The influence of perception of forgetting and gender, ethnicity, and closeness on likelihood of caregiving

As life expectancy increases, the population of older adults is increasing rapidly. The caregiving of older parents by adult children has become a normative experience. Much of the gerontological literature has examined the caregiving experience, particularly in terms of the stresses involved. However, research is only beginning to examine the factors which motivate adult children to begin caregiving. The research described here examined how an elderly parent's memory behavior might influence caregiving decisions. In addition, gender, ethnicity, and parent-adult child closeness were examined to explore how these individual difference variables might influence those caregiving decisions.^ Participants read one of two vignettes describing a social visit with an elderly widow (target). In the vignette, the elderly target experiences several instances of forgetting. The vignettes depicted forgetting behavior established in pilot work as normal or serious. The normal forgetting vignette did not arouse concern and the serious forgetting vignette did arouse concern when the middle-aged participants imagined their mothers in the role of the vignette target. Participants rated their likelihood of engaging in eight caregiving behaviors if their mothers behaved like the vignette target. They also rated their closeness with their own mothers.^ Multivariate analyses of variance indicated main effects for vignette type, gender, ethnicity, and attachment. The likelihood of caregiving was higher when forgetting was more serious and when participants were female, Hispanic, and were highly attached to their mothers. Interaction effects showed that gender differences decreased with increased seriousness of forgetting, and ethnic differences were only significant for the normal forgetting condition.^ Multiple regression analyses indicated that attachment was the most significant predictor of likelihood of caregiving. Gender and ethnicity predicted specific caregiving behaviors. Females were more likely to engage in phoning and cooking, and Hispanics were more likely to engage in visiting and suggesting mother move in. ^

Beliefs of Icelandic elderly living in the greater Reykjavik area toward autonomy and paternalism in caregiving of the elderly

With the aging population and the increase in health care costs, issues of independence and autonomy will have a greater impact on formal and informal health care. Changes in occupational functioning that accompany increased age has raised the demandfor family assistance to the elderly. It is important for occupational therapists to understand the elderly's perceptions toward autonomy and paternalism in caregiving of the elderly because it is assumed that attitudes and beliefs affect how people interact and care for the elderly. A convenience sample of 57 Icelandic elderly were surveyed regarding their attitudes toward autonomy and paternalism in caregiving of the elderly. Results indicated that Icelandic elderly held strong beliefs toward autonomy but were undecided toward paternalism. Significant differences were found between groups. Elderly living at home indicated stronger beliefs on both autonomy and paternalism compared to those living in senior housing complexes. Elderly women held stronger beliefs in autonomy in contrast to the males, who were more paternalistic, and married subjects held stronger beliefs than did single respondents.

Informal caregiving and mental ill health – differential relationships by workload, gender, age and area-remoteness in a UK region

Informal caregiving can be a demanding role which has been shown to impact on physical, psychological and social wellbeing. Methodological weaknesses including small sample sizes and subjective measures of mental health have led to inconclusive evidence about the relationship between informal caregiving and mental health. This paper reports on a study carried out in a UK region which investigated the relationship between informal caregiving and mental ill health. The analysis was conducted by linking three datasets, the Northern Ireland Longitudinal Study, the Northern Ireland Enhanced Prescribing Database and the Proximity to Service Index from the Northern Ireland Statistics and Research Agency. Our analysis used both a subjective measure of mental ill health, i.e. a question asked in the 2011 Census, and an objective measure, whether the respondents had been prescribed antidepressants by a General Practitioner between 2010 and 2012. We applied binary logistic multilevel modelling to these two responses to test whether, and for what sub-groups of the population, informal caregiving was related to mental ill health. The results showed that informal caregiving per se was not related to mental ill health although there was a strong relationship between the intensity of the caregiving role and mental ill health. Females under 50, who provided over 19 hours of care, were not employed or worked part-time and who provided care in both 2001 and 2011 were at a statistically significantly elevated risk of mental ill health. Caregivers in remote areas with limited access to shops and services were also at a significantly increased risk as evidenced by prescription rates for antidepressants. With community care policies aimed at supporting people to remain at home, the paper highlights the need for further research in order to target resources appropriately.

CAREGIVING FOR A FAMILY MEMBER WITH HEAD AND NECK CANCER

Objective: To know the perception of informal caregivers regarding the care for a family member with head and neck cancer. Methods: Qualitative study conducted between March and May 2014 in the radiotherapy outpatient center of the Centro de Alta Complexidade em Oncologia – CACON (Oncology High Complexity Center) of the Hospital Universitário de Brasília – HUB (University Hospital of Brasília) using semi-structured interviews with nine caregivers about the experience of caring for family members. Data underwent Content Analysis and four units of meaning were identified: “Representation of cancer in the Family”, “The care as debt, individual reward or reconstruction of family ties”, “Repercussions of cancer on the caregiver’s personal life” and “Social support and network used by caregivers”. Results: Feelings of sadness and surprise at the moment of diagnosis were attributed to cancer, as well as the idea of punishment. The care was seen as personal satisfaction, accomplishment and opportunity for family rapprochement. Work overload and change in routine were altered functions. Religiosity, exchange of experience in the waiting room and institutional support appeared as coping strategies. Conclusion: The experience of caring for family members with head and neck cancer directly interferes in the lives of caregivers. Pointing out the institutional embracement as a strategy within the social network reinforces the importance of integrating the caregivers as a significant part of the health care plan developed by the health team.

A systematic review of the psychobiological burden of informal caregiving for patients with dementia: focus on cognitive and biological markers of chronic stress

As the physiological impact of chronic stress is difficult to study in humans, naturalistic stressors are invaluable sources of information in this area. This review systematically evaluates the research literature examining biomarkers of chronic stress, including neurocognition, in informal dementia caregivers. We identified 151 papers for inclusion in the final review, including papers examining differences between caregivers and controls as well as interventions aimed at counteracting the biological burden of chronic caregiving stress. Results indicate that cortisol was increased in caregivers in a majority of studies examining this biomarker. There was mixed evidence for differences in epinephrine, norepinephrine and other cardiovascular markers. There was a high level of heterogeneity in immune system measures. Caregivers performed more poorly on attention and executive functioning tests. There was mixed evidence for memory performance. Interventions to reduce stress improved cognition but had mixed effects on cortisol. Risk of bias was generally low to moderate. Given the rising need for family caregivers worldwide, the implications of these findings can no longer be neglected.

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.

Preliminary reliability and validity testing of a self-efficacy questionnaire for Chinese family caregivers

Objectives: To develop and test preliminary reliability and validity of a Self-Efficacy Questionnaire for Chinese Family Caregivers (SEQCFC). Methods: A cross-sectional survey of 196 family caregivers (CGs) of people with dementia (CGs) was conducted to determine the factor structure of a SEQCFC of people with dementia. Following factor analyses, preliminary testing was performed, including internal consistency, 4-week test retest reliability, and construct and convergent validity. Results: Factor analyses with direct oblimin rotation were performed. Eight items were removed and five subscales(selfefficacy for 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) were identified. The Cronbach’s alpha coefficients for the whole scale and for each subscale were all over 0.80. The 4-week testretest reliabilities for the whole scale and for each subscale ranged from 0.64 to 0.85. The convergent validity was acceptable. Conclusions: Evidence for the preliminary testing of the SEQCFC was encouraging. A future follow-up study using confirmatory factor analysis with a new sample from different recruitment centres in Shanghai will be conducted. Future psychometric property testings of the questionnaire will be required for CGs from other regions of mainland China.

Intercultural residential care in New Zealand

Along with other Organization for Economic Cooperation and Development (OECD) countries, New Zealand’s society is aging such that an increase in the number of older people requiring residential care is predicted. What cannot be foreseen is how culturally defined health beliefs affect the care given to older people in residential care. In this article, the authors describe and discuss the culturally based health beliefs of some Pacific Islands caregivers and predominately European (Pakeha) older people resident at one long-term care facility in Auckland, New Zealand. The delivery of care is influenced by culturally related beliefs about “being old.” Racism is evident in residential care, and the authors discuss the reactions of caregivers, residents, and management. This research extends the discussion of caregiving and receiving into the cross-cultural setting, and the findings highlight a number of elements in cultural differences between carer and cared-for that might affect care practices at the residential facility studied.