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.

Their children's first educators : parents' views about child sexual abuse prevention education

In this descriptive focus group study, we investigated parents’ views about child sexual abuse prevention education at home and in schools. Focus groups were conducted with a sample of 30 Australian adults who identified as the parent or caregiver of a child/children aged 0–5 years. The study explored (1) parents’ knowledge about child sexual abuse prevention, (2) the child sexual abuse prevention messages they provided to their children and the topics they discussed, (3) their attitudes towards child sexual abuse prevention education in schools, and (4) their preferences for content. Data analysis provided seven key themes in these four areas: knowledge (the inadequacy of their own prevention education; and how important is stranger danger now?); messages (bodies, touching, and relationships; the role of protective adults; and parent–child communication); attitudes (voice and choice); and preferences (not the nitty gritty, just the basics). The findings may be useful in assisting school authorities and providers of child sexual abuse prevention programs to better understand parents’ contributions to child sexual abuse prevention education, and their perspectives in relation to provision of school-based prevention programs.

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.

Attitudes and expectations of technologies to manage high risk wandering and elopement in persons with dementia : an Australian perspective

Wandering is aimless and repetitive locomotion that may expose persons with dementia (PWD) to elopement, getting lost and death. This study is an Australian replication of a US study. Cross-disciplinary consensus- based analysis was applied to data from five focus groups (N =47: cognitively intact LTC residents (5), carers of PWD (11), home care workers (13) allied health professionals and health-focused engineers (7) and RNs (11). Groups received briefing about wandering monitoring and elopement management systems. Consistent with US attitudes, participants in all groups agreed on what a wandering technology should do, how it should do it, and necessary technical specifications. Within each group participants raised the need for a continuum of care for PWD and the imperative for early recognition of potentially dangerous wandering and getting lost when they occur. Global Positioning System elopement management was the preferred option. Interestingly, the prospective value of GPS to recover a lost or eloped wanderer far outweighed privacy concerns, as in the US. A pervasive theme was that technologies need to augment, but cannot replace, attentive, compassionate caregiver presence. A significant theme raised only by Australian carers of PWD was the potential for development of implantable GPS technologies and the need for public debate about attendant ethical issues. Given that 60% or more of over 200,000 Australians and 4.5 million Americans with dementia will develop wandering, there is a pressing need to develop effective locator systems that may delay institutionalization, help allay carer concern and enhance PWD safety.

Overdue choices : how information and role in decision-making influence women's preferences for induction for prolonged pregnancy

Background: Enabling women to make informed decisions is a crucial component of consumer-focused maternity care. Current evidence suggests that health care practitioners’ communication of care options may not facilitate patient involvement in decision-making. The aim of this study was to investigate the effect of specific variations in health caregiver communication on women’s preferences for induction of labor for prolonged pregnancy. Methods: A convenience sample of 595 female participants read a hypothetical scenario in which an obstetrician discusses induction of labor with a pregnant woman. Information provided on induction and the degree of encouragement for the woman’s involvement in decision-making was manipulated to create four experimental conditions. Participants indicated preference with respect to induction, their perceptions of the quality of information received, and other potential moderating factors. Results: Participants who received information that was directive in favor of medical intervention were significantly more likely to prefer induction than those given nondirective information. No effect of level of involvement in decision-making was found. Participants’ general trust in doctors moderated the relationship between health caregiver communication and preferences for induction, such that the influence of information provided on preferences for induction differed across levels of involvement in decision-making for women with a low trust in doctors, but not for those with high trust. Many women were not aware of the level of information required to make an informed decision. Conclusions: Our findings highlight the potential value of strategies such as patient decision aids and health care professional education to improve the quality of information available to women and their capacity for informed decision-making during pregnancy and birth. (BIRTH 39:3 September 2012)

Accelerated professional development and peer consultation : two strategies for continuing professional education for nurses

A comparison was made of accelerated professional development (APD) for nurses (n=64), involving peer consultation and reflective practice, and peer consultation alone (n=30). Although APD participants had a higher completion rate, improvements in caregiver behaviors and work environment were not significantly different.

A longitudinal study of grieving in family caregivers of people with dementia

A longitudinal study of grieving in family caregivers of people with dementia Recent research into dementia has identified the long term impact that the role of care giving for a relative with dementia has on family members This is largely due to the cognitive decline that characterises dementia and the losses that can be directly attributed to this. These losses include loss of memories, relationships and intimacy, and are often ambiguous so that the grief that accompanies them is commonly not recognised or acknowledged. The role and impact of pre-death or anticipatory grief has not previously been widely considered as a factor influencing health and well-being of family caregivers. Studies of grief in caregivers of a relative with dementia have concluded that grief is one of the greatest barriers to care giving and is a primary determinant of caregiver well-being. The accumulation of losses, in conjunction with experiences unique to dementia care giving, place family caregivers at risk of complicated grief. This occurs when integration of the death does not take place following bereavement and has been associated with a range of negative health outcomes. The aim of this research was to determine the influence of grief, in addition to other factors representing both positive and negative aspects of the role, on the health related quality of life of family caregivers of people with dementia, prior to and following the death of their relative with dementia. An exploratory research project underpinned by a conceptual framework of caregivers’ adaptation in the context of subjective appraisal of the strains and gains in their role was undertaken. The research comprised three studies. Study 1 was a scoping study that involved a series of semi-structured interviews with thirteen participants who were family caregivers of people with severe dementia or whose relative with dementia had died in the previous twelve months. The results of this study in conjunction with factors identified in the literature informed data collection for the further studies. Study 2 was a cross sectional survey of fifty caregivers recruited when their relative was in the moderate to severe stage of dementia. This study provided the baseline data for Study 3, a prospective cohort follow up study. Study 3 consisted of seventeen participants followed up at two time points after the death of their relative with dementia: six weeks and then six months following the death of the relative with dementia. The scoping study indicated that differences in appraisal of the care giving role and encounters with health professionals were related to levels of grief of caregivers prior to and following the death of the relative with dementia. This was supported in the baseline and follow up studies. In the baseline study, after adjusting for all variables in multivariate regression models, subjective appraisal of burden was found to make a significant contribution (p<.05) to mental health related quality of life. The two dependent variables, anticipatory grief and mental health related quality of life, were significantly (p<.01) correlated at a bivariate level. In the follow up study, linear mixed modelling and multiple regression analysis of data found that subjective appraisal of burden and resilience were significantly associated (p<.05 and p<.01, respectively) with mental health related quality of life over time. In addition, bereavement and complicated grief were significantly associated (p<.05) with mental health following the death of the relative. In this study social support and satisfaction with end of life care were found to be statistically associated (p<.05) with physical health related quality of life over time. The strong relationship between grief of caregivers and their health related quality of life over the entire care giving trajectory and period following the death of their relative highlights the urgent need for further research and interventions in this area. Overall results indicate that addressing the risk and protective factors including subjective appraisal of their care giving role, resilience, social support and satisfaction with end of life care of their relative, has the potential to both ameliorate negative health outcomes and to promote improved health for these caregivers. This research provides important information for development of targeted and appropriate interventions that aim to promote resilience and reduce the personal burden on caregivers of people with dementia.

Primary classroom teachers' use of social and emotional wellbeing programs and the factors influencing program use

There has been a rapid escalation in the development and evaluation of social and emotional well-being (SEW) programs in primary schools over the last few decades. Despite the plethora of programs available, primary teachers’ use of SEW programs is not well documented in Australian schools, with even less consideration of the factors influencing program use. A cross-sectional survey was undertaken with primary classroom teachers across twelve schools in the Brisbane and Sunshine Coast Education Districts in Queensland, Australia, during 2005. A checklist of SEW programs and an audit of SEW practices in schools were employed to investigate the number, range and types of SEW programs used by primary classroom teachers and the contextual factors influencing program use. Whilst the majority of implementation studies have been conducted under intervention conditions, this study was designed to capture primary classroom teachers’ day-to-day use of SEW programs and the factors influencing program use under real-world conditions. The findings of this research indicate that almost three quarters of the primary classroom teachers involved in the study reported using at least one SEW program during 2005. Wide variation in the number and range of programs used was evident, suggesting that teachers are autonomous in their use of SEW programs. Evidence-based SEW programs were used by a similar proportion of teachers to non-evidence-based programs. However, irrespective of the type of program used, primary teachers overwhelmingly reported using part of a SEW program rather than the whole program. This raises some issues about the quality of teachers’ program implementation in real-world practice, especially with respect to programs that are evidence-based. A content analysis revealed that a wide range of factors have been examined as potential influences on teachers’ implementation of health promotion programs in schools, including SEW programs, despite the limited number of studies undertaken to date. However, variation in the factors examined and study designs employed both within and across health promotion fields limited the extent to which studies could be compared. A methodological and statistical review also revealed substantial variation in the quality of reporting of studies. A variety of factors were examined as potential influences on primary classroom teachers’ use of SEW programs across multiple social-ecological levels of influence (ranging from community to school and individual levels). In this study, parent or caregiver involvement in class activities and the availability of wellbeing-related policies in primary schools were found to be influential in primary classroom teachers’ use of SEW programs. Teachers who often or always involve parents or caregivers in class activities were at a higher odds of program use relative to teachers who never or rarely involved parents or caregivers in class activities. However, teachers employed in schools with the highest number of wellbeing-related policies available were at a lower odds of program use relative to teachers employed in schools with fewer wellbeing-related policies available. Future research should investigate primary classroom teachers’ autonomy and motivations for using SEW programs and the reasons behind the selection and use of particular types of programs. A larger emphasis should also be placed upon teachers not using SEW programs to identify valid reasons for non-use. This would provide another step towards bridging the gap between the expectations of program developers and the needs of teachers who implement programs in practice. Additionally, the availability of wellbeing-related school policies and the types of activities that parents and caregivers are involved with in the classroom warrant more in-depth investigation. This will help to ascertain how and why these factors influence primary classroom teachers’ use of SEW programs on a day-to-day basis in schools.

(Re)-regulating care : employing foreign carers for older persons in Taiwan

The purpose of this research was to develop a theoretical understanding of the social phenomenon of the employment of foreign carers for older Taiwanese in households. Foreign carers were introduced into Taiwan in 1992 to address the care needs of the older population. By 2012, over 200,000 foreign caregivers from Indonesia, Philippines, and Vietnam were providing care in households in Taiwan. There has been little research on the interactions between and experiences of family employers, foreign carers and older persons receiving care. The theoretical framework brought together symbolic interactionist concepts and the social constructionism of Berger and Luckmann. Data collection and analysis were informed by Charmaz‘s formulation of grounded theory. Two focus groups and 54 in-depth interviews with a total of 57 Indonesian and Vietnamese foreign carers, Taiwanese family employers and older persons receiving care were undertaken. The analytical findings of the research reflect the ways in which the foreign carer, older persons receiving care and family employer participants were socially situated within the research context and how their respective social realities were shaped differently by changing social structures and cultural values within a globalising context. (Re)-regulating care was generated as the core category, forming a coherent and overarching framework that integrated the three analytical dimensions of the reality of the social change, resituating roles and struggling for control. The reality of social change refers to the employment of foreign carers as a manifestation of the reshaping of the social worlds of the three groups of participants. Resituating roles reflects the processes that underpin the hierarchical positioning of participants, the resultant asymmetrical power relations and associated interactions. Struggling for control, depicts how each group employed strategies to create space and identities that would sustain a sense of self and autonomy. In the current situation of economic and social change in Taiwan the three participant groups shared a desire for control. The autonomy of the women employers was negotiated through employment of foreign carers; for the foreign carers, a pragmatic decision to work abroad became a means for personal empowerment; and the older persons receiving care regained some authority through relationships with carers.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

The psychological experiences of adult heart transplant recipients : a systematic review and meta-summary of qualitative findings

Background Psychosocial factors and physical health are associated with increased psychological distress post-heart transplant. Integrating findings from qualitative studies could highlight mechanisms for how these factors contribute to psychological well-being, thus aiding the development of interventions. Objective To integrate qualitative findings regarding adult heart transplant recipients experiences, such as their emotions, perceptions and attitudes. Methods A systematic review and meta-summary were conducted. Data from seven studies were categorized into 16 abstracted findings. Results The most prominent finding across the studies related to recipients’ perceptions of the importance of social support. Other prominent findings related to factors that promoted psychological well-being, such as faith, optimism and sense of control. Conclusions Psychological well-being may be improved by enhancing perceived control over health and daily life, promoting an optimistic outlook by facilitating access to social support from other heart transplant recipients and ensuring post-transplant recipient-caregiver partnerships adequately support the transition back to independence.

Psychotropic medication use in adolescents with intellectual disability living in the community

Purpose Information on the use of psychotropic medications in adolescents with intellectual disability is scant. Such information can guide interventions to improve psychotropic medication use in this population. We investigated the prevalence of, and factors associated with, psychotropic medication use in adolescents with intellectual disability in Australia who live in the community. Methods Cross-sectional data were obtained from adolescents with intellectual disability living in the community in South East Queensland, Australia, between February 2007 and September 2010. Self-reported information on medication use was extracted from a health screening tool. Demographic and medical data were collected through parent/caregiver surveys. Medications were classified according to the Anatomical Therapeutic Chemical classification system. Psychopathology was assessed using the Developmental Behaviour Checklist Short Form. Logistic regression analysis was used to assess the association of demographic and medical characteristics with psychotropic medication use. Results There were 176 participants (median age = 16 years, range = 11–19 years; 55% male). Psychotropics were used by 20% of participants. Psychostimulants were the commonest psychotropic class, used by 9% of participants. Multipsychotropic prescribing was not common with only seven participants using more than one psychotropic agent. After adjusting for potentially confounding variables, use of psychotropic medications was significantly associated with male gender (adjusted odds ratio = 3.6; 95% confidence interval = 1.3–9.5) and having major behaviour problems (3.1; 1.1–8.9). Conclusions Adolescents with intellectual disability use a wide range of psychotropic medications. Being male and having major behaviour problems are associated with the use of psychotropic medications. Research examining the rationale for psychotropic prescribing in this population is needed. Copyright © 2013 John Wiley & Sons, Ltd.

An exploratory study of grief and health-related quality of life for caregivers of people with dementia

The aim of this qualitative study was to explore key positive and negative factors that impact on grief resolution and health outcomes of caregivers who were caring, or had cared, for a family member with dementia who had died. The study was a scoping study and involved face-to-face interviews with these family caregivers (N ¼ 13). Results indicated a complex interaction of issues (many unique to dementia caregiving) which in different combinations acted as protective or risk factors for caregiver outcomes. Interaction of individual characteristics, role appraisal, value of intrinsic and extrinsic resources, and experiences with health professionals during the caregiving period and around the death of their relative were shown to have the most influence on caregiver outcomes. Psychological resilience and satisfaction with caregiving were protective against negative outcomes while unresolved grief was a risk factor. These findings highlight the potential benefits of multicomponent, holistic dementia caregiver interventions.

Self-efficacy partially mediates between social support and health-related quality of life in family caregivers for dementia patients in Shanghai

Background: There is a paucity of research assessing health-related quality of life (HRQoL) and self-efficacy in caregivers of relatives with dementia in mainland China. Aims: To compare the level of HRQoL between caregivers and the general population in mainland China and to assess the role of caregiver self-efficacy in the relationship between caregiver social support and HRQoL. Methods: A cross-sectional study was conducted in Shanghai, China. The caregivers were recruited from the outpatient department of a teaching hospital. A total of 195 participants were interviewed, using a survey package including the Chinese version of the 36-Item Short-Form Health Survey (SF-36), demographic data, the variables associated with the impairments of care recipients, perceived social support and caregiver self-efficacy. The caregivers' SF-36 scores were compared with those of the general population in China. Results: The results indicated that the HRQoL of the caregivers was poorer compared with that of the general population when matched for age and gender. Multiple regression analyses revealed that caregiver self-efficacy is a partial mediator between social support and HRQoL, and a partial mediator between behavioral and psychological symptoms of dementia (BPSD) and caregiver mental health. Conclusion: Assisting with managing BPSD and enhancing caregiver self-efficacy can be considered integral parts of interventions to improve caregiver HRQoL.

Partial mediation role of self-efficacy between positive social interaction and mental health in family caregivers for dementia patients in Shanghai

We explored the mediation effect of caregiver self-efficacy on the influences of behavioral and psychological symptoms (BPSD) of dementia care recipients (CRs) or family caregivers’ (CGs) social supports (informational, tangible and affectionate support and positive social interaction) on CGs’ mental health. We interviewed 196 CGs, using a battery of measures including demographic data of the dyads, CRs’ dementia-related impairments, and CGs’ social support, self-efficacy and the Medical Outcome Study (MOS) Short-Form (SF-36) Health Survey. Multiple regression analyses showed that gathering information on self-efficacy and managing CG distress self-efficacy were the partial mediators of the relationship between positive social interaction and CG mental health. Managing caregiving distress self-efficacy also partial mediated the impact of BPSD on CG mental health. We discuss implications of the results for improving mental health of the target population in mainland China.