Citation
Therapeutic Recreation Needs Assessment in Hospitalized Adolescents

Material Information

Title:
Therapeutic Recreation Needs Assessment in Hospitalized Adolescents
Creator:
Sampson, Tara
Gibson, Heather ( Mentor )
Place of Publication:
Gainesville, Fla.
Publisher:
University of Florida
Publication Date:
Language:
English

Subjects

Genre:
serial ( sobekcm )

Record Information

Source Institution:
University of Florida
Holding Location:
University of Florida
Rights Management:
All applicable rights reserved by the source institution and holding location.

Downloads

This item has the following downloads:


Full Text






Journ31l of in.nderr.3adu.3e :--esearch

..Oluiv - , - isue ,* - Jul,. u.' uit lul[ -'IU



Therapeutic Recreation Needs Assessment in Hospitalized Adolescents

Tara Sampson


ABSTRACT


Adolescence is marked by various psycho-social developmental tasks including the definition of personal identity,

the constant search for social acceptance and approval, and the establishment of sexual identity. Autonomy,

identity development, self-advocacy, body image and exploration are all components of the process an

adolescent must face, and these processes make adolescence a challenging time. When adolescents are faced

with hospitalization, either due to a chronic illness or an acute occurrence, these developmental challenges can

be heightened, and their ability to cope and adjust to life stressors may be compromised. Hospitalization can result

in a loss of control, loss of independence, decreased self-esteem due to changes in body image, and increased risk

of social isolation. This study sought to establish the needs of hospitalized adolescents with the aim of

tailoring therapeutic recreation programming and interventions to better suit those needs. Through hour long,

semi-structured interviews, six hospitalized adolescents were asked to share their leisure and life experiences and

to reflect upon how hospitalization had affected their lives and what changes they would suggest for making

the current medical system more "adolescent friendly." Common themes throughout these interviews were the

need for social interaction, the request for resources that establish normality, and the heightened need for

privacy and respect by the medical community.



INTRODUCTION


While hospitalized adolescents are admitted for a range of causes including chronic illness, acute illness, injury,

or surgical requirements Boice (1998) suggests that the developmental and emotional needs of

hospitalized adolescents can be generalized across specific diagnoses, and thus the design of interventions

and programming for adolescents can be planned accordingly. Therapeutic recreation strives to use leisure

and recreation as a functional intervention to meet the needs of its clientele. In the case of hospitalized

adolescents, the importance and influence of leisure on their development and the functional outcomes that

leisure-based interventions can provide this age group were addressed. Through the interviewing process, four

main need-based themes emerged: body image and self-esteem, need for social interaction, and self-advocacy.


REVIEW OF LITERATURE






Adolescents and Leisure


Carter, Van Andel, & Robb (2003) argue that "Adolescents meet their developmental needs through recreation

and leisure, thus illness, disease and injury interrupt development" ( (p. 438). Phoenix (2001) suggests that

the developmental processes during adolescence are focused around identity formation. Adolescents seek out

new opportunities that center around both establishing themselves as individuals and seeking social relatedness

from their peer groups. The identity formation process is achieved when alternatives of identity have been

explored and the adolescent commits to a particular concept of self. (Shaw, Kleiber and Caldwell, 1995).

The adolescent explores options that require both autonomy from parental figures and dependence and

acceptance from peers.



Shaw et al., sought to show the relatedness between identity development in adolescents and their participation

in chosen leisure activities. The authors examined leisure participation in four subcategories, physical

activities including sport, watching television, social activities, and other free-time activities. They found that

time spent participating in leisure activities had both a negative and positive effect on identity formation,

depending on the activity and the gender of the participant. For example, television watching did not contribute

to identity formation or self-esteem at all, while for males identifying themselves with a particular sport

contributed significantly to identity formation and self-esteem. While this does not show that one specific source

of leisure will always promote identity formation, it suggests that it is affected directly by the leisure

participation patterns of adolescents. As such, these findings support the applicability of leisure as an intervention

for hospitalized adolescents, as identity formation is so critical and so difficult for this population.



Development


Adolescents, unlike their younger pediatric counterparts, have the ability to understand the causes and effects

of their condition and of treatment (Boice, 1998). Understanding this is critical in approaching the care of

an adolescent in an appropriate and effective manner. The medical community surrounding these patients has a

duty to present medical information in a developmentally appropriate way and to foster the decision-making

skills that these patients possess.



Boice explains that hospitalization may magnify the developmental stressors; indeed, Wong and Whaley

(1996) identified a number of stressors associated with hospitalized adolescents including "loss of control,

bodily injury and pain, and separation-especially from peer group" (p. 296). They go on to explain that some

typical responses to hospital stressors can be, but are not limited to, boredom, loneliness, depression, and

even overconfidence. Knowing that hospitalization brings additional stress to an adolescent and knowing the

potential for their reactions is critical in the design of interventions to treat these symptoms brought upon by

hospital stress.


Body Image/Self-Esteem






Denholm (1989) compared hospitalized and non-hospitalized adolescents on self esteem and body attitude. He

found that there were few differences between the groups in terms of self-esteem. Additionally, in terms of

body attitudes, Denholm found that in some male adolescents their body-image was better than their

non-hospitalized peers. This was hypothesized to be due to "surviving" the hospital experience. Visibility of

hospital effects also played a role in the self-scoring of body attitudes, with adolescents without visible effects

scoring average or above average, and adolescents with visible effects scoring below average as predicted.



Hospitalization may magnify the physical and emotional adjustment to the bodily changes that occur

during adolescence. For example, in the case of chronic illness, "the timing of puberty may vary depending on

the illness...and chronically ill adolescents express more concern about their height and weight" (Boice, 1998, p.

931). A chronically ill adolescent may face stunted growth, delayed sexual development, and other issues that

affect their perception of self. Further, Denholm suggests that surgical procedures that result in visible

physical changes in appearance can be an additional stressor. When illness frequently changes the

outward physicality of an adolescent, his or her ability to function socially may also be compromised.



Social Interaction


Hospitalization, by its very nature puts adolescents at risk for social isolation, cutting them off from their

customary peer group (Carter, Van Andel, & Robb, 2003). Stevens (1989) sought to identify the perceived

coping strategies of hospitalized adolescents before a surgical procedure and what coping strategies were

actually used. In this study, 68% of adolescents thought that seeking social support would be the coping

mechanism they would rely on while in the hospital, followed by using sleep to distance themselves from

the situation. Stevens found that social support was localized mostly in the support of the mother figure, and not

as much on outside (peer) social support. Additionally, Stevens concluded that while there were no

significant relationships between anticipated and actual coping strategies, that the identified and utilized

coping strategies of this study merit further investigation. Understanding the relationship between social support

from family and friends and the ability of an adolescent to cope in the hospital setting may further suggest

the importance of providing opportunities for social interaction and forming relationships while in the hospital.



Self Advocacy


Carter et al. (2003) suggest that hospitalization inherently involves a loss of independence and privacy which

means for adolescents the psycho-social tasks of individuation and self determination are virtually impossible

to achieve. As a result, Carter et al. recommend giving adolescents the appropriate medical knowledge

and understanding so that they are empowered to make their own decisions in the hospital setting, in turn

increasing their sense of control over an uncomfortable and potentially frightening situation. Burghen,

Haluska, Steen, and Hinds (2004) suggest that it is a mistake to exclude the adolescent from the decisions

that involve their health because of the misguided assumption that they do not understand their medical

condition sufficiently (Pawelko, 1997).







Special consideration needs to be given to the terminally ill adolescents in terms of their involvement in end-of-

life decision making. Burghen et al., found that the involvement of a dying child in decision making will "allow

them to make informed decisions that will be less likely to cause regret to parents, patients, or providers at a

later date" (p. 181). Self-advocacy, in the form of asserting one's last wishes, is an important responsibility

that should be given to the terminally ill adolescent in all ways possible.



PURPOSE OF STUDY


Hospitalized adolescents have the potential to need special programming and interventions based on

their developmental status, their need for self-advocacy, the potential for negative body image, and the

importance of social/peer interaction and support. This study sought to understand and better structure

future interventions based on the self-stated needs of hospitalized adolescents themselves. By using a

semi-structured interview guide, these adolescents were asked questions about their experience in the hospital

and what they would like to see done differently. The goal of this study was to attain new insight into

hospitalized adolescents' unique needs, and to identify the best way to meet those needs through

Therapeutic Recreation.



METHODS


A semi-structured interview guide was developed to analyze the self-stated needs of hospitalized adolescents.

This asked them about their ability and need to socialize in the hospital environment, their leisure interests and

how those interests did or did not translate into the hospital environment, their sources of support and coping

during hospitalization, and their recommendations on how the needs of their age group could better be met.



Over a two-month period adolescents within the ages of 13 and 21 were approached by the staff of

Pediatric Palliative Care at a major southeastern university medical center. An informational letter about the

interview process was presented to each potential candidate, and their consent sought. Age was the only

restriction to recruitment and no other information was collected or considered. Of the over 15 adolescents that

were approached, six were interviewed. These interviews took place in their hospital room and the patients were

all accompanied by at least one parent. The interviews lasted approximately one hour and were audio taped

and subsequently transcribed. The interviews were transcribed verbatim. Input from the patient's parents

and siblings was encouraged in instances where additional family were present during interview process.



After the transcription process the interview content was analyzed and the thematic elements of each interview

were identified in accordance with constant comparison (Strauss & Corbin, 1992). After the initial open coding of

the individual interviews, the transcripts were compared and consistent themes among the interviews were

labeled and analyzed. The initial themes were discussed and confirmed by another researcher familiar with the

study. Selective coding then followed whereby the theoretical linkages among the themes were explored.








RESULTS


Four themes emerged from the coding process: a) the need for social interaction and support, b). concerns

regarding body image, c) the need for respect and privacy from medical personnel, and d) the need for

age appropriate leisure options in the hospital setting.



Need for Social Interaction and Social Support


The importance of peer interaction has been well established during adolescence, but within the scope of

these interviews, not one participant had seen or interacted with another hospitalized peer during his or

her admission. During time when social support, acceptance, and interaction is so important, it can be an

invaluable tool for promoting adjustment to hospitalization. For example, a mother of Sara, a 20 year old

female patient stated,



"She'd like to chat with other people her age that are going through the same thing she is going through. To look

at them and see them without hair. That would probably help a lot. Talk to someone that feels sick like you feel sick."


The concerns surrounding body image and self-confidence can limit an adolescent's motivation for social

interaction, but all participants interviewed craved it just the same. All six participants stated that if there were

a program for teens their age that they would be interested in participating. Carrie, a 17 year old inpatient, and

Sara both said that the thing they were looking to most about getting home was seeing their friends and family.

Sara said simply, "I can't wait to see my friends."



The request for a separate area for teens was also a theme when asked the question, "If you could create

one activity or idea in the hospital, with no restrictions, what would it be?" For instance, the mother of Aaron, a

16 year old outpatient said,



"The treatment room down the hall is for all ages, but when the little kids start screaming and you are not

feeling good, you don't want to hear that...a separate treatment room would be great. You know, you don't hear

the older ones crying and screaming."


Likewise, James a 16 year old, said he would create a teen lounge with, "a pool table, pin ball, and all of that.

That would be really cool." Sara's Mom agreed and had this to say about a separate area for adolescents,



"Now that she's getting better I can get her up in a wheelchair and get her up and out, but there is no where to

take her. All they have is a playroom here with a couple of aquariums and some toys. So I take her outside, and

she likes to go outside and look at the trees and stuff, but there is no interaction. I mean what do I do when I




am able to take her places, there is no where to take her."


With no peer interaction in the hospital setting, transition back into social life outside of the hospital walls could

be daunting, scary, and overwhelming for an adolescent that has so much of his or her self-concept hinged on

the acceptance of a peer group. Sara was highly medicated during the interview, but her mom said this on

her behalf,



"One of her fears is what happens after the hospital, where is she going to go from here? How am I going to

be physically and emotionally? Her friends have moved on, there's a life that has kept going without her for 5, 6,

7 months. She is going to go to rehab after this, and then it is going to be even more. So close to a year has gone

by and life has just passed her, and how does she get back into it. And she is afraid of that.


Concerns Regarding Body Image


All six of the interviewees had some outward physical characteristic that was related to their diagnosis. While

their diagnosis was not specifically discussed or disclosed, their responses to questions reflected the reality of

dealing with a visible and noticeable medical condition. While the interview guide did not directly address body

image in any of the questions, the theme emerged naturally through the responses of patients and their

parents, which demonstrates just how important it is among hospitalized adolescents.



James spoke of his embarrassment in response to the large groups of medical residents coming into his room

and asking him to take his socks off to examine his feet. James said, "I have had doctors come in and they want

me to take my stockings off and sometimes, you know, I just don't feel like it. They keep pushing me. And you

know, no should be enough."



The concerns surrounding body image certainly affect their willingness to interact with their peers and to take part

in recreational activities out of their hospital room. If the body image element is not addressed or

acknowledged, these adolescents may miss out on the critical social component of hospitalization.



Carrie and Sara both made references to losing their hair. Sara's mom addressed Sara's scars and left-side

paralysis. Aaron spoke of his inability to get up and play football with his friends anymore. Within each

interview there were undertones and references to the effect the change in outward appearance had made on

their lives.



Need for Respect and Privacy from Medical Personnel


The privacy needs for an adolescent are sometimes overlooked by medical personnel in a pediatric setting. So

many of their patients are too young to care about knocking before entering and revealing examinations,

that sometimes adolescent patients are put in uncomfortable positions. Additionally, giving adolescents the ability

to advocate for themselves in the hospital is an invaluable tool as it can provide them with an increased perception





of control which can in turn reduce anxiety in the hospital setting.


James speaks of his frustration regarding the large groups of medical students that come into his room at once,

and their lack of information when they arrive:



"As far as like, and I understand this is a teaching hospital, but the residents, whenever they come in, I mean its

like every time they want to know what's wrong, but there's a chart right in front of them. Also, there could be one

or two that come into our room at a time, but when they all come in it makes you feel like you're on display

or something."


Carrie's reaction to the frequent intrusions into her room was, "Yeah, when I change I stand right behind the door

so no one can come in." Carrie's reaction is not uncommon as many teens feel that their hospital room is not

a private or personal space. Also many teen age girls feel very self conscious about their bodies and this lack

of privacy appears to be magnified in the hospital setting.



Sara's mom speaks of the benefit of having nurses that are around the same age as her daughter, as it seems

they are more receptive and understanding of her needs. They can provide support not only by giving good

medical care, but by being peer who truly understands what Sara is going through.



Need for Age Appropriate Leisure Options


The need for and benefit of leisure during adolescence has been well established. A healthy leisure lifestyle can

result in decreased anxiety and stress, increased self-determination, improved sense of identity, and provide a

sense of normalcy in the hospital setting. Overwhelmingly the interviews showed a lack of age appropriate

leisure options, and the effects that their absence had on their hospital admission. Aaron's mom stated,



"I think that they just take for granted that they are older and they can find something to do, either their

family brings them a book or something like that to occupy their time, but there is only a playroom and resources

for the little ones."


For an adolescent, electronics are a major interest. Every single interviewee stated the need for DVD players in

their room, and a movie selection that had age appropriate movies. Currently, only G movies are offered in

the inpatient setting. The need for laptops also came up as the Internet can provide not only accessible contact

with peers outside of the hospital setting, but also provide a sense of normalcy and a link to the outside world.



Music also provided commonality between each of the participants. While their music tastes varied, each

participant could defend their favorite artist and preferred musical style. Three of the participants participated in

band at their school, and Carrie stated that playing in the band during football games was one of the things she

was missing out on while she was in the hospital. Four of the participants said that music was something they used





to cope with being in the hospital, implying the importance of this particular leisure component.



When asked to create any activity they wanted in the hospital setting, many responses were centered on

changing their environment. Carrie stated, "Get rid of the white walls, let the kids paint them...I mean you've got

a picture of a kite and colored pencils. Not only are those things not interesting to look at, but they are little

kid things." Sara's mom stated,



I think they should cater the environment to the patient. I think the environment should be age appropriate. I

think this is cute, but it is not appropriate for her. I think there should be a Gwen Stephani poster on the wall,

or something that would allow the room to be interchangeable for different patients, depending on their age.



Making their environment their own may provide a leisure activity that focuses around self-determination,

control, and decision making.



DISCUSSION


The importance of peer acceptance in adolescents is well documented and understood. Adolescents form their

identity through the outside influence of peer interactions, which is a critical element in the developmental tasks

of adolescents (Kidwell, 1995). These interviews supported the idea that hospitalized adolescents crave

this acceptance and interaction as much, if not more, than their healthy peers (Stevens, 1989). Juxtaposed with

the desire for social interaction, the interviews also supported the reality of social isolation in the hospital setting

as all six interviewees had not interacted with other patients their age during their admission. However, there may

be constraints to social interaction that should be addressed. Heightened concern over body image may decrease

an adolescent's motivation and/or comfort with interacting with peers. Providing a space that allows for safe

social interaction could stimulate that motivation, and provide the social support and interaction that

hospitalized adolescents so desperately need (Francis et. al, 1988).



Also related to a heightened concern over body image is the idea of privacy and self-advocacy in the hospital

setting. The need for privacy in the hospital setting can be amplified by concern surrounding their

appearance. Connected to the heightened need for privacy is the adolescent's ability to advocate for their needs

in terms of privacy and space. An adult caretaker may be unaware of the appropriate limits for an adolescent

patient if those limits are not communicated effectively by the patient. The ability for an adolescent patient

to advocate for themselves stretches beyond their need to ask for their space and set limits for their privacy;

self advocacy penetrates deep into the medical processes for these patients.



Three of the interviewees made references to the need for privacy and respect in the hospital setting, and

all interviewees spoke of the need for an age appropriate hospital environment. Adolescents as a generalized

group are developmentally able to reason abstractly and can understand and interpret the accurate causes

and implications of their conditions (Boice, 1998). Constraints that can limit adolescents' ability to advocate






for themselves can be a lack of medical information to make decisions with, over involvement of parents in

decision making, and the potential for feeling anxiety surrounding asserting their opinion to authority figures and/

or parents (Burghen et. al, 2004).



The need for leisure in the hospital setting was undoubtedly the most highly vocalized request among all six of

the interviewees. Age appropriate leisure and recreational activities and experiences can provide an adolescent with

a sense of normalcy, connection to the outside world, and increased accessibility to social support

through technology, and the participants voiced the need for changes in this area. All six interviewees also

addressed their use of music as a coping mechanism while in the hospital, providing a tangible and

realistic implication for practice. Four out of the six participants asserted their desire for a separate area that

could better meet their social, physical and leisure needs while in the hospital. There are obviously constraints

in terms of the financial and realistic view in making these leisure options more accessible to adolescents;

however, the need for changes in this area cannot be understated.



SUGGESTIONS FOR FUTURE RESEARCH


The first implication for future research is to conduct a similar needs assessment on a larger scale. This study

was conducted recruiting participants from two different recruitment pools: children referred to the palliative

care program, and the other being an outpatient environment. Oftenthe patients referred from palliative care

were asleep, medicated, or in too much pain to take part in the interviews. The outpatient population, after

being referred to the study, were often discharged before the interview could take place. These were the two

major obstacles on patient recruitment for this study, and due to these constraints only six interviews

were conducted.



While the constraints to the provision of leisure resources and interventions have been briefly addressed in terms

of social, body image, advocacy and leisure interests themselves, the reality of these constraints warrant

further research. While the developmental process of the adolescent years is very well researched and

documented, the implications for these developmental tasks in a hospital setting have not been directly

addressed empirically. The design of age appropriate medical care and treatment interventions is contingent on

the knowledge of how hospitalization directly affects development.



CONCLUSION


The purpose of this study was to provide hospitalized adolescents with the opportunity to give a voice to the

research that suggested that their emotional, social, and physical needs were unique and deserved

special consideration. Based on each of their individual experiences, individual diagnosis, and individual

backgrounds, common thematic elements from their interviews emerged, thereby supporting the contention that

the needs of hospitalized adolescents can be generalized and these needs require addressing. Through the





interviews, social isolation, concerns regarding body image, the need for privacy, and the need for age

appropriate environment and leisure options were addressed.



The findings of this study support the literature with the thoughts and experiences of six individual and unique

voices. Francis et al. (1988) identified the need for and the benefits of age appropriate environments and a

separate space for adolescents; the participants agree and outwardly spoke of their frustration surrounding

their childish surroundings. Likewise, Stevens (1989) found that social support was crucial for effective coping

to hospitalization; the participants of this study agree unanimously. Denholm (1988) stated that body image

was negatively affected when medical conditions brought about changes that were outwardly visible; all

six participants made reference to the physical limitations of their condition, and the way that these

limitations affected their lives. Finally, Phoenix (2001) suggests that Therapeutic Recreation is well equipped

to promote identity formation in adolescents and provide the functional outcomes related to these services. Based

on these interviews, Therapeutic Recreation interventions seem more than adequately suited to meet the needs

of these individuals. The hope is that this study provides a unique glimpse into the self-stated needs and

issues surrounding hospitalized adolescents and will stimulate further research on this topic, as it is too important

to ignore.






REFERENCES


1. Boice, M. (1998). Chronic Illness in Adolescence. Adolescence, 33(132), 929-939.

2. Burghen, E., Haluska, H., Steen, B., & Hinds, P. (2004). Children and Adolescents Participating in Research

and Clinical Care Decisions at the End of Life. Journal of Hospice & Palliative Nursing, 6(3), 176-186.

3. Caldwell, L. (2001). Exploring the Leisure Behavior Patterns and Experiences of Youth with

Endocrinological Disorders: Implications for Therapeutic Recreation. Therapeutic Recreation Journal, 35(3), 236-249.

4. Denholm, C. (1989). Reactions of Adolescents Following Hospitalization for Acute Conditions. Children's Health

Care, 18(4), 210-218.

5. Ferron, C. (1997). Body Image in Adolescence: cross-cultural research-results of the preliminary phase of

a quantitative study. Adolescence, 32(127), 735-743.

6. Francis, S., Myers-Gordon, K., & Pyper, C. (1988). Design of an Adolescent Activity Room. Children's Health Care,

16(4), 268-271.

7. Kidwell, J. (1995). Adolescent Identity Exploration: a test of Erikson's theory of transitional crisis. Adolescence,

30(120), 785-793.

8. Mogtader, E., & Leff, P. (1986). 'Young Healers': Chronically Ill Adolescents as Child Life Assistants. Children's

Health Care, 14(3), 174-178.

9. Pawelko, K. (1997). Leisure Well Being Among Adolescent Groups: time, choices, and self-determination. Parks






and Recreation, 32(7), 28-39.

10. Phoenix, T. (2001). Who am I? Identity Formation, Youth, and Therapeutic Recreation. Therapeutic

Recreation Journal, 35(4), 348-356.

11. Pinckney, R. (2004). Adjustment Difficulties of Adolescents with Sickle Cell Disease. Journal of Child and

Adolescent Psychiatric Nursing, 17(1), 5-12.

12. Shaw, S, Kleiber, D. & Caldwell. (1995). Leisure and Identity Formation in Male and Female Adolescents:

a preliminary examination. Journal of Leisure Research, 27(3), 246-263.

13. Stevens, M. (1989). Coping Strategies of Hospitalized Adolescents. Children's Health Care, 18(3), 163-170.

14. Wong, D. (1996). Wong and Whaley's Clinical Manual of Pediatric Nursing, 4th ed. St. Louis, Lippincott-

Raven Publishers.





--top--



Back to the Journal of Undergraduate Research




College of Liberal Arts and Sciences I University Scholars Program I University of Florida I| ULP UNIVERSITY of
SUrFLORIDA
UThe oFFrii,;ifS Gan svle FF r G4ler 3 1 5 )i6T
� University of Florida, Gainesville, FL 32611; (352) 846-2032.