Orly Sarid, Dorit Segal-Engelchin, and Ora Bitan
Abstract
Purpose: To determine the effectiveness of a cognitive-behavioral (CB) group intervention for the well being of adolescents and young adults with Cerebral Palsy (CP).
Methodology: Sixteen adolescents and young adults with CP completed the short form of the Sense of Coherence scale (SOC), Beck Depression Inventory (BDI), and the Systemic Quality of Life Questionnaire (QOL). Data were collected prior to the intervention (t1) and at the termination of the intervention twelve months later (t2). The study group consisted of 8 participants in a CB group, and the comparison group consisted of 8 participants in a social peer group.
Results: Wilcoxon signed rank test for pre-post effects within each group showed that the CB group intervention was more effective than the social peer group in decreasing depressive symptoms and in enhancing SOC, physical, and cultural quality of life. At the end of the year, not only did the peer social group show no improvement in the psychological indices, but the depression level of the participants in this group had risen.
Conclusions: The results suggest that a CB group intervention may be more beneficial for the well being of young adults with CP. Further research is required to examine the generalizability of the current findings and to investigate the long-term effects of CB group interventions.
Introduction
Incorporating severely handicapped young adults within the community is a complex task which seeks to integrate the individual needs and aspirations, and the options provided by the environmental-organizational system (Kingsnorth, Healy, & Macarthur, 2007). Severely handicapped young adults report the struggle to enhance their quality of life (Kothari, 2004) and to lead a normal life. Nevertheless, research indicates that they are at risk to develop depression, being psychologically distressed (Gaynes, Burns, Tweed, & Erickson, 2002; Hack, 2006) and exhibiting pessimism and passivity (Long, & Sangster 1993).
Disability presents an ongoing problem for the individual and might introduce disorder and ambiguity into the psychological, physical, and social life of the individual (Albrecht & Devlieger, 1999). Nonetheless, several studies suggest that disabled persons often experience good quality of life despite their considerable impairments (Agarwal & Lim, 2003). Thus, an important question concerns the factors that shape the quality of life of disabled persons.
Previous studies showed that factors which increase adaptation and well being among disabled young adults were physical mobility and control of symptoms (McCracken, MacKichan, & Eccleston, 2007; Modrego, Pina, Simon & Azuara, 2001), being socially (Antle, 2004; Crocker & Bouffard, 1992) and culturally active (Magill-Evans, Darrah, Pain, Adkins, & Kratochvil, 2001; Stevenson, Pharoah, & Stevenson, 1997), and possessing psychological resources such as a strong sense of coherence (SOC) (Schnyder, Bchi, Mrgeli, Sensky, & Klaghofer, 1999).
The concept of SOC, as developed by Antonovsky (1987), portrays the degree to which a person perceives the world, and the inevitable stressful events he/she encounters, as comprehensible, manageable, and meaningful challenges worth overcoming. Persons characterized by a strong SOC tend to be less anxious, less depressed, and have more positive emotions (Drory, Kravetz, & Florian, 1999; Gibson & Parker, 2003; Heiman, 2004).
In theory, the dynamic process through which life experiences shape one's SOC largely ceases during young adulthood. After this stage in life SOC is supposed to become a relatively stable trait, which may fluctuate in reaction to life experience (Antonovsky, 1987). Nevertheless, several studies indicate that the level of SOC may be substantially influenced by various lifetime events (Flensborg-Madsen, Ventegodt, & Merrick, 2005). Indeed, Berger et al. (2007b) report in their recent study of university students, that the experience in a semester of cognitive- behavior course has enhanced their SOC and decreased their negative affect (Berger, Sarid, Hurvitz, & Anson, 2007b).
Cognitive-behavioral (CB) group interventions have also been found to impact the well being of disabled persons suffering from fibromyalgia (Redondo, 2004), type 2 diabetes mellitus (Berger, Gidron, Harman-Boehm, Dekel, Shwartzman, & Sarid, 2007a), and multiple sclerosis (Mohr, Hart, & Vella, 2007).
CB group interventions for children and adolescents have been carried out to increase knowledge of disability and to increase psychological adaptation (Hains, Davies, Behrens, & Bilber, 1997). Findings show that the group setting gives participants opportunities for modeling, problem solving, helping others, and relating to peers who share similar circumstances, all of which are more difficult to arrange through individual therapy (Gilbert, 1990; Plante, Lobato, Engel, 2001; Schaefer, 1999).
Peer social groups are usually provided by non formal organizations. The major aims of this group type include: expanding participants' adjustment processes (Damiano, 2006; Viemero & Krause, 1998), information sharing, mutual problem solving, provision of social support, expression of feelings, catharsis, and empathy (Munn-Giddings & McVicar, 2007). Participation in peer social groups enables disabled young adults to socialize with other people who understand and share one's unique experiences and challenges with illness/disability. As such, these groups can be psychologically comforting and instrumentally useful (Plante et al, 2001).
To the best of our knowledge none of the former studies compared the influences of CB groups versus peer social groups on young adults with CP exploring psychological factors. Thus, it is not clear whether one of these group types is preferable over the other in terms of promoting the well-being of young adults with CP. The need to identify effective interventions for the promotion of the well being of severely disabled young adults served as the rationale for the present study.
The aim of the study was to test the effectiveness of a CB group intervention versus peer social meetings on several psychological indices. Given the findings indicating the important role that SOC plays in shaping one's well-being, as well as the findings associating CB experiences with SOC, the current study followed up the SOC of these two groups. Depression and quality of life are used as measures of well being.
The systemic quality of life model
The quality of life concept used in our study is based on the Systemic Quality of Life Model developed by Shye (1979, 1989). The model is based on the notion that all human individuals operate in four fields: psychological, physical, social, and cultural. It maintains that the human individual functions in each field via four distinct modes, named the expressive, adaptive, integrative, and conservative. Using Guttman's (1957) facet theory, the model defines the fields of function and the modes of function as two facets of the human individual's quality of life. These facets form the basis for a two-faceted definition of human life quality, which holds that the quality of life of a person is defined by the effective functioning of the individual in each of the four modes and the four fields of functioning (Shye, 1989). Effective functioning of an individual in the expressive mode includes: self-actualization in the psychological field, the ability to control his/her physical environment in the physical field, the ability to affect other people in the social field, and the expression of values in the cultural field. Effective functioning of an individual in the adaptive mode includes the ability to: rest and relax in the psychological field, satisfy his/her physical needs in the physical field, get along with other carriers of social roles in the social field, and adjust himself/herself to the values held by his/her environment in the cultural field.
Effective functioning of an individual in the integrative mode includes: a balanced personality without extereme feelings of guilt, tension, or anxiety in the psychological field, feeling physically well in the physical field, the ability to establish close relationships in the social field, and the ability to make moral judgments in the cultural field. Finally, effective functioning of an individual in the conservative mode includes: a positive self image in the psychological field,a sense of physical security in the physical field, belonging and trust in the social field, and commitment to a set of values in the cultural field. The 16 areas that are obtained from the four fields times the four modes of function form the basis for a 16-item questionnaire measuring quality of life (Shye, 1989).
Methods
Participants
A convenience sample of 16 participants, nine males and seven females, diagnosed with CP. Of the 16 participants, eight ambulated with the assistance of a walker or crutches, and eight used a wheel chair. Participants were recruited through a non-formal organization for physically disabled adolescents and young adults in Israel (BEIT-HAGALGALIM - a Hebrew phrase meaning the house of wheels). Being cognitively unimpaired was the eligibility criterion for inclusion in the sample. All participants were born in Israel except one who immigrated to Israel in her early childhood. Most of the participants (14) completed high school education while two were in their last year of high school. Age range was 18-25 with a mean of 21.2 years (SD=2.1). The majority of the participants (14) defined themselves as secular. The study was conducted in accord with the ethical standards of the regional ethics committee. All participants provided informed consent, were told that their participation in the study was voluntary, and participated throughout the year.
Procedure
The authors were asked by the non formal organization to conduct a comparative study of two different group types, a CB group versus a peer social group, that were planned to run simultaneously in its two centers. In each center, a different group intervention was proposed to all physically disabled adolescents and young adults enlisted. In both centers, all the members agreed to participate in their assigned group setting.
Data were collected from both groups at two measuring points: before the commencement of each intervention (t1), and twelve months later (t2). All participants completed pencil and paper questionnaires before the commencement of the first group meeting and then again at the end of the last group meeting. Between these two measuring points, the study-group (n=8) participated in a cognitive behavioral group, whereas the control group (n=8) participated in a peer social group.
Based on Hains et al.'s (1997) cognitive behavioral approach, the current CB group provided information and practical cognitive-behavioral concepts. Weekly meetings of three hours each included identification of irrational ways of thinking (six meetings), skills for modifying negative ways of thinking (seven meetings), learning relaxation skills (five meetings), acquiring problem solving skills, and developing assertive abilities in order to enhance participants' sense of autonomy and independence (14 meetings). These skills were acquired by the following means: (1) participants were taught the theoretical basis for cognitive restructuring and problem solving, (2) participants were encouraged to share experiences from their daily lives, involving formal and informal interactions with their social environment, in order to assist them in identifying negative and self-defeating cognitions and to highlight both positive ways of thinking and adaptive coping, (3) discussions regarding movies and short stories which present successful coping of seriously disabled persons, as means of exposure to positive coping models, (4) role plays, designed to rehearse various skills and coping strategies acquired, were practiced to better prepare the participants to cope with their daily challenges. Each meeting started with a theoretical presentation followed by practice of the relevant skill(s). The last half hour of each meeting was devoted to participants' reflections on the newly acquired skill.
The control-group had a corresponding three hours a week of social meetings with no additional cognitive behavioral intervention. The weekly sessions included information updates on social activities for disabled young adults, discussions regarding mutual problems and optional ways to broaden one's social network. Participants were encouraged to share their social experiences, and the following social skills were targeted in order to decrease isolation and improve existing relationships: nonverbal communication; starting, retaining, and ending conversations; giving and receiving compliments and expressing empathy (for example see, Barakat, Hetzke, Foley, Carey, Gyato, & Phillips, 2003).
Several elements were controlled across the study and control group. Group sessions for both settings were conducted by community-based group facilitators, who had skills and experience with disabled persons. In addition, a mental health supervisor held debriefing meetings with group facilitators after each session.
Psychological measures
1. The short form of the Sense of Coherence scale (13 items; Antonovsky, 1987, 1993). Respondents reported, on a 7-point Likert scale, the degree to which each of the 13 statements represented their attitudes. Possible scores ranged from 13-91, the highest score indicates high SOC. Cronbach's &alpha obtained for this sample was 0.76 at time 1 and 0.82 at time 2.
2. Depression was estimated by the Beck Depression Inventory (BDI), a 21 item self-report rating inventory measuring characteristic feelings, behaviors, and symptoms of depression. Students were asked to indicate, on a four point Likert scale, the degree to which each item was present or absent during the past month. The final score is the sum of the 21 responses (Beck, Ward., Mendelson, Mock., & Erbaugh,, 1961; Steer & Beck, 1996). Possible values range is 21 to 84, a higher score indicates higher levels of depression. In previous studies among the Israeli population the scale was found valid and reliable (Iancu, Horesh, Lepkifker & Drory, 2003). In the current study Cronbach's &alpha was 0.94 at time 1 and 0.88 at time 2.
3. Quality of life was assessed using the Quality of Life Questionnaire developed by Shye (1979, 1989) to tap the psychological, physical, social, and cultural components of the participant's quality of life. This questionnaire has been used in previous studies and was found valid and reliable (Davidson-Arad, Segal-Engelchin, & Wozner, 2003; Segal-Engelchin & Wozner, 2005).
The questionnaire consists of 16 items, four for each field of functioning. The questions regarding the psychological field assess the participant's degree of self actualization, ability to relax, to have a good mood, and to perceive himself/herself positively (example item: "To what extent are you able to do things that reflect your personal wishes?"). The questions included in the physical field measured the participant's ability to: control his\her physical environment, create comfortable living conditions, feel healthy and secure (example item: "To what extent do you have comfortable living conditions?"). The questions regarding the social field involve the participant's societal capability to: get along with other carriers of social roles establish close friendships, and sense a place in society (example item: "To what extent do you feel a sense of belonging to your community?"). The questions included in the cultural field tap the participant's ability to: express his\her values and beliefs, adjust himself\herself to the values held by his\her environment, feel morally wholesome, and hold stable values (example item: " To what extent are your values similar to those accepted in your social environment?"). Participants were asked to answer each question on a 7 point scale, ranging from 1 (not at all) to 7 (very much). Scores were calculated separately for each field, as the means of the four items. The alpha reliability coefficients of the four fields obtained for this sample ranged from .68 to .83.
4. Current health status - data concerning health were obtained by checking the presence of nine symptoms including: fever, aches, cold, cough, ear pain, stomach pain, diarrhea, and painful urination. Subjects were asked to report whether or not they experienced these symptoms at each of the four study points. One scale was constructed with a possible range from 0 (no symptoms) to 9 (all symptoms). The nine symptoms questionnaire was validated in previous studies (Anson Levinson, & Bonneh, 1998; Sarid, Anson, Yaari & Margalith, 2004 ).
5. Socio-demographic information: The socio-demographic questions asked about age, place of birth, level of education, and degree of religious observance - as evaluated by the participants according to the three standard categories in Israel: (1) religious; (2) traditional; and (3) secular. Degree of disability was assessed by asking participants to indicate the means by which they ambulate (walker, crutches, wheel chair).
Data Analysis
The nonparametric statistic Mann Whitney U rank test was employed to examine differences between the two groups in the research variables at the beginning of the year, and associations between the research variables were examined with Pearson correlations. Wilcoxon tests were conducted within each group separately to test pre-post differences. In addition, effect sizes were calculated for all quantitative outcome measures in both the study and the control group.
Results
As mentioned above, the participants varied in their degree of disability. In order to determine whether participants' degree of disability is associated with the research variables, a nonparametric analysis was employed. No statistically significant differences were found between the participants. This suggests that participants' degree of disability has a negligible effect on their SOC, BDI, and quality of life. It should be noted that all participants reported being healthy at both measuring points.
The correlations between SOC and BDI were quite similar in the study and in the control-group. SOC and BDI were strongly and negatively correlated across the measuring points. At both points of time, participants high in SOC reported low levels of BDI. Correlations ranged from r=-0.62, p<0.05 (t1, study-group) for SOC and BDI, to r=-0.66, p<0.01, (t2, control-group). For SOC and the four subscales of quality of life correlations ranged from r=-0.58, p<0.05, (t1, study-group) for SOC and psychological quality of life to r=-0.62, p<0.01, (t2, control-group) for SOC and cultural quality of life. The correlations between the four subscales of quality of life and BDI ranged from r=-0.65, p<0.05, (t1, study-group) for BDI and psychological quality of life to r=-0.76, p<0.01, (t2, control-group) for BDI and physical quality of life. It should be noted that none of the R-values reached 0.80, the accepted criteria for autocolinearity
Between-Group Comparison
In order to examine differences between groups at baseline, the study and control groups were compared in all measures, including demographic measures and degree of mobility. The two groups did not differ except in one measure. At Time 1, the study group had a higher mean of depressive symptoms (BDI) compared with the control group (mean=29.62, SD=10.6 for the study group and mean=21, SD=0.53 for the control group, Mann-Whitney z=-2.64, p≤0.05). No statistically significant differences were found between groups in any of the demographic indices or in the degree of disability.
Within-Group Analysis
Wilcoxon tests were carried out to examine pre-post effects within each group. The means and standard deviations for the outcome measures at both points of time are presented in Table 1.
Table 1
Results of Wilcoxon signed rank test for pre-post effects within each group
(Means and standard deviations are presented for both groups)
Study group (n=8) |
Control group (n=8) |
|||||
variable |
Time 1 |
Time 2 |
Wilcoxon sign test |
Time 1 |
Time 2 |
Wilcoxon sign test |
M (SD) |
M (SD) |
M (SD) |
M (SD) |
|||
SOC |
67.37 (12.9) |
71.40 (14) |
p≤0.05 |
69.25 (11.18) |
71.6 (14.17) |
ns |
BDI |
29.62 (10.6) |
24.0 (4.80) |
p≤0.05 |
21.0 (0.53) |
22.50 (0.76) |
p≤0.05 |
QOL Psychological |
5.40 (1.30) |
6.10 (0.53) |
ns |
5.62 (0.88) |
6.0 (0.97) |
ns |
QOL Physical |
5.34 (1.43) |
6.31 (0.81) |
p≤0.05 |
6.50 (0.53) |
6.84 (0.26) |
ns |
QOL Social |
5.87 (0.92) |
5.96 (1.34) |
ns |
6.18 (1.10) |
6.18 (0.90) |
ns |
QOL Cultural |
5.93 (1.25) |
6.81 (0.37) |
p≤0.05 |
6.84 (0.29) |
6.81 (0.35) |
ns |
*p≤0.05
As can been seen from Table 1, the SOC and the physical and cultural QOL within the participants in the CB group had significantly improved, while that of the participants in the control group hardly changed. Table 1 also shows that both groups had relatively low levels of depression at baseline. Nevertheless, within group comparisons, it is indicated that while the depression level in the CB group had declined (p≤0.05), depression level in the control group had risen (p≤0.05).
Effect size
Another way to determine the effectiveness of the CB group intervention is to examine the effect size for the differences in the changes that had occurred in the two groups with regard to the research variables. Cohen's d effect size was calculated for the changes that occurred in each variable between t1 and t2. Results are presented in Table 2.
|
CBI over control group |
|
|
SOC |
0.75 |
|
BDI |
1.73 |
|
QOL Psychological |
0.96 |
|
QOL Physiological |
1.31 |
|
QOL Social |
0.27 |
|
QOL cultural |
1.36 |
Except for social quality of life where the study group had a small effect size over the control group (d=0.27), in all other measures a large effect size of the study group over the control group was observed (0.75 The aim of the study was to evaluate the impact of a CB group intervention upon the well being of severely disabled adolescents and young adults diagnosed with cerebral palsy, a group which has received very little scholarly attention. The study group (n=8) participated in a cognitive-behavioral (CB) group intervention throughout twelve months, whereas the control-group (n=8) had corresponding peer social meetings.
Several limitations of the study must be noted. The major limitation is related to its small sample size. This limitation impairs the generalizability of the current findings, and has also hampered our ability to examine causal relations between SOC, BDI, and QOL. Further, this study relied on self-reported data, potentially resulting in some bias. With these limitations in mind, we discuss the major findings and implications of the study.
Before and after trial comparison tests showed that the CB group intervention was more effective than the social peer group in decreasing depressive symptoms and in enhancing SOC, physical, and cultural Quality of life. At the end of the year, not only did the peer social group show no improvement in the psychological indices, but the depression level of the participants in this group had risen.
The above findings are in line with prior findings indicating the effectiveness of CB interventions in terms of promoting the well being and decreasing the negative perceptions of people suffering different physical and mental disabilities (Mohr, Hart, & Vella, 2007; Hains et al, 1997; Jahoda, Dagnan, Jarvie, & Kerr, 2006; Redondo et al, 2004). However, a prior study suggested that cognitive therapy is not superior to other psychotherapeutic interventions in alleviating depression (Wampold, Minami, Baskin & Tierney, 2002). Moreover, a recent meta-analysis of eight studies has shown that various interventions could potentially alleviate depression among persons with multiple sclerosis, with CB being just one of them (Walker & Gonzalez, 2007). Our finding, which indicates an increase in the depression level of the participants in the peer social group, is especially interesting. One possible explanation for this finding is that being part of a social network restricted to handicapped people may enhance ones' perceived "abnormal" status.
The current findings also show that the SOC of the participants in the CB group had significantly improved. These finding are consistent with prior research highlighting the positive outcomes of CB interventions with regard to SOC (Berger et al, 2007a; Berger et al, 2007b). Findings by Lustig, Rosenthal Strauser, & Haynes (2000) on handicapped people suggest that SOC is an independent variable which accounts for better adjustment. Individuals characterized by a stronger SOC tend to take an active role in shaping their own health outcomes, thereby improving their quality of life (Eriksson & Lindström, 2007; Fok, Chair, & Lopez, 2005).
It should be pointed out that the QOL of the participants in both groups studied here was relatively high at the first measure. This finding is consistent with Albrecht and Devlieger's (1999) claim disabled persons often report a positive QOL. Support for this claim is derived from Asch's (1988) study of physically dependent persons, indicating that two-thirds of the sample surveyed perceived their lives as very or somewhat satisfying (National Organization on Disability, 1994). Similarly, Patrick & Chiang (2000) stress that many disabled persons, including those using a wheelchair, report having a high QOL.
Although, both groups studied here reported quite similar levels of QOL at t1, a significant improvement in the physical and cultural QOL was found solely among participants in the CB group at t2. It could very well be that the acquisition of cognitive behavioral skills, which enabled participants to modify irrational beliefs regarding themselves and their environment, as well as to regard themselves as more resourceful and independent, has enhanced their perceived physical QOL. This is reflected in participants' report of greater ability to control their physical environment, create comfortable living conditions, and feel physically secure, all of which are defined by Shye (1989) as important components of the physical QOL.
A possible explanation for the importance of the CB intervention for participants' cultural QOL is that it allowed them to better identify their cognitions as well as to adopt novel ways of thinking. Consequently, participants may have become more aware of their own beliefs and values, thereby, enabling them to feel more morally wholesome. This, together with the acquisition of assertive skills, may have encouraged the participants to overtly express their values and moral frame of mind, which Shye (1989) considers an important component of the cultural QOL.
It is unclear why the psychological QOL within the CB group did not improve significantly at t2. One plausible explanation is that although participants experienced an improvement in the physical and cultural domains of their lives, they did not feel more capable of fulfilling their various aspirations and reaching their full potential, due to their severe disability. This, in turn, may explain why their general mood and self image, which are defined by Shye (1989) as additional components of the psychological QOL, had not improved.
The findings indicating that CB group participants' social QOL did not improve may be due to the social constraints and the stigmatization encountered by severely disabled persons (Grytten, 2006). One may logically assume that the participants were well aware of the negative portrayal of severely disabled persons in society, resulting in their belief that their options are limited in terms of establishing friendships and connections within their community.
Contrary to CB group interventions, the chief purposes of peer support groups are to provide its members an opportunity to decrease loneliness (Braithwaite, Waldron & Finn.,1999), develop friendships, and rebuild social networks (Hogan, Linden & Najarian, 2002). The current findings showing that the QOL of the participants in the peer social group did not improve in any field may suggest that resources which merely address one's social needs are not adequate for promoting the QOL of young adults with CP. This explanation gains further support from our finding indicating relatively large differences in the changes that had occurred in the QOL of the two groups. Thus, it could be that a group setting, in which social support and provision of cognitive-behavioral skills are provided simultaneously, is more beneficial for some aspects of QOL of young adults with CP.
To the best of our knowledge the current study marks the first attempt to evaluate a long term CB intervention among severely disabled young adults with CP. Our preliminary findings add to the extant knowledge which suggested CB interventions have a positive effect on both physical and mental health problems of persons suffering from various diseases and disabilities. Additional research, using larger samples of young adults with CP, is necessary to enhance the generalizability of the findings in Israel and cross-national studies would enable us to validate these findings in other countries. Further, follow up studies are needed to determine the long term effects of CB group interventions.
The current study has several implications for practice. First, given the positive effects of CB group intervention, as found here, mental health clinicians working with severely disabled persons with CP should consider integrating CB skills with other types of psychotherapeutic interventions. Second, the findings indicating no improvement in the social QOL within the CB group may suggest that CB interventions, aimed at changes on the individual level, are inadequate to address the social changes required for the social integration of severely disabled persons within the community. A more integrative and community oriented intervention, which takes into consideration both individual and social-cultural aspects, may better address the social obstacles encountered by severely disabled persons. This in turn may increase their social quality of life.
The current findings, if confirmed by additional studies, draw attention to the benefits entailed in a CB group intervention with respect to the SOC and the well being of young adults with CP. These findings may suggest that an effective group intervention for young adults with CP requires the provision of both social support and CB skills. The lower outcomes found in the control group may suggest that the opportunity to develop friendships and to build a social network, in and of itself, is not adequate for the promotion of the well being of young adults with CP.
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Email: orlysa@bgu.ac.il Tel: 972-(0)8-6472336, Fax: 972 (0)8-6472933
Ora Bitan, Beit Hagalgalim, Beer Sheva International Journal of Disability, Community &
Rehabilitation Conclusions
References
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Volume 7, No. 2
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