Brief report: An online support intervention: Perceptions of adolescents with physical disabilities

Journal of Adolescence 34 (2011) 795–800

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Brief report: An online support intervention: Perceptions of adolescents with physical disabilities Miriam Stewart a,1, Alison Barnfather b, *, Joyce Magill-Evans c, 2, Lynne Ray d, 3, Nicole Letourneau e, 4 a

Faculty of Nursing and School of Public Health, 700 University Terrace, University of Alberta, Edmonton, Alberta T6G 2T4, Canada Social Support Research Program, 5-22 University Terrace, University of Alberta, Edmonton, Alberta T6G 2T4, Canada c Department of Occupational Therapy, Corbett Hall, University of Alberta, Edmonton, Alberta T6G 2G4, Canada d Faculty of Nursing, 7-36 University Terrace, University of Alberta Edmonton, Alberta T6G 2T4, Canada e Faculty of Nursing and CRISP, PO Box 4400, University of New Brunswick, Fredericton, New Brunswick E3B 5A3, Canada b

a b s t r a c t Keywords: Adolescents Motor disabilities Social support Online intervention Peer mentors

Adolescents with cerebral palsy and spina bifida report restricted interactions with peers and gaps in social support. A pilot online support intervention offered interactions with peers. Five mentors with cerebral palsy or spina bifida and 22 adolescents with the same disabilities met weekly online for 25 group sessions over six months. Participants completed quantitative measures of loneliness, sense of community, self-perceptions, coping, and social support prior to intervention, post-intervention, and delayed postintervention. Semi-structured qualitative interviews elicited perceptions of the intervention’s impacts. Participants reported more contact with teens with disabilities, decreased loneliness, and increased social acceptance and confidence. A significant increase in sense of community was reported from post-intervention to delayed post-intervention. Encouraging qualitative findings were supported by trends in the quantitative measures. This pilot study can guide a future community-based intervention trial. Ó 2010 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved.

Globally, 180 million young people between the ages of 10 and 24 live with impairments (Groce, 2004) that can compromise their physical, social, and emotional health, and present challenges to families health, social and educational systems (Newacheck & Halfon, 1998). They are more likely to face exclusion, disadvantage, and abuse (Canadian Council on Social Development, 2001b). Spina bifida and cerebral palsy limit mobility and socialization of adolescents (Eliasson, Krumlinde-Sundholm, Shaw, & Wang, 2005; Singh, 2003). Spina bifida affects one in 1000 children in North America (Clancy, McGrath, & Oddson, 2005) resulting in lifelong challenges such as paralysis, incontinence, and learning disabilities (Singh, 2003). Cerebral palsy results from brain damage (Kennes et al., 2002) and is a childhood movement disorder (Robertson, Svenson, & Joffres, 1998). Significant limitations with moderate to severe cerebral palsy (Scrutton, 2000) affect participation in self-care, school, and recreation (Eliasson et al., 2005). * Corresponding author. Tel.: þ1 780 903 8422; fax: þ1 780 492 8045. E-mail addresses: [email protected] (M. Stewart), [email protected] (A. Barnfather), [email protected] (J. MagillEvans), [email protected] (L. Ray), [email protected] (N. Letourneau). 1 Tel.: þ1 780 492 8030; fax: þ780 492 8045. 2 Tel.: þ1 780 492 0402; fax: þ780 492 4628. 3 Tel.: þ1 780 492 7558; fax: þ780 492 1926. 4 Tel.: þ1 506 458 7647; fax: þ506 453 4565. 0140-1971/$ – see front matter Ó 2010 The Foundation for Professionals in Services for Adolescents. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.adolescence.2010.04.007

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Medical advances allow children with physical disabilities a longer lifespan but increase the risk of secondary conditions (Kalnins et al., 1999) from poor coping behaviours and limited physical activity. Youth with disabilities are at risk for behavioural problems and social challenges (Lavigne & Faier-Routman, 1993). Less positive social interactions with peers, physical inaccessibility, and limited transportation hamper participation (Canadian Council on Social Development, 2001a). Adolescents with spina bifida reported smaller social networks than healthy youth and those with diabetes or cystic fibrosis and relied less on peers to help them cope (Ellerton, Stewart, & Ritchie, 1996). Tested support interventions for adolescents with spina bifida or cerebral palsy involving peers were virtually nonexistent despite restricted social interactions, support gaps, lower self- esteem, coping challenges, and loneliness (Ritchie et al., 2000; Singh, 2003). Despite benefits of peer support for persons with chronic conditions (Barlow & Ellard, 2004; Kyngas & Rissanen, 2001), limitations in mobility and speech impede face-to-face or telephone communication with peers. Internet technology can enhance access to peer support (Weinert, Cudney, & Winters, 2005). This study examined influences of a pilot computer-mediated peer support intervention on adolescents’: (1) interaction with teens with disabilities via internet, (2) social network size and composition, (3) loneliness and social isolation (4) support -seeking as a coping strategy, (5) self perceptions, and (6) sense of community. Methods Participants Adolescents met the following criteria: (1) diagnosis of spina bifida or cerebral palsy, (2) 12–18 years, (3) used computer with modifications if necessary, and (4) parent-reported grade 6 reading level and IQ greater than 80. They were recruited through service agencies and associations in Alberta, Canada. Procedures The intervention lasted six months. Three female and two male mentors with cerebral palsy or spina bifida, ages 22 to 39, were facilitators. Two psychologists were available to manage challenging issues. The Internet technologies included electronic mail, message boards, and chat rooms integrated under the Ability OnlineÒ interface (free Internet community for young people with disabilities). Adolescents and mentors met weekly in chat rooms for 60–90 min over 25 sessions. On average, adolescents attended 8.5 group sessions (SD ¼ 5.8). Topics included living independently, health concerns, bullying, making friends, career planning, traveling, sports, and building relationships. Adolescents completed standardized measures during a pre-intervention home visit and by telephone at post-intervention and 3 months later, receiving $20 each time. Telephone interviews also elicited adolescents’ perceptions of the intervention at post- and delayed post- intervention, including its influence on coping, self- perceptions, loneliness, friendships, family, and continuing relationships with group members. These qualitative data complemented quantitative data from standardized measures and illuminated perceived outcomes. Measures Loneliness and social dissatisfaction scale (Asher, Hymel, & Renshaw, 1984). This 24 item measure assessed peer relationships. Sixteen items focused on loneliness, social adequacy and peer status and eight addressed hobbies or activities with a 5point rating scale (“always true” to “not true at all”). Factor analysis indicated one primary factor. Scores were associated with number of friends and peer status. Internal consistency was .90 (Asher, Parkhurst, Hymel, & Williams, 1990) and .88 for this study. Self report coping scale – seeking social support subscale (Causey & Dubow, 1992). This subscale, defined using factor analysis, has nine items with a 5-point Likert scale from never (1) to always (5). Internal consistency was .84 (Causey & Dubow, 1992) and .75 in this study. Sense of community scale (Bachrach & Zautra, 1985). The 7 item scale was modified slightly to assess attachment to online support group, perceived similarity to members, and satisfaction with group. The 5-point rating scale ranges from 1 (not at all) to 5 (definitely) with higher average scores (maximum of 5) being more positive. Internal consistency was .76 (Bachrach & Zautra, 1985) and .83 in this study. What I am like: Self perception profile for adolescents (Harter, 1988). This scale assesses adolescents’ perceived functioning on 9 subscales (45 items), defined using factor analysis. Only social acceptance and self-worth are reported. Each item was rated from 1 to 4 with higher scores indicating positive self-perceptions. Rigorous psychometric testing (Harter, 1988) includes internal consistencies of .74–.92. Children’s inventory of social support (Wolchik, Ruehlman, Braver, & Sandler, 1989). This measure assesses perceptions of source, amount, and type of social support and satisfaction with support received for 8–15 year olds. Teens named people who had helped them in the past 6 months. Internal consistency coefficients of .79–.90 and test retest reliabilities of .52–.85 are reported.

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Analysis Interviews were transcribed and transferred into FolioVIEWSÔ for data management (Ray, 1997). Data were grouped by questions asked and then subjected to inductive thematic analysis (Kvale, 1996). Quantitative data were analyzed using repeated measures of analysis of variance with LSD post hoc comparisons. Results Twenty-seven teens completed pre-test measures; four did not attend online sessions and one was not available at delayed post-test. The remaining 22 participants included 12 males and 10 females, ages 12–18 years (M ¼ 14.6, SD ¼ 1.6). Equal numbers had cerebral palsy (n ¼ 11) or spina bifida (n ¼ 11). Most attended public school. Internet use Participants reported more contacts with teens with the same disability over time, F (2,19) ¼ 9.91 (Table 1). There were significantly more contacts with teens with a different disability (F (2,19) ¼ 2.59, p ¼ .10) from pre- to post-test only. Social networks At pre-test, network size ranged from 5 to 28 people (Table 1). Networks included family and non-family members (e.g., teachers, coaches, classmates, friends). Twelve participants communicated more with family at post-test. Eight reported ongoing electronic contact with group members following completion of chat sessions. The teens learned strategies for communicating. “Certain things that I’ve talked about in the peer group, I’m talking about it more in my family; I’m not keeping things to myself” [SB-51]. They discussed session topics, and understood their family more. “It just showed me how other people deal with their family members and kind of helps me.” [CP-09]. “It helped me so I wouldn’t get so mad all the time” [CP-07]. While communication changed, most adolescents denied effects on family relationships. Fifteen adolescents reported enhanced pre-existing friendships as they “figure(ed) out who my true friends were,” and “gave me some different things to discuss with my friends.” Three teens thought increased confidence made it easier to “reach out” to able-bodied peers. One felt “more accepted, ’cause..I knew I had friends on the Internet. Especially in junior high, ’cause I was the only one that was really “different,” and now I know that I have someone else” [SB-52]. Loneliness and social isolation At pre-test, the mean score did not reflect marked loneliness although four teens did report significant loneliness (scores of 45 or higher). On average, scores for teens decreased although not significantly, F (2, 20) ¼ .69. Fourteen adolescents reported that they could talk to others with similar experiences. “When I was doing the chats, I was involved with the conversation, and I wasn’t thinking about [loneliness].” “[The chats] made me realize that I’m not alone; like with my disability .there’s lots of people out there that go through the exact same thing as I do” [CP-04]. Table 1 Means and standard deviations for measures of intervention impact (N ¼ 22). Pre-test M (SD)

Post intervention M (SD)

Delayed Post test M(SD)

P-value for Time

Size of Social Network Negative Interactions

14.3 (5.6) 2.5 (2.1)

14.1 (5.6) 2.0 (1.7)

12.5 (6.5) 1.9 (2.4)

p ¼ .24 p ¼ .50

Uses internet to connect with peers with: Same disabilitya, b Different disabilitya Seeking Social Support* Loneliness & Dissatisfaction** Sense of Communityc

n¼3 n¼5 27.1 (5.1) 33.5 (9.8) 26.2 (5.7)

n ¼ 13 n ¼ 12 26.8 (5.3) 32.3 (7.3) 25.6 (4.7)

n ¼ 10 n ¼ 10 27.3 (6.6) 31.3 (8.2) 27.8 (4.5)

p p p p p

Self-Perception Profile*** Self-worthc Social Acceptanceb

16.7 (2.5) 13.0 (4.9)

15.7 (3.8) 14.5 (3.9)

17.0 (3.0) 15.1 (3.9)

p ¼ .08 p ¼ .12

a

Pretest score significantly different from post-test. Pretest score significantly different from delayed post-test. Post-test score significantly different from delayed post-test. *maximum score ¼ 40; **maximum score ¼ 80; ***maximum score ¼ 20.

b c

¼ ¼ ¼ ¼ ¼

.001 .10 .83 .51 .009

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Coping strategies Quantitative scores did not change significantly over time (Table 1). However, adolescents felt the intervention helped them deal with negative feelings and be more patient and happy. Two teens explained: “just talking with people, you know it takes the stress off you.Cause other people were aware of your problems and you didn’t always have to keep it inside” [SB59]. “It helped me cope better with loneliness and stuff” [CP-21]. Coping strategies learned included: “not to blow up at people,” “try and talk calmly,” and “don’t let things bother me as much.” Twelve adolescents learned to cope with a disability. Six described managing mobility, access and transportation issues. Eight participants with spina bifida learned about their disability such as “[I learned] more about my disability. Like, what caused it and stuff” [SB-74].

Self-perceptions and confidence Social acceptance scores increased over time although not significantly, F (2, 20) ¼ 2.31. As the pre-test means fell within one standard deviation of the normative mean, marked effects were not noted immediately following the intervention. Qualitatively, increased confidence (n ¼ 8), described as decreased shyness and increased ability to talk with others, was attributed to the safe environment and role modeling. “It gave me confidence that.people were being successful. just to have confidence in myself, and that confidence pays off” [CP-17]. “They made me come out of my shell, because before this whole chat thing, I was very shy” [SB-73]. For seven participants, self awareness was enhanced through social comparison. “It helped me understand a bit more about myself and my limitations and my goals” [CP-09]. “The online chats made me have a better attitude towards life.knowing that there were other people like me out there” [CP-18]. “It gave me a different way of looking at life through other people’s eyes” [CP-09].

Sense of community Scores increased over time, F (2, 20) ¼ 5.96, p ¼ .009 with a significant difference from post- to delayed post-intervention (Table 1). Many participants observed that their social world did not previously include others with disabilities. The intervention helped them understand disabilities. “That it’s got a sense of community. that everybody respects everybody; . and you can talk about everything and anything.. Some people disagree with you, but they don’t bark at you” [CP-15].

Table 2 Means and standard deviations for measures of intervention impact by gender. Pre-test M (SD)

Post intervention M (SD)

Delayed Post test M (SD)

Size of Social Network Males (n ¼ 12) Females (n ¼ 10)

12.7 (4.4) 16.2 (6.5)

12.2 (5.2) 16.5 (5.4)

10.5 (5.8) 14.8 (6.7)

Negative Interactions Males (n ¼ 12) Females (n ¼ 10)

2.3 (1.6) 2.7 (2.8)

1.9 (2.0) 2.0 (1.3)

2.2 (3.1) 1.6 (1.3)

Seeking Social Support* Males (n ¼ 12) Females (n ¼ 10)

25.2 (5.9) 29.1 (3.3)

25.6 (5.2) 28.7 (5.2)

25.8 (6.8) 29.7 (6.0)

Sense of Community Males (n ¼ 12) Females (n ¼ 10)

25.7 (6.9) 26.9(4.3)

23.9 (5.3) 27.6 (3.0)

26.1 (5.0) 29.8 (2.9)

Loneliness & Dissatisfaction** Males (n ¼ 12) Females (n ¼ 10)

35.4 (9.6) 31.2 (10.1)

34.3 (7.2) 29.8 (7.0)

33.0 (9.2) 29.3 (6.7)

16.8 (2.4) 16.5 (2.7)

16.2 (3.2) 15.2 (4.5)

17.3 (3.1) 16.7 (3.0)

11.8 (4.9) 14.4 (4.8)

14.0 (4.0) 15.0 (3.9)

14.7 (4.5) 15.5 (3.2)

Self-Perception Profile Self-worth Males (n ¼ 12) Females (n ¼ 10) Social Acceptance Males (n ¼ 12) Females (n ¼ 10)

*maximum score ¼ 40; ** maximum score ¼ 80.

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Table 3 Means and standard deviations for measures by diagnosis. Pre-test M (SD)

Post intervention M (SD)

Delayed Post test M(SD)

Size of Social Network Teens with SB (n ¼ 11) Teens with CP (n ¼ 11)

14.9 (6.1) 13.6 (5.4)

12.9 (6.5) 15.4 (4.6)

11.6 (6.4) 13.3 (6.7)

Negative Interactions Teens with SB (n ¼ 11) Teens with CP (n ¼ 11)

2.3 (1.9) 2.7 (2.4)

1.8 (1.6) 2.1 (1.8)

2.6 (3.1) 1.2 (1.1)

Seeking Social Support* Teens with SB (n ¼ 11) Teens with CP (n ¼ 11)

25.9 (5.2) 28.4 (4.9)

25.7 (5.8) 28.3 (4.7)

26.2 (6.9) 29.0 (6.3)

Sense of Community Teens with SB (n ¼ 11) Teens with CP (n ¼ 11)

27.8 (4.0) 24.6 (6.9)

26.7 (3.9) 24.5 (5.4)

27.9 (4.0) 27.6 (5.1)

Loneliness & Dissatisfaction** Teens with SB (n ¼ 11) Teens with CP (n ¼ 11)

31.6 (10.2) 35.4 (9.5)

30.9 (7.4) 33.6 (7.3)

30.2 (8.0) 32.5 (8.6)

15.6 (2.5) 17.8 (2.0)

14.7 (4.4) 16.7 (2.9)

16.4 (3.2) 17.6 (2.8)

14.6 (4.0) 11.4 (5.4)

15.3 (4.0) 13.6 (3.7)

15.5 (4.0) 14.6 (3.9)

Self-Perception Profile Self-worth Teens with SB (n ¼ 11) Teens with CP (n ¼ 11) Social Acceptance Teens with SB (n ¼ 11) Teens with CP (n ¼ 11) * maximum score ¼ 40 ** maximum score ¼ 80. SB ¼ Spina Bifida CP ¼ cerebral palsy.

Other descriptive findings: gender, disability, and age Gender should be considered in future research (Table 2). Males attended fewer online sessions (M ¼ 6.8, SD ¼ 5.2) than did females (M ¼ 10.5, SD ¼ 6.1) who posted significantly more messages. Males had smaller social networks, lower social acceptance and sense of community, more loneliness, and sought support less. The intervention may appeal more to females or there may be an interaction with age as males were younger (M ¼ 14.2) than females (M ¼ 15.2). Diagnosis should be considered. Adolescents with cerebral palsy identified more negative interactions in social networks; however, negative contacts decreased after intervention (Table 3). They sought support more as a coping strategy and reported more loneliness. Discussion All but two males viewed their experience with the online peer support intervention positively. The qualitative data revealed intra-personal, inter-personal, and social intervention benefits. Specific benefits varied across individuals and were not readily captured by quantitative questionnaires due to the small sample size which limited power and the wide age range which increased variability. The standardized measures may not be sensitive to changes reported qualitatively, highlighting the importance of using mixed quantitative and qualitative methods when testing new interventions. The intervention was described as “a learning experience, and a way to meet people with the same disability, and to share the knowledge that they possess with you, for you to share what you know with them, . in time, making friends with people that have the same interests” [CP-17]. For adolescents minimally affected by disability and for those with severe disabilities that impeded full participation, benefits are more difficult to assess. This intervention will interest service providers supporting adolescents with chronic health conditions. A community intervention trial that further tests and refines this intervention could inform new programs. Acknowledgements We would like to thank all the young participants and their families for taking part in this study. Their willingness to commit to a nine month process was critical to the success of this research project. We are also grateful to the peer mentors who gave their time and shared their personal experiences. The research assistants Rachel Campbell, Amanda Almond, Jenny Burnside, Jodi Cullum, and Neera Datta interviewed participants at all three time points in Edmonton and Calgary. Christine Daum and Elaine Greidanus assisted with the qualitative data analysis, and Krista Hungler and Sharon Alexander facilitated quantitative data analysis and assisted with the final report.

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