An Operational Model for a Therapeutic Community

A comparison of peer led and professionally led support groups for caregivers of frail older persons living in the community demonstrates that both types of groups are effective. Findings reveal that it was the opportunity to ventilate pent-up feelings and emotions, the validation of caregiving experiences, the affirmation of coping abilities, the encouragement for continuing to provide care and cope with the situation, the exploration of alternative care-giving arrangments, the mutual support, and the mutual sharing of information about community resources and coping strategies that appeared to be the most helpful therapeutic ingredients of both types of groups. The greater attention to problem solving work and the learning of specific coping skills in the professionally led groups was not reflected in differential outcomes in the two support group conditions.     

Stress, appraisal, coping, and social support as predictors of adaptational outcome among dementia caregivers

A stress and coping model was used to study predictors of individual differences in caregiver adaptation. A total of 54 family caregivers of elderly dementia patients completed interviews and questionnaires assessing the severity of patient impairment and caregiving stressors; caregiver appraisals, coping responses, and social support and activity; and caregiver outcomes, including depression, life satisfaction, and self-rated health. Correlational and regression analyses supported the utility of the stress and coping model. Appraisal, coping responses, and social support and activity were significant predictors of caregiver outcome, even when severity of caregiving stressors was statistically controlled. The importance of a multidimensional approach to assessing caregiver outcomes was supported by regression analyses indicating that each caregiver outcome was predicted by different patterns of stressors, appraisal, coping, and social support and activity. Results are discussed in terms of a stress and coping model of caregiving, and clinical implications for work with caregiving families.     

Psychological characteristics of people with Parkinson's disease who prematurely drop out of professionally led Internet chat support groups.

Researchers of Internet health interventions have begun to address the problems of high attrition rates. Attrition has been a problem for psychosocial interventions for nearly 50 years. It is ubiquitous no matter what the type of intervention or the modality of delivery. Consistent are the repeated findings that demographic characteristics are the most robust variables. We tested the hypothesis that the greater the fear and apprehension experienced in professionally led Internet support groups, the more likely the participants would not complete the 25-week intervention. The sample consisted of 66 people with Parkinson's disease; each participant was assigned to one of six chat groups. To assess psychological states, we used PCAD, a text analysis program analyzing each person's postings during each chat room session. There was a statistically significant difference between those who terminated the group early and those who completed the intervention on the Anxiety-Fear dimension, F=2.35, (6,63), p=0.03. People who dropped out demonstrated higher death and shame anxiety. A number of possible designs for online groups that may reduce premature attrition are discussed.     

Attachment and spousal caregiving

A community sample of 362 married couples participated in a study of attachment and spousal caregiving, which combined qualitative and quantitative components. The qualitative component focused on actual experiences of caregiving, assessed by participants' semi‐structured accounts of a situation involving their role as caregiver for their spouse. Attachment styles and their underlying dimensions (comfort with closeness, anxiety over relationships) were related to the type of support provided, the coping strategies used in the situation, caregivers' feelings about the quality of their care, perceived effects on the couple bond, and the emotional tone of the accounts. The quantitative component tested a theoretical model of factors predicting willingness to provide care for the spouse if he or she should become dependent in later life. Measures of attachment and caregiving styles, attachment to spouse, and anticipated burden provided reliable prediction of willingness to care. The results support the conceptualization of attachment and caregiving as interrelated features of marital bonds, and they have important implications for patterns of family caregiving.     

Race-Related Differences in the Experiences of Family Members of Persons with Mental Illness Participating in the NAMI Family to Family Education Program

Families play an important role in the lives of individuals with mental illness. Coping with the strain of shifting roles and multiple challenges of caregiving can have a huge impact. Limited information exists regarding race-related differences in families’ caregiving experiences, their abilities to cope with the mental illness of a loved one, or their interactions with mental health service systems. This study examined race-related differences in the experiences of adults seeking to participate in the National Alliance on Mental Illness Family-to-Family Education Program due to mental illness of a loved one. Participants were 293 White and 107 African American family members who completed measures of problem- and emotion-focused coping, knowledge about mental illness, subjective illness burden, psychological distress, and family functioning. Multiple regression analyses were used to determine race-related differences. African American caregivers reported higher levels of negative caregiving experiences, less knowledge of mental illness, and higher levels of both problem-solving coping and emotion-focused coping, than White caregivers. Mental health programs serving African American families should consider targeting specific strategies to address caregiving challenges, support their use of existing coping mechanisms and support networks, and increase their knowledge of mental illness.     

Ethnic and Gender Differences in Distress Among Anglo American, African American, Japanese American, and Mexican American Spousal Caregivers of Persons with Dementia

Distress, coping, and social resources were compared in a sample of 202 Japanese-, Anglo-, African-, and Mexican American spousal caregivers of persons with dementia using a Stress-Coping model. Both ethnicity and gender showed differential effects on the outcome and on the moderating variables. Female caregivers in all ethnic groups reported significantly higher levels of psychiatric symptomatology. All 4 ethnic groups reported high rates of psychological distress, with Mexican Americans reporting significantly higher rates of depression than Anglo or African Americans. Ethnicity was related to (1) the kind of caregiving appraisals (spiritual, pessimistic, and lack of support), (2) coping styles (escape-avoidance and seeking social support), and (3) social support. African Americans were more likely to be spiritual appraisers, to have more positive appraisals, and to have more social support available to them. Gender differences were evident on 4 out of the 6 caregiver appraisals, but none of the coping styles. Although males tended to have more perfectionistic appraisals, they were also more likely to view caregiving with a less negative and more self-efficacious outlook.     

“The Bigger the Network the Bigger the Bowl of Cherries...”: Exploring the Acceptability of,and Preferences for,an Ongoing Support Network for Known BRCA 1 and BRCA 2 Mutation Carriers

There is increasing evidence to suggest that the ongoing information and support needs of BRCA gene mutation carriers are not being met. This qualitative study investigated preferences for an on-going support network for mutation carriers in Wales, UK. Seventeen female BRCA1/2 mutation carriers participated in focus groups which explored their current and on-going information and psychological support needs. The interviews were transcribed and thematically analysed. The results reflected a diversity of experiences and support needs. The majority of participants felt they and their families would benefit from an on-going ‘support network’ which should incorporate information-provision alongside elements of a traditional support group alongside, internet-based support such as web-based chat forums, matching schemes and professionally led workshops. Some degree of professional input into any such initiative was believed to be important. This study has informed the development of an appropriate support network based on a hub and spoke model to help carriers and their families adapt to living and coping with their genetic risk.     

Change in depressive symptoms among daughter caregivers: an 18-month longitudinal study.

This longitudinal study investigates, over an 18-month period, the caregiving experience of a probability sample of 115 daughters who provided care to an aging parent. The levels of depressive symptoms manifested by these daughters were relatively low, with only 23.5% scoring in the clinical range during the study. Nevertheless, there was substantive change in depressive symptoms among the daughters during the 18 months. Daughters with higher levels of mastery were more likely to use problem-focused coping strategies, which led to reductions in depression, whereas daughters with lower levels of mastery were more likely to use emotion-focused coping, which led to increased levels of depression. Mastery was higher when the caregiving role was shared with a sibling: it was lower if the daughter had other caregiving responsibilities and if the parent care recipient had elevated levels of behavior problems.     

Caregiving styles and anxiety among couples: coping versus not coping with cardiac illness

Background and Objectives: partners’ caregiving efforts are not always beneficial to both recipient and provider. Bowlby’s conceptualization of caregiving style as a stable predisposition may clarify such caregiving effects. The relationship between caregiving style (compulsive and sensitive) and anxiety among couples coping with cardiac illness and a matching control group not coping with cardiac illness were assessed. We hypothesized that one’s compulsive caregiving would associate positively, and one’s sensitive caregiving would associate negatively, with one’s and one’s partner’s anxiety across contexts (cardiac and non-cardiac) and gender. Design: A comparative design of 131 couples with a diagnosis of husbands’ acute cardiac syndrome and 68 matched couples in the community was applied. Methods: The Adult Caregiving Questionnaire and the Brief Symptoms Inventory were administered. Results: Structural equation modeling revealed that one’s compulsive caregiving was positively associated with one’s anxiety, across most contexts. Multi-group analyses revealed that the associations between one’s compulsive caregiving and one’s partner’s anxiety levels differed depending on gender and context. Conclusions: The distress which emerges in an individual who takes on a caregiving role and in his/her partner seems to result not only from the demands of the concrete caregiving situation but also from one’s and one’s partner’s developmental history.     

The Borderline Schizophrenic in Group Psychotherapy

SAGE is a group program developed for the community elderly. Groups led by professionals were compared to those led by the elderly, who were supervised SAGE graduates, and both of these groups of participants were compared to a wait-control group of elderly. A series of pre- and postmeasures on goal attainment scales and physical and mental health indices were used to evaluate the impact of the SAGE program. Professionally led groups had greater impact on improvement of mental health indices compared to the peer-led groups. These findings are discussed in the context of a framework used to analyze the differences between professionally conducted therapy, paraprofessionals, and peer-led self-help groups. Implications for the role of professionals in self-help are examined.     

Mental health professionals' support of self‐help groups

Objective. Self‐help groups and other consumer‐led services are viewed as valuable additions to mental health services. This study describes professional support for self‐help groups and examines the hypothesis that professional support of self‐help is influenced by the degree to which professionally‐led groups are viewed as more helpful than self‐help groups. Method. Survey data were obtained from a representative sample of over 900 mental health professionals employed in mental health agencies in a large US State. The survey assessed beliefs, behaviours, attitudes, and intentions toward professional and self‐help groups. Results. Respondents who perceive professionally‐led groups to be significantly more helpful than self‐help groups were less inclined to support self‐help groups through referrals, help in organizing groups, or financially. Conclusion. To the extent that professional support of the self‐help movement is diminished, valuable allies in the struggle to expand the reach of mental health services are lost. It is proposed that mental health professionals should obtain additional information about the benefits of self‐help and the constructive role that self‐help groups can play in expanding the availability and continuum of beneficial mental health services. Copyright © 2001 John Wiley & Sons, Ltd.     

Correlates of social support receipt

Psychological correlates of social support receipt were examined in an investigation of stress and coping among 150 middle-aged community residents. Subjects were interviewed monthly for 6 months, each time concerning a specific stressful situation in the previous month. Social support received and methods of coping were assessed each time, as well as other variables. Factors hypothesized to be associated with support receipt were person predispositions, appraisal patterns with regard to specific stressful encounters, and coping strategies used. Each was most strongly associated with a particular type of social support. Person predispositions related most strongly to emotional support received, appraisal factors related most strongly to aid, and coping strategies related most to informational support received. Furthermore, of the three sets of variables, the individual's ways of coping appeared to be most strongly associated with all types of social support received. Two implications are explored. First, we suggest that the three types of social support studied represent different constructs with different antecedents and consequences. Second, we argue that coping behavior provides interpersonal cues regarding what is wanted or needed in a stressful situation and that the members of the social environment respond accordingly.     

Impact of Maternal Support and Involvement on Coping in Adolescent Males of Color

The current study examined maternal support and maternal involvement as moderators of the association between exposure to community violence (ECV) and both violence-related and non-violence related stressors in adolescent males of color. The current study included 250 African American (61%) and Latino (39%) male adolescents from the Chicago Youth Development Study to examine the cross-sectional and longitudinal associations between community violence exposure, maternal support and involvement, and youth coping strategies. Neither maternal support nor maternal involvement were moderators of the association between ECV and coping, cross-sectionally or longitudinally. However, higher levels of both maternal support and involvement predicted lower levels of maladaptive coping with non-violence related stressors both cross-sectionally and longitudinally. Maternal support and involvement were unrelated to coping with violence-related stressors. It was expected that these parenting variables would show a protective effect on the relationship with violence exposure and coping, but the results suggest that these parenting attributes have direct ameliorative effect on coping with non-violence-related stressors. However, this finding did not extend to coping with violence-related stressors, underscoring the traumatic nature of violence exposure and importance of specificity frameworks for conducting research on the impact of violence exposure.     

Resources for resilient caregiving by parents of children with schizophrenia in Swaziland: A multiple case study

This study reports on the care-provisioning experiences of parents (n = 6; females = 5) raising children with schizophrenia in a rural Swazi setting. The parents were individually interviewed at their homes on caregiving aspects such as burden, coping, quality of life, expressed emotions and social support of their child with schizophrenia. Data were thematically analysed. Parent carers of children with schizophrenia reported to have personal resources for resilient caregiving such as motivation for caring, and caregiving satisfaction. They perceived compassion gains from improved quality of life for their children through the caregiving experiences. Findings suggest a need for public mental health education and provision of welfare support of parents’ personal resources for resilient caregiving.     

A safe haven: an attachment theory perspective on support seeking and caregiving in intimate relationships

This study used an attachment theoretical framework to investigate support-seeking and caregiving processes in intimate relationships. Dating couples (N = 93) were videotaped while one member of the couple (support seeker) disclosed a personal problem to his or her partner (caregiver). Results indicated that when support seekers rated their problem as more stressful, they engaged in more direct support-seeking behavior, which led their partners to respond with more helpful forms of caregiving. Responsive caregiving then led seekers to feel cared for and to experience improved mood. Evidence for individual differences was also obtained: Avoidant attachment predicted ineffective support seeking, and anxious attachment predicted poor caregiving. Finally, couples in better functioning relationships engaged in more supportive interactions, and participants' perceptions of their interaction were biased by relationship quality and attachment style.     

Association between leisure time physical activity and stress,social support and coping: A cluster-analytical approach

ObjectivesIdentifying risk clusters of stress, anxiety and depression, taking into consideration social support and coping, two important factors through which leisure time physical activity may have stress-reducing effects, may lead to more effective exercise treatment strategies for stress. The aim of this study was to investigate whether stress, social support and coping cluster in meaningful ways in the general adult population, and whether individuals of these clusters also differ in anxiety, depression and different types of leisure time physical activity.DesignCross-sectional study in a randomly chosen community based sample of adults in the Flemish region of Belgium.MethodA sample of 2616 Flemish adults, aged 18–75, completed two self-report computerized questionnaires on mental health, physical activity and demographic characteristics in the presence of a scientific staff member.ResultsThree reliable clusters were identified in both males and females. The first cluster showed high levels of stress and ineffective coping and low levels of social support. The second one showed the opposite, and the third one an intermediate profile. Anxiety and depression were highest in persons of the stressed cluster and diminished gradually over the intermediate and the nonstressed ones. Sports participation and not other types of leisure time physical activity was significantly lower in the stressed cluster.ConclusionsBy means of cluster analysis, risk groups of stress, anxiety and depression in adult males and females can be identified. Sports participation may have a beneficial effect in these at-risk groups.     

Family caregiving to dependent older adults: stress, appraisal, and coping

Articles presented in this 1987 APA symposium adopt a stress, appraisal, and coping framework for conceptualizing the experience of family caregiving. Each article emphasizes 2 themes: (a) caregivers' adaptation to the chronic demands of in-home caregiving and (b) factors that mediate the relationship between caregiving stress and caregiver's adaptation. The articles presented in this symposium illustrate both the utility of this theoretical approach to studying caregiving stress and the difficulty inherent in its use.     

Caregiving Burden and Parent–Child Quality of Life Outcomes in Neurodevelopmental Conditions: The Mediating Role of Behavioral Disengagement

The aim of this study was to analyze the direct and indirect effects, via parents’ behavioral disengagement coping, of caregiving burden on the quality of life (QL) of parents and their children with neurodevelopmental conditions. Self-completion questionnaires on the target variables were administered to a sample of 156 parents who had a child with a neurodevelopmental condition, namely epilepsy (n = 65) and cerebral palsy (n = 91). Structural equation modeling was used to test a mediation model and ascertain direct and indirect effects among study variables. Significant direct effects of caregiving burden on parents’ and their children’s QL were found. Additionally, caregiving burden had a significant indirect effect on parents’ QL, via behavioral disengagement, but not on their children’s QL. Finally, this model was found to be invariant across conditions and patients’ age groups. Caregiving burden may be elected as a strategic intervention target to improve parent–child QL outcomes in neuropediatric settings. Parents should be encouraged to avoid or reduce behavioral disengagement coping in relation to their caregiving stress, and alternatively adopt active coping strategies that may positively affect their children’s QL and impede or attenuate the deleterious effects of caregiving burden on their own QL.     

The Structure of Coping in AIDS Caregivers: A Factor Analytically Derived Measure1

We report on the development of a new coping inventory. Findings demonstrate factorial invariance for 3 factors across 3 groups of caregivers. From a 19‐item summative inventory, we derived a 3‐factor model including direct problem management. positive outlook, and reality‐based coping. The model, inclusive of 9 items. appears to have consistent factor structure across groups. Results offer evidence that the 3‐factor structure is robust and may be generalized across other groups of caregivers. The model provides an acceptable fit with coping concepts of direct problem management, cognitive, and perceptual management of meaning. Findings suggest that caregivers are similar in these 3 dimensions of coping; that domain‐specific caregiving experiences are responsible for selection of coping efforts comprising these coping dimensions.     

Development of a Measure of Coping with Multiple Sclerosis Caregiving

Development of a self-report measure of coping specific to multiple sclerosis (MS) caregiving is needed to advance our understanding of the role of coping in adaptation to caring for a person with MS and to contribute to a lack of empirical data on MS caregiving. A total of 213 MS caregivers and their care recipients completed a Coping with MS Caregiving Inventory (CMSCI) and measures of adjustment (psychological distress), appraisal and illness. A subsample ( n = 64) also completed the Ways of Coping Checklist (WCC) and additional adjustment measures (depression, caregiving impact, dyadic adjustment, and relationship conflict and reciprocity). Factor analyses revealed 5 factors: Supportive Engagement, Criticism and Coercion, Practical Assistance, Avoidance, and Positive Reframing. Subscales had internal reliabilities comparable to similar scales and were empirically distinct. Preliminary construct validation data are consistent with recent MS caregiving research that links passive avoidant emotion-focused coping with poorer adjustment, and relationship-focused coping caregiving research that links greater reliance on positive relationship-focused coping and less reliance on criticism with better adjustment. Results extend this research by revealing new relations between coping and adaptation to MS caregiving. Convergent validation data suggest that although the inventory differs from the WCC, it does share certain conceptual similarities with this scale.