, 18 0.15 0.86
TxC 4,16 1.09 0.40

Time (T) 3, 15 3.83 0.03
Outcome Measures (0) 3, 15 4.58 0.02
TxO 9,9 2.10 0.14

Epilepsy
Time (T) 2,44 3.07 0.05
Caregiver Burden Measures (C) 2, 44 0.12 0.89
TxC 4,42 2.25 0.08

Time (T) 3,40 0.85 0.48
Outcome Measures (0) 3, 40 8.12 <.01
TxO 9,34 1.41 0.22

Kidney
Time (T) 2, 20 0.43 0.66
Caregiver Burden Measures (C) 2, 20 1.61 0.23
TxC 4,18 0.38 0.82

Time (T) 3, 15 1.60 0.23
Outcome Measures (0) 3, 15 1.37 0.29
TxO 9,9 1.66 0.23

Asthma
Time (T) 2, 46 1.69 0.20
Caregiver Burden Measures (C) 2, 46 0.46 0.64
TxC 4,44 0.98 0.43

Time (T) 3, 39 1.86 0.15
Outcome Measures (0) 3, 39 2.33 0.09
TxO 9, 33 2.29 0.04








Table 18 Continued
Source df F R
Cancer Not on Treatment
Time (T) 2, 23 0.20 0.82
Caregiver Burden Measures (C) 2, 23 0.65 0.53
TxC 4,21 0.81 0.53

Time (T) 3, 19 3.81 0.03
Outcome Measures (0) 3, 19 3.68 0.03
TxO 9, 13 2.53 0.06












Table 19: Means and Standard Deviations for MANOVAs
One week One month
Illness Group Pre-Camp During Campa Post-Camp Post-Camp
Variable M(SD) M (SD) M (SD) M(SD)


Cancer on Treatment
Caregiving Frequency
Caregiving Duration
Caregiving Stress
Overload
Depression-Anxiety
Maternal Distress
Recreational Activities

Epilepsy
Caregiving Frequency
Caregiving Duration
Caregiving Stress
Overload
Depression-Anxiety
Maternal Distress
Recreational Activities

Kidney
Caregiving Frequency
Caregiving Duration
Caregiving Stress
Overload
Depression-Anxiety
Maternal Distress
Recreational Activities

Asthma
Caregiving Frequency
Caregiving Duration
Caregiving Stress
Overload
Depression-Anxiety
Maternal Distress
Recreational Activities


0.00 (1.00)
0.00 (1.00)
0.00 (1.00)
0.01 (1.00)
0.00 (1.00)
0.00 (1.00)
0.00 (1.00)


0.00 (1.00)
0.00 (1.00)
0.00(1.00)
0.00 (1.00)
0.00 (1.00)
0.00 (1.00)
0.00 (1.00)


0.00 (1.00)
0.00 (1.00)
0.00 (1.00)
0.03 (1.05)
0.00 (0.96)
0.05 (0.97)
0.04 (1.06)


0.00 (1.00)
0.00 (1.00)
0.00 (1.00)
0.02 (1.00)
0.00 (1.00)
0.00(1.00)
0.00(1.00)


-0.98 (1.03)
-0.38 (0.94)
-0.27 (0.85)
0.27 (0.83)





-0.72 (0.98)
-0.34 (0.96)
-0.39 (1.15)
-0.29 (.68)





-0.92 (1.01)
-0.65 (.81)
-0.56 (0.97)
0.80 (2.17)





-0.60 (0.82)
-0.03 (0.91)
0.01 (1.05)
-0.31 (0.81)


-0.19(1.19)
0.36(1.75)
-0.42 (0.60)
-0.69 (0.98)
-0.18 (1.15)
-0.27 (0.85)
0.45 (1.68)


-0.28 (0.75)
0.21 (1.72)
0.21 (1.18)
-0.29 (1.26)
-0.12 (1.13)
-0.13 (1.20)
-0.35 (.79)


-0.17 (0.74)
-0.21 (0.69)
-0.06(1.16)
0.09(1.16)
-0.22 (1.08)
0.05 (1.07)
-0.30 (1.10)


0.22(1.11)
-0.03 (1.19)
0.03 (1.22)
-0.05 (0.95)
0.14(1.34)
0.01 (1.06)
-0.37 (1.01)


-0.34 (1.33)
0.20 (2.01)
-0.34 (0.74)
-0.89 (1.07)
-.31 (1.21)
-0.37 (1.05)
0.36 (1.38)


-0.30 (1.00)
0.01 (1.13)
0.22(1.33)
-0.28 (1.27)
-0.24 (0.98)
-0.61 (1.05)
-0.21 (0.93)


-0.34 (0.76)
-0.31 (0.68)
-0.27 (0.58)
-0.11 (1.08)
-0.34 (1.07)
-0.03 (1.18)
0.31 (1.41)


0.38 (1.42)
0.38 (1.53)
0.09 (1.47)
-0.19 (0.97)
0.14(1.23)
-0.02 (1.12)
-0.45 (0.73)







86
Table 19 Continued
One week One month
Illness Group Pre-Camp During Campa Post-Camp Post-Camp
Variable M(SD) M (SD) M (SD) M(SD)
Cancer Not on Treatment
Caregiving Frequency 0.00(1.00) 0.27 (1.36) -0.20 (0.86)
Caregiving Duration 0.00 (1.00) 0.28 (1.78) -0.18 (0.60)
Caregiving Stress 0.00 (1.00) -0.14 (0.84) -0.02 (1.56)
Overload 0.03 (1.01) -0.35 (0.96) -0.39 (0.89) -0.41 (0.72)
Depression-Anxiety 0.09 (1.00) -0.19 (1.22) -0.44 (1.03) -0.03 (1.31)
Maternal Distress 0.07 (1.05) -0.71 (1.23) -0.78 (1.10) -0.89 (1.10)
Recreational Activities 0.07(1.01) -0.19 (0.78) 0.26 (1.58) -0.16 (0.74)
Note. Cancer on Treatment (n = 20), Epilepsy (n = 46), Kidney (n = 22), Asthma (n = 48),
Cancer Not on Treatment (n = 25)
aCaregiving Frequency, Duration and Stress not assessed at the During Camp interview
































Pre-Camp During One-week Post One-month
Post


Figure 2. Average rating of overload for previous week











2.5


m 2.3
a)
E

2.1


1.9


o 1.7
ra

1.5



1.3


SI I


One-week Post One-month
Post


Figure 3. Average rating of depression-anxiety for previous week


,,,"Cancer (on
treatment)
--WEpepsy


Asthma
00 Cancer (not
on treatment)


Pre-Camp


During
















E





5

E
14


Figure 4. Average rating of maternal distress for previous week


Pre-Camp During One-week Post One-month Post




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