Development of the benefit finding in multiple sclerosis (MS) caregiving scale: A longitudinal study of relations between benefit finding and adjustment

Benefit finding is a meaning making construct that has been shown to be related to adjustment in people with MS and their carers. This study investigated the dimensions, stability and potency of benefit finding in predicting adjustment over a 12 month interval using a newly developed Benefit Finding in Multiple Sclerosis Scale (BFiMSS). Usable data from 388 persons with MS and 232 carers was obtained from questionnaires completed at Time 1 and 12 months later (Time 2). Factor analysis of the BFiMSS revealed seven psychometrically sound factors: Compassion/Empathy, Spiritual Growth, Mindfulness, Family Relations Growth, Life Style Gains, Personal Growth, New Opportunities. BFiMSS total and factors showed satisfactory internal and retest reliability coefficients, and convergent, criterion and external validity. Results of regression analyses indicated that the Time 1 BFiMSS factors accounted for significant amounts of variance in each of the Time 2 adjustment outcomes (positive states of mind, positive affect, anxiety, depression) after controlling for Time 1 adjustment, and relevant demographic and illness variables. Findings delineate the dimensional structure of benefit finding in MS, the differential links between benefit finding dimensions and adjustment and the temporal unfolding of benefit finding in chronic illness.

The nature of caregiving in children of a parent with multiple sclerosis from multiple sources and the associations between caregiving activities and youth adjustment overtime

This study explored youth caregiving for a parent with multiple sclerosis (MS) from multiple perspectives, and examined associations between caregiving and child negative (behavioural emotional difficulties, somatisation) and positive (life satisfaction, positive affect, prosocial behaviour) adjustment outcomes overtime. A total of 88 families participated; 85 parents with MS, 55 partners and 130 children completed questionnaires at Time 1. Child caregiving was assessed by the Youth Activities of Caregiving Scale (YACS). Child and parent questionnaire data were collected at Time 1 and child data were collected 12 months later (Time 2). Factor analysis of the child and parent YACS data replicated the four factors (instrumental, social-emotional, personal-intimate, domestic-household care), all of which were psychometrically sound. The YACS factors were related to parental illness and caregiving context variables that reflected increased caregiving demands. The Time 1 instrumental and social-emotional care domains were associated with poorer Time 2 adjustment, whereas personal-intimate was related to better adjustment and domestic-household care was unrelated to adjustment. Children and their parents exhibited highest agreement on personal-intimate, instrumental and total caregiving, and least on domestic-household and social-emotional care. Findings delineate the key dimensions of young caregiving in MS and the differential links between caregiving activities and youth adjustment.

Caregiving attachment in mothers with schizophrenia: Child and Youth Mental Health Service, Mater Misericordiae Health Services, South Brisbane, Australia

The assessment of parenting capacity and appropriate provision of services to assist parents with mental illness requires improved understanding of how a mental illness may affect the parent-child relationship. Mothers with mental illness may be defensive when providing self-report accounts of their parenting. Within the framework of attachment theory, this study developed a methodology for investigating the quality and characteristics of caregiving through exploration of the mothers' perceptions and strategies in managing her child at bedtime. Utilising questions derived from caregiving attachment research, five mothers with schizophrenia participated in a semi-structured interview concerning bedtime separation. In addition the mothers completed a modified standardised measure of attachment style, the Parent Bonding Instrument, to provide information regarding how they perceived their parenting style. The mothers demonstrated very poor understanding of their child's bedtime anxiety. They described difficulty being effective with bedtime strategies and attributed it to medication-induced fatigue. The interview data contrasted significantly with the Parent Bonding Instrument data in which the mothers did not identify concerns in themselves as caregivers. This study demonstrated the feasibility of a novel approach to gathering information regarding parenting from mothers with a diagnosis of schizophrenia.

Caregiving experience and its influencing factors : rural versus urban adult-child caregivers caring for parents with dementia in China

Background: It is predicted that China will have the largest number of cases of dementia in the world by 2025 (Ferri et al., 2005). Research has demonstrated that caring for family members with dementia can be a long-term, burdensome activity resulting in physical and emotional distress and impairment (Pinquart & Sorensen, 2003b). The establishment of family caregiver supportive services in China can be considered urgent; and the knowledge of the caregiving experience and related influencing factors is necessary to inform such services. Nevertheless, in the context of rapid demographic and socioeconomic change, the impact of caregiving for rural and urban Chinese adult-child caregivers may be different, and different needs in supportive services may therefore be expected. Objectives: The aims of this research were 1) to examine the potential differences existing in the caregiving experience between rural and urban adult-child caregivers caring for parents with dementia in China; and 2) to examine the potential differences existing in the influencing factors of the caregiving experience for rural as compared with urban adult-child caregivers caring for parents with dementia in China. Based on the literature review and Kramer.s (1997) caregiver adaptation model, six concepts and their relationships of caregiving experience were studied: severity of the care receivers. dementia, caregivers. appraisal of role strain and role gain, negative and positive well-being outcomes, and health related quality of life. Furthermore, four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) were studied respectively. Methods: A cross-sectional, comparative design was used to achieve the aims of the study. A questionnaire, which was designed based on the literature review and on Kramer.s (1997) caregiver adaptation model, was completed by 401 adult-child caregivers caring for their parents with dementia from the mental health outpatient departments in five hospitals in the Yunnan province, P.R. China. Structural equation modelling (SEM) was employed as the main statistical technique for data analyses. Other statistical techniques (e.g., t-tests and Chi-Square tests) were also conducted to compare the demographic characteristics and the measured variables between rural and urban groups. Results: For the first research aim, the results indicated that urban adult-child caregivers in China experienced significantly greater strain and negative well-being outcomes than their rural peers; whereas, the difference on the appraisal of role gain and positive outcomes was nonsignificant between the two groups. The results also indicated that the amounts of severity of care receivers. dementia and caregivers. health related quality of life do not have the same meanings between the two groups. Thus, the levels of these two concepts were not comparable between the rural and urban groups in this study. Moreover, the results also demonstrated that the negative direct effect of gain on negative outcomes in urban caregivers was stronger than that in rural caregivers, suggesting that the urban caregivers tended to use appraisal of role gain to protect themselves from negative well-being outcomes to a greater extent. In addition, the unexplained variance in strain in the urban group was significantly more than that in the rural group, suggesting that there were other unmeasured variables besides the severity of care receivers. dementia which would predict strain in urban caregivers compared with their rural peers. For the second research aim, the results demonstrated that rural adult-child caregivers reported a significantly higher level of filial piety and more social support than their urban counterparts, although the two groups did not significantly differ on the levels of their resilience and personal mastery. Furthermore, although the mediation effects of these four influencing factors on both positive and negative aspects remained constant across rural and urban adult-child caregivers, urban caregivers tended to be more effective in using personal mastery to protect themselves from role strain than rural caregivers, which in turn protects them more from the negative well-being outcomes than was the case with their rural peers. Conclusions: The study extends the application of Kramer.s caregiving adaptation process model (Kramer, 1997) to a sample of adult-child caregivers in China by demonstrating that both positive and negative aspects of caregiving may impact on the caregiver.s health related quality of life, suggesting that both aspects should be targeted in supportive interventions for Chinese family caregivers. Moreover, by demonstrating partial mediation effects, the study provides four influencing factors (i.e., filial piety, social support, resilience, and personal mastery) as specific targets for clinical interventions. Furthermore, the study found evidence that urban adult-child caregivers had more negative but similar positive experience compared to their rural peers, suggesting that the establishment of supportive services for urban caregivers may be more urgent at present stage in China. Additionally, since urban caregivers tended to use appraisal of role gain and personal mastery to protect themselves from negative well-being outcomes than rural caregivers to a greater extend, interventions targeting utility of gain or/and personal mastery to decrease negative outcomes might be more effective in urban caregivers than in rural caregivers. On the other hand, as cultural expectations and expression of filial piety tend to be more traditional in rural areas, interventions targeting filial piety could be more effective among rural caregivers. Last but not least, as rural adult-child caregivers have more existing natural social support than their urban counterparts, mobilising existing natural social support resources may be more beneficial for rural caregivers, whereas, formal supports (e.g., counselling services, support groups and adult day care centres) should be enhanced for urban caregivers.

Avoidance of issues in family caregiving

Effective communication between older people and their family carers is necessary for providing appropriate and quality care. However, family carers and carereceivers may avoid discussing issues of concern and this may adversely affect the quality of the caring relationship. This study investigated the content of, and avoidance of issues in communication between 84 spousal and filial carers and carereceivers. The study findings indicate that family carers and carereceivers do avoid discussing issues of concern. Nurses working with families are well placed to promote more effective communication in the caring context to augment more satisfying caring relationships for both carers and carereceivers.

Shared caregiving responsibilities of adult siblings with elderly parents

This paper uses a nonstructural, ordered discrete choice model to measure the effects of various parent and child characteristics upon the independent caregiving decisions of the adult children of elderly parents sampled in the 1982 and 1984 National Long Term Care Survey (NLTCS). While significant effects are noted, emphasis is placed on test statistics constructed to measure the independence of caregiving decisions. The test statistic results are conclusive: The caregiving decisions of adult children are dependent across time and family members. Structural models taking dependencies among family members into account note effects similar to those in the nonstructural model.

Comparisons between youth of a parent with MS and a control group on adjustment, caregiving, attachment and family functioning

Few studies have examined the effects of parental MS on children, and those that have suffered from numerous methodological weaknesses, some of which are addressed in this study. This study investigated the effects of parental MS on children by comparing youth of a parent with MS to youth who have no family member with a serious health condition on adjustment outcomes, caregiving, attachment and family functioning. A questionnaire survey methodology was used. Measures included youth somatisation, health, pro-social behaviour, behavioural-social difficulties, caregiving, attachment and family functioning. A total of 126 youth of a parent with MS were recruited from MS Societies in Australia and, were matched one-to-one with youth who had no family member with a health condition drawn from a large community sample. Comparisons showed that youth of a parent with MS did not differ on any of the outcomes except for peer relationship problems: adolescent youth of a parent with MS reported lower peer relationship problems than control adolescents. Overall, results did not support prior research findings suggesting adverse impacts of parental MS on youth.

The quality of life and caregiving burden among caregivers of people with dementia in Hanoi, Bac Ninh and Hai Phong, Vietnam

This three phase study aimed to describe dementia carer's quality of life (QoL) and perceived burden, and explore the associations between family carer characteristics, burden and perceived QoL in Vietnam. Dementia carers in the capital, Hanoi, in Phase 1 (N= 153) and from Hanoi, Hai Phong and Bac Ninh in Phase 2 (N=347) completed questionnaires. Survey results showed dementia carers reported low QoL, predicted by high perceived burden. Other carer characteristics including age, gender, family income and perceived experience were significantly associated with QoL. Filial piety contributed to only a single domain of QoL. Phase 3 employed qualitative methods to explore the specific issues faced by daughter carers. Findings suggested that filial gratitude and positive aspects of the role may influence the caring experience of daughter carers. Further investigation of the specific support needs of general dementia carers, and daughter carers in particular, in Vietnam is warranted.

The effects of parental illness and other ill family members on youth caregiving experiences

Informed by a model of family role-redistribution derived from the Family Ecology Framework (Pedersen & Revenson, 2005), this study examined differences in two proposed psychological components of role-redistribution (youth caregiving experiences and responsibilities) between youth of a parent with illness and their peers from ‘healthy’ families controlling for the effects of whether a parent is ill or some other family member, illness type, and demographics. Based on self-report questionnaire data, four groups of Australian children were derived from a community sample of 2474youth (‘healthy’ family, n=1768; parental illness, n=336; other family member illness, n=254; both parental and other family member illness, n=116). The presence of any family member with a serious illness is associated with an intensification of youth caregiving experiences relative to peers from healthy families. This risk is elevated if the ill family member is a parent, if more illnesses are present, and by certain youth and family demographics, and especially by higher caregiving responsibilities. The presence of a family member, particularly a parent, with a serious medical condition has pervasive increased effects on youth caregiving compared to healthy families, and these effects are not fully accounted for by illness type, demographics or caregiving responsibilities.

Caregivers' beliefs about practice in infant child care programmes

Infant caregivers in centre-based child care were videotaped as they interacted with the children during routine and non-routine activities. During a subsequent interview, the video provided a stimulus for discussion and reflection on practices. Caregivers were also asked to write about their beliefs on good practice in caring for infants. Transcripts of the interviews and the written statements were then analysed for evidence of nave and informed beliefs about caregiving. Most caregivers held nave beliefs and only one caregiver had an informed understanding of professional practice with infants. The usefulness of the analytical framework used in this research is discussed as a means for understanding caregiving practices. It has important implications for approaches to initial professional education of early childhood teachers and for professional development programmes.

Measurement and correlates of caregiver self-efficacy amongst family caregivers of persons with dementia living in Shanghai, China

Background: Caring for family members with dementia can be a long-term, burdensome task resulting in physical and emotional distress and impairment. Research has demonstrated significantly lower levels of selfefficacy among family caregivers of people with dementia (CGs) than caregivers of relatives with non-dementia diseases. Intervention studies have also suggested that the mental and physical health of dementia CGs could be improved through the enhancement of their self-efficacy. However, studies are limited in terms of the influences of caregiver self-efficacy on caregiver behaviour, subjective burden and health-related quality of life. Of particular note is that there are no studies on the applicability of caregiver self-efficacy in the social context of China. Objective: The purpose of this thesis was to undertake theoretical exploration using Bandura’s (1997) self-efficacy theory to 1) revise the Revised Caregiving Self-Efficacy Scale (C-RCSES) (Steffen, McKibbin, Zeiss, Gallagher-Thompson, & Bandura, 2002), and 2) explore determinants of caregiver self-efficacy and the role of caregiver self-efficacy and other conceptual constructs (including CGs’ socio-demographic characteristics, CRs’ impairment and CGs’ social support) in explaining and predicting caregiver behaviour, subjective burden and health-related quality of life among CGs in China. Methodology: Two studies were undertaken: a qualitative elicitation study with 10 CGs; and a cross-sectional survey with 196 CGs. In the first study, semi-structured interviews were conducted to explore caregiver behaviours and corresponding challenges for their performance. The findings of the study assisted in the development of the initial items and domains of the Chinese version of the Revised Caregiving Self-Efficacy Scale (C-RCSES). Following changes to items in the scale, the second study, a cross-sectional survey with 196 CGs was conducted to evaluate the psychometric properties of C-RCSES and to test a hypothesised self-efficacy model of family caregiving adapted from Bandura’s theory (1997). Results: 35 items were generated from the qualitative data. The content validity of the C-RCSES was assessed and ensured in Study One before being used for the cross-sectional survey. Eight items were removed and five subscales (caregiver self-efficacy for gathering information about treatment, symptoms and health care; obtaining support; responding to problematic behaviours; management of household, personal and medical care; and controlling upsetting thoughts about caregiving) were identified after principal component factor analysis on the cross-sectional survey data. The reliability of the scale is acceptable: the Cronbach’s alpha coefficients for the whole scale and for each subscale were all over .80; and the fourweek test-retest reliabilities for the whole scale and for each subscale ranged from .64 to .85. The concurrent, convergent and divergent validity were also acceptable. CGs reported moderate levels of caregiver self-efficacy. Furthermore, the level of self-efficacy for management of household, personal and medical care was relatively high in comparison to those of the other four domains of caregiver self-efficacy. Caregiver self-efficacy was also significantly influenced by CGs’ socio-demographic characteristics and the caregiving external factors (CR impairment and social support that CGs obtained). The level of caregiver behaviour that CGs reported was higher than that reported in other Chinese research. CGs’ socio-demographics significantly influenced caregiver behaviour, whereas caregiver self-efficacy did not influence caregiver behaviour. Regarding the two external factors, CGs who cared for highly impaired relatives reported high levels of caregiver behaviour, but social support did not influence caregiver behaviour. Regarding caregiver subjective burden and health-related quality of life, CGs reported moderate levels of subjective burden, and their level of healthrelated quality of life was significantly lower than that of the general population in China. The findings also indicated that CGs’ subjective burden and health-related quality of life were influenced by all major factors in the hypothesised model, including CGs’ socio-demographics, CRs’ impairment, social support that CGs obtained, caregiver self-efficacy and caregiver behaviour. Of these factors, caregiver self-efficacy and social support significantly improved their subjective burden and health-related quality of life; whereas caregiver behaviour and CRs’ impairment were detrimental to CGs, such as increasing subjective burden and worsening health-related quality of life. Conclusion: While requiring further exploration, the qualitative study was the first qualitative research conducted in China to provide an in-depth understanding of CGs’ caregiving experience, including their major caregiver behaviours and the corresponding challenges. Meanwhile, although the C-RCSES needs further psychometric testing, it is a useful tool for assessing caregiver self-efficacy in Chinese populations. Results of the qualitative and quantitative study provide useful information for future studies regarding the explanatory power of caregiver self-efficacy to caregiver behaviour, subjective burden and health-related quality of life. Additionally, integrated with Bandura’s theory, the findings from the quantitative study also suggested a further study exploring the role of outcome expectations in caregiver behaviour, subjective burden and healthrelated quality of life.

Test of a model of the effects of parental illness on youth and family functioning

Objective: Parental illness (PI) may have adverse impacts on youth and family functioning. Research in this area has suffered from the absence of a guiding comprehensive framework. This study tested a conceptual model of the effects of PI on youth and family functioning derived from the Family Ecology Framework (FEF; Pedersen & Revenson, 2005). Method. A total of 85 parents with multiple sclerosis and 127 youth completed questionnaires at Time 1 and 12 months later at Time 2. Results. Structural equation modeling results supported the FEF with regards to physical-illness disability. Specifically, the proposed mediators (role redistribution, stress, and stigma) were implicated in the processes that link parental disability to several domains of youth adjustment. The results suggest that the effects of parental depression (PD) are not mediated through these processes; rather, PD directly affects family functioning, which in turn mediates the effects onto youth adjustment. Family functioning further mediated between PD and youth well-being and behavioral-social difficulties. Conclusions. Although results support the effects of parental-illness disability on youth and family functioning via the proposed mediational mechanisms, the additive effects of PD on youth physical and mental health occur through direct and indirect (via family functioning) pathways, respectively.

Development of self-efficacy questionnaire for Chinese family caregivers

The purpose of this study was to develop a Self-Efficacy Questionnaire for Chinese Family Caregivers. Semi-structured interviews with 10 family caregivers of people with dementia were conducted to explore how Chinese caregivers manage caregiving and what difficulties they face. The findings of the study assisted in the development of the instrument. Five categories of caregiver behaviours were identified from the qualitative data: gathering information about treatment, symptoms, and health care; obtaining support; responding to behaviour disturbances; managing household, personal, and medical care; and managing distress associated with caregiving. The challenges of caregiving were also identified, including deterioration of care recipients, particularly their behaviour disturbances, a shortage of supportive resources, stigmatization of dementia among the general population, as well as increased distress and decreased social activities due to increased care demand. The findings were used to develop the Self-Efficacy Questionnaire for Chinese Family Caregivers, and 35 items comprising five subscales (representing the above five categories of caregiver behaviour) were generated.

Carers' hope, wellbeing and attitudes regarding recovery

Carers are important to the recovery of their relatives with serious mental disorder however, it is unclear whether they are aware of, or endorse recent conceptualisations of recovery. This study compared carers’ and mental health workers’ recovery attitudes, and undertook multivariate predictions of carers’ wellbeing, hopefulness and recovery attitudes. Participants were 82 Australian family members caring for a relative with psychosis. Carers’ average recovery attitudes were less optimistic than for previously surveyed staff. Carers’ recovery attitudes were predicted by perceptions that their relative’s negative symptoms were more severe. Hopefulness and wellbeing was predicted by more positive and less negative caregiving experiences. Hopefulness was also predicted by less frequent contacts with their affected relative, and unexpectedly, by perceptions of more severe psychotic symptoms. Carers’ wellbeing was further predicted by having a partner and having no lifetime history of a mental disorder. Hope and wellbeing are affected by everyday challenges and positive experiences of caregiving.

Factors influencing caregiver : care receiver communication and its impact on the well-being of older care receivers

Examined communication between frail older people and their caregiving spouses (CGSs), and its relation to well-being in older care receivers. 53 community residing spousal dyads completed questionnaires about their well-being, relational satisfaction, and communication patterns. Conversations between the dyads were also videotaped and analyzed. The type of communication used by the CGSs was influenced by their sex, their earlier relationship with their spouse, and their level of well-being. CGSs who used an overly directive communication tone with their spouse were likely to be wives and CGSs who had a high degree of autonomy in their earlier relationship with their spouse. Low levels of life satisfaction and high affect balance in CGSs were associated with CGSs using a more patronizing tone. The well-being of care receivers was also related to their perceptions of their CGSs' communication. Care receivers who perceived their CGSs' communication as patronizing reported low levels of affect balance and high levels of conflict in the relationship. Findings suggest that certain characteristics of CGSs are related to the type of communication they use when conversing with their partner, although the relations are not always as expected.