East Asian Arch Psychiatry 2011;21:64-72

ORIGINAL ARTICLE

The Development of a Strength-focused Mutual Support Group for Caretakers of Children with Cerebral Palsy
大脑痲痹儿童照顾者力量聚焦互助小组的发展
BKK Fung, SMY Ho, ASM Fung, EYP Leung, SP Chow, WY Ip, KWY Ha, PIG Barlaan
冯国强、何敏贤、冯淑敏、梁婉萍、周肇平、叶永玉、夏惠仪、PIG Barlaan

Dr Boris KK Fung, FHKAM (Orthopaedic Surgery), Department of Orthopaedics and Traumatology, Queen Mary Hospital, Hong Kong SAR, China.
Dr Samuel MY Ho, MSocSc (ClinPsy), PhD, Department of Psychology, The University of Hong Kong, Hong Kong SAR, China.
Dr Amy SM Fung, MSocSc (ClinPsy), PhD, Department of Clinical Psychology, Queen Mary Hospital, Hong Kong SAR, China.
Ms Eva Yuen-Ping Leung, MSocSc (ClinPsy), PhD, Department of Psychology, The University of Hong Kong, Hong Kong SAR, China.
Prof Shew-ping Chow, FHKAM (Orthopaedic Surgery), Department of Orthopaedics and Traumatology, The University of Hong Kong, Queen Mary Hospital, Hong Kong SAR, China.
Dr Wing-Yuk Ip, FHKAM (Orthopaedic Surgery), Department of Orthopaedics and Traumatology, Queen Mary Hospital, Hong Kong SAR, China.
Ms Kennis WY Ha, MSc (OT), ROT (HK), Department of Occupational Therapy, Duchess of Kent Children’s Hospital, Hong Kong SAR, China.
Dr Philip Ian G. Barlaan, MD, FPOA (Philippines), Department of Orthopaedics and Traumatology, Queen Mary Hospital, Hong Kong SAR, China.

Address for correspondence: Dr Boris KK Fung, Department of Orthopaedics and Traumatology, Queen Mary Hospital, Pokfulam, Hong Kong SAR, China.
Tel: (852) 7306 9722; Fax: (852) 2817 4392; Email: bkkfung@hkucc.hku.hk

Submitted: 9 November 2010; Accepted: 31 January 2011


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Abstract

Objective: To examine the efficacy of a strength-focused mutual support group for reducing stress and enhancing psychological well-being of the caretakers of children with cerebral palsy.

Methods: This pre- and post-intervention outcome study, conducted by Department of Orthopaedics and Traumatology, Duchess of Kent Children’s Hospital, recruited 12 primary caretakers of children with cerebral palsy in Hong Kong. A strength-focused support group manual was developed to help such caretakers to identify and cultivate the character strengths of their children and enhance their own positive emotions. Participants were asked to complete a full set of questionnaires at 3 time-points: before and immediately after the intervention (consisting of 4 weekly sessions), and after the 1-month follow-up booster session. Two additional questionnaires were administered before each session to check mood. Parenting stress, anxiety, depression, social support, hope, and other psychological well-being measures were also assessed.

Results: Half of the caretakers (n = 6) who had attended the full intervention programme were included in the data analysis. Participants exhibited a significantly lower level of parental stress and higher hope level both after the 4 intervention sessions and at the booster session. Their perceived social support was significantly increased when the group was ongoing but not after it ended.

Conclusion: This group intervention programme could effectively help caretakers reduce their parenting stress and enhance their hopefulness. Launching a similar programme with more sessions and regular follow-up sessions might help maintain positive effects and establish a social support network.

Key words: Caregivers; Cerebral palsy; Psychological tests; Self-help groups

摘要

目的:检视一个力量聚焦互助小组在帮助大脑痲痹儿童照顾者减低压力和增强心理健康的效果。

方法:这项由香港根德公爵夫人儿童医院骨科及矫形创伤部进行的干预前後结果研究,纳入12名大脑痲痹儿童的主要照顾者。这些照顾者透过力量聚焦互助小组指引,确认和开发他们孩子的性格强项,从而提升他们的自我正面情感。小组共分4节(每星期1节),参与者须於第1节开始前、第4节完成後和在紧接的推进小组後共叁个阶段完成问卷调查,并於每节开始前填写另外两份问卷作情绪评估。研究也透过各项工具评估照顾者的亲职压力、忧虑度、抑鬱状态社会支持水平、希望水平和其他心理健康质素。

结果:研究共收集6名完成整个干预计划的照顾者资料数据进行分析。在参与4节课堂和推进小组後,他们的亲职压力明显减低,希望水平也显著提高。在未完成干预计划前,参与者的认知社会支持水平也明显提高。

结论:这个小组干预计划有效帮助照顾者减低亲职压力和提升他们的希望水平。发展类似计划并增加小组课堂和定期跟进小组节数,或能维持照顾者的正面情感和有助建立社会支持网络。

关键词:照顾者、大脑痲痹、心理测验、自助小组

Introduction

Many children with cerebral palsy (CP) experience various functional limitations including motor dysfunction, intellectual impairment, and problems in self-care management.1 A recent western study indicated that about 40% of parents with a CP child perceived that their child had moderate or severe problems in terms of emotional, behavioural and social relationship.2 As they faced a great challenge managing their child, most experienced higher levels of parental distress than those of children without special needs. Many research studies reported that mothers of CP children endured a significantly worse quality of life, more distress, and emotional problems than those of healthy children.3,4 Nevertheless, little support was available for this group of mothers in Hong Kong and in other parts of the world. Traditional stress management programmes are generally long (8-12 sessions), which may not be suitable for CP caretakers who need to spend a lot of time taking care of their children. This study was our first attempt to fill this gap, by creating a focused and short (4 sessions) psychological support programme for caretakers of CP children.

Existing literature suggested that the overt severity of the disability and functional impairment were not significant predictors of maternal distress.5 Instead, perceived social support and self-perception significantly predicted the psychological well-being of the parents.1,4 Parents with a higher sense of self-mastery and more inner psychological resources were reported to adapt better to their parental role.6-8 The emerging field of positive psychology draws attention to people’s happiness and psychological well- being. Positive emotion builds enduring personal resources and counteracts negative emotion, and could also buffer very distressed people from psychopathology.9,10 Furthermore, engaging human strengths play an important role in promoting health, happiness and optimal functioning11-13 and help in attaining relief from suffering.14

According to the Transactional Stress and Coping Model,15 both the child and the family need to adapt to the child’s chronic illness. Furthermore, there was a reciprocal relationship between maternal adaptation and child adaptation. Identifying and cultivating CP children’s character strengths is expected to enhance their personal resources and positive emotions, which in turn increases their parents’ sense of control and competence in coping with their children’s problems. A higher coping ability lowers perceived levels of stress. The objective of this study was to develop a strength-focused mutual support group for caretakers of CP children in Hong Kong, with the aim of reducing parenting stress and enhancing psychological well-being. We hypothesised that participants would exhibit a lower level of parental stress and more positive psychological well-being after the intervention to help them identify and cultivate the character strengths of their children.

Methods

Participants and Procedures

Targeted participants of this study were the primary caretakers of CP patients attending clinic follow-ups at the Department of Orthopaedics and Traumatology, the Duchess of Kent Children’s Hospital, Hong Kong. The primary caretaker was defined as the person who was most responsible for the daily care and decision-making for the child. Other inclusion criteria were that: (1) he / she did not have a known psychiatric disease; and (2) their CP child was aged less than 21 years and had not suffered any psychiatric illness other than intellectual impairment.

The initial recruitment was started from 4 December 2007 by mailing invitation letters to all potential participants inviting them to participate through the hospital system. A total of 36 invitations were mailed to the parents and follow- up phone calls were made after 1 week. Four potential participants were not successfully contacted due to change of address / contact information. Finally, 12 (38%) of the caretakers indicated interest to participate in the study.

The parent support group was launched in a semi- structured format, each session lasted 90 minutes. Two groups (6 subjects in each) were run in order to cater to the availability of the caretakers. A total of 4 consecutive weekly sessions were held. One booster session combining the 2 groups was held 1 month after the fourth session. The group was mainly led by a Masters student in clinical psychology, under the supervision of 2 experienced clinical psychologists.

Participants were asked to complete a full assessment package at 3 time-points: pre-intervention (before the commencement of the first session; Time 1); immediately post-intervention (after the fourth intervention session; Time 2); and at the 1-month follow-up booster session (immediately after the booster session; Time 3). To check mood, 2 questionnaires, Parenting Stress Index – Short Form (PSI-SF) and the Chinese Satisfaction with Life Scale (CSWLS) were administered before each session.

The Strength-focused Support Group for Caretakers

The objective of this intervention was to help caretakers to identify positive resources and key strengths of their child, as well as to coach them to develop their child’s identified key strengths. Caretakers were also guided to identify their own character strengths and enhance their positive emotions, for which handouts, experiential exercises, videos and questionnaires were used.

The main theme of session 1 was to introduce the programme, set the ground rules, and build up the relationship with the caretakers. In addition, the caretakers were guided to identify their own strengths by completion of Brief Strengths Test.16 In session 2, character strengths were introduced. The child’s strengths were identified based upon the Brief Values-in-Action Strength Survey for Children.17 A take-home exercise ‘Count one day’s blessing’ was delivered to the participants before the end of the session. In session 3, participants were guided to explore activities and strategies to cultivate their child’s key strengths in daily lives.18 A take-home exercise ‘Gratitude visit’ was delivered. In session 4, participants identified current parenting problems and set concrete plans about how to make use of the child’s strengths to resolve these problems. In the booster session, participants were provided an opportunity to share their experience about developing the child’s key strengths.

Measures

The following battery of inventories was included in the full set of questionnaires. Information regarding the child’s limb functioning levels and the type of disabilities were obtained from the hospital record.

Appraisal of Severity of Disability

Each participant was asked to rate their own perception of their child’s disability from 1 (not severe) to 4 (very severe), as well as the degree of parental overprotection from 1 (no overprotection) to 4 (much overprotection). These questions were used in a previous study19 in Hong Kong with satisfactory results.

Parenting Stress

The PSI-SF is a brief measure of the PSI20 consisting of 3 factors: parental distress, parent-child dysfunctional interaction, and difficult child problems. There are 12 items in each subscale scored by a 5-point Likert scale, ranging from ‘strongly disagree’ to ‘strongly agree’. Subscale scores are added together to achieve the total parenting stress score. The Cronbach’s values of the PSI-SF and those of the subscales were about 0.9.

Social Support

The Multidimensional Scale of Perceived Social Support (MSPSS)21 is a 12-item self-report questionnaire with subscales for family, friends, and significant others. The Chinese version of the MSPSS was validated by Chou’s study22 in which Cronbach’s alpha was 0.9.

Social Avoidance and Distress

The Social Avoidance and Distress Scale is a 28-item true / false questionnaire to measure each participant’s tendency to avoid social situations, as well as their perceived distress level in social situations. The Chinese version was developed by Yu et al23 and has been used in another study in Hong Kong.24 In the present study, the Cronbach’s alpha was 0.9.

Psychological Distress

The Hospital Anxiety and Depression Scale (HADS) contains 14 items rated on a 4-point Likert scale. The Chinese version of the HADS has been well validated in a Chinese population in Hong Kong.25 The Cronbach’s alpha for anxiety was 0.8 and that for depression it was 0.9.

Satisfaction with Life

The 5-item CSWLS26 measures general life satisfaction and one’s judgement about one’s own quality of life. Each item used a 7-point Likert scale ranging from 1 (very strongly disagree) to 7 (very strongly agree), and had a Cronbach’s alpha of 0.8.

Subjective Happiness

The Subjective Happiness Scale was refined to a 4-item version using a 7-point Likert scale.27 Higher scores represent greater levels of subjective happiness. In the present study, the Cronbach’s alpha was 0.9.

Self-esteem

The Rosenberg Self-Esteem Scale (RSES) was designed to measure each participant’s sense of self-worth.28 The RSES consists of 10 items and a 4-point scale was used. The Cronbach’s alpha for self-esteem was 0.8.

Hope

The Hope Scale is a 12-item Likert scale designed to measure the level of hopefulness with 2 subscales, Agency and Pathways.29 In the current study, the alpha for the combined Hope Scale was 0.7, and those for the Agency and Pathways subscales were 0.5 and 0.9, respectively. Because of the low reliability alpha of the Agency subscale, in this study only the combined Hope Scale score was used.

The PSI-SF and CSWLS were administered before each session to check mood. Other questionnaires were administered at different time-points. A demographic questionnaire containing 14 questions was administered once before the first session.

Statistical Analyses

Because of the small number of participants, non- parametric tests were used for quantitative analysis. Mann- Whitney U and Fisher’s exact tests were used to compare the demographic and psychological variables of the 2 independent groups. The Wilcoxon matched-pairs signed rank tests were conducted to compare the differences between different time-points (i.e. Time 1, 2, and 3). The Friedman rank test was also used to compare the data collected across sessions. Correlations for pre-intervention and immediately post-intervention variables were computed using Kendall’s tau-b test. All tests reported were 2-tailed and the significance level was 0.05.

The following statistical analyses of results were performed: (1) description of demographic variables; (2) correlations of the different variables; (3) comparison of variables with different time-points; and (4) comparison of variables across sessions.

Results

Participants

A total of 12 participants were originally enrolled in the intervention group. Of these, 6 (50%) attended the full intervention programme (i.e. all 4 sessions). The other 6 participants were absent in at least 1 session: 1 attended 3 sessions, 3 attended 2, and the other 2 were present at 1 only. Reasons for attrition included feeling sick after a long travelling time, child was discharged from hospital, and being occupied by other personal matters. Only 6 participants who had attended all sessions were included in the subsequent analyses. The demographic information of the participants and drop-out caretakers are summarised in Table 1.

Comparing the demographics of participants who had attended all 4 sessions and the drop-out caretakers by Mann- Whitney U or Fisher’s exact tests, no statistically significant differences were found. For psychological variables, the Mann-Whitney U test also showed that the 2 groups had no differences in terms of parental stress (z = 0.6), anxiety (z = 0.4), depression (z = 0.9), satisfaction with life (z = 0.3), and subjective happiness (z = 0.1) levels.

Correlation

Kendall’s tau-b tests were conducted to measure the strength of association of different psychological variables at Time 1 and Time 2 (Table 2). Parenting stress correlated positively with social avoidance at both Time 1 and Time 2 (Kendall’s tau-b = 0.7; p = 0.04). The association between parenting stress and subjective happiness was negatively correlated at Time 1 (Kendall’s tau-b = 0.7; p = 0.04) and at a marginally significant level at Time 2 (Kendall’s tau-b = 0.7; p = 0.06). Hope was positively correlated with social support at Time 1 and Time 2 (Kendall’s tau-b = 0.7; p = 0.04).

Comparison between Time 1 and Time 2

The differences in psychological variables between Time 1 and Time 2 were computed by the Wilcoxon signed rank tests. Parenting stress, depression, social support, and hope had improved significantly at Time 2 (Table 3).

Comparison between Time 1 and Time 3

Further comparison of scores between Time 1 and Time 3 were conducted to examine whether the changes were maintained after 1 month. The scores for parenting stress and hope remained significantly improved as compared with Time 1, whereas improvements in depression and social support were not sustained (Table 4).

Session-by-session Changes

Parenting Stress

The parenting stress scores measured in different sessions were also analysed. Although there was a significant decrease in parenting stress at different time-points (i.e. Time 1, 2, and 3), the session-by- session changes did not differ significantly, suggesting a gradual decrease in parental stress from session 1 to session 4. However, an increasing trend of parenting stress was shown after the booster session, but this was not statistically significant.

Satisfaction with Life

Similarly, the level of life satisfaction of the caretakers tended to increase from Time 1 to Time 3, although the session-by-session increments were not statistically significant.

Discussion

Parenting Stress

The results of this study showed that caretakers’ parenting stress level decreased significantly immediately post- intervention and after the booster session. By cultivating the strengths of those under their care, caretakers appear to gain more confidence to play their parental roles and increase their sense of mastery over their child’s problems. Lower parenting stress may reflect the caretakers’ higher perceived coping ability to meet child-related challenges.30

When caretakers are encouraged to practise positive parenting and develop their children’s strengths, they experienced more positive emotions, which in turn facilitated better adaptation to their children’s conditions.15 Lower caretaker parental stress may also attributable to more positive attitudes towards their children and help them find positive meaning from parenting.31,32

Despite the significant decrease in the level of depression after the 4 intervention sessions, there was an increasing trend at the booster session. This might suggest that 4 sessions were insufficient for caretakers to learn and practise their newly acquired skills. Arguably, increasing the number of sessions might help participants consolidate and sustain such learned skills in different situations. However, many caretakers (50%) were unable to attend all 4 sessions of our intervention support group. Perhaps longer sessions might be more beneficial, but were restricted by practical limitations. Further study is required to find out the optimal number of sessions to generate the best effect. We believe that the present 4 sessions was a reasonable balance, after due consideration of the pros and cons of more or fewer sessions.

Psychological Well-being

Our results indicated that caretakers’ hope levels increased immediately post-intervention and at the booster session. Increased hope levels suggest that caretakers feel more realistic about pursuing goals and meeting them with respect to themselves and their children.29 Although the caretakers may not yet have practised their learnt skills much, they had become aware of an effective way to develop their child. Conceivably, this increased their hope to play a better role in parenting. Increased hope levels can also better equip them to face their challenges.33,34 Our results also indicated that hope is strongly associated with social support. Perceived social support had increased significantly immediately post- intervention but not at the booster session. This may be because social connections outside the session times were not purposefully promoted (to minimise confounding). Future interventions could consider promoting social support resources outside those of the intervention.

Consistent with previous literature, our results indicated that participants in the support group experienced lowered child-related stress and feelings of social isolation after completing the intervention.35 Apart from the benefits of greater cost-effectiveness,36,37 group interventions can provide a social environment for participants to share similar experiences with others, which can enhance universality and intimacy.38 Social and professional support could reduce caretaker distress from parenting and provide useful information.4,7,8

Our study demonstrated that hope and social support were negatively associated with parental distress.8 In this study, satisfaction with life and subjective happiness increased but not significantly. Plausible explanations include: the group programme had yet to make a significant contribution to subjective well-being, or that its level was steady in nature. Supporters of a set-point model advocated that there might be genetically determined happiness set points. Although people experience significant life events, their happiness levels move around these set points and remain stable over long periods of time.39-41 Future studies can consider using other measures for rating positive emotions.

Implications

After the intervention programme, caretakers reported lower parenting stress and higher levels of hope. Perceived social support was also strengthened during the intervention period. This implies that strength-focused interventions might become a viable alternative and / or a complementary approach to traditional stress management models for caretakers of children with CP. Mental health workers could play a supportive role to help caretakers identify and cultivate their strengths and enhance positive emotions. Group format programmes can lower the cost of providing interventions and offer caretakers more social support.

Last but not least, substantial literature provides strong evidence that parents, particularly mothers of children with CP, are vulnerable to psychological problems, underscoring the need to provide earlier and / or other preventive interventions. We believe that enhancing psychological resources and the coping abilities of these caretakers at the earliest possible stage can effectively reduce the distress and frustration arising from their parenting burdens.

Limitations and Recommendations

The major limitation of our study was the absence of a control group. We therefore cannot rule out the possibility that participants would have undergone the same level of changes even without the intervention. Sampling bias is one of our concerns, because only half of the groups initially enrolled were included in the study. However, no significant difference in demographic and psychological variables between 2 groups was noted, suggesting that other non-specific factors may have caused the high attrition rate. The potential relationships between the demographic data and the outcome parameters cannot be fully examined in this study due to the small sample size, which also reduced our ability to generalise the findings of this study. However, for the small population of CP children in Hong Kong, the results of this pilot study can be considered a valuable prelude to future studies. Further research can focus on examining the long-term effects of this form of intervention and the unique contributions of its positive components.

Conclusion

The current research represents an important step in addressing the psychological needs of caretakers of CP children. In this pilot study, the strength-focused parent support programme was shown to effectively help caretakers reduce their parenting stress, and enhance their sense of hope. Caretakers perceived more social support during the period of the intervention. At the booster stage (1 month after the interventions), there was a non-significant rebound in parenting stress and decline in hope levels, suggesting that additional intervention sessions might contribute to a more sustained long-term effect.

Acknowledgement

We gratefully acknowledge the help from the staff of Duchess of Kent Children’s Hospital. We would also like to extend our sincere gratitude to Ms Tina Tsoi, Ms Winnie Li, Ms Stella Lee and Ms Helen Yim who have all contributed to the completion of this study.

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