Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

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.

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.

Self-efficacy moderation and mediation roles on BPSD and social support influences on subjective caregiver burden in Chinese spouse caregivers of dementia patients

Background: This study aims to explore moderation and mediation roles of caregiver self-efficacy between subjective caregiver burden and (a) behavioral and psychological symptoms (BPSD) of dementia; and (b) social support. Methods: A cross-sectional study with 137 spouse caregivers of dementia patients was conducted in Shanghai. We collected demographic information for the caregiver–patient dyads, as well as information associated with dementia-related impairments, caregiver social support, caregiver self-efficacy, and SF-36. Results: Multiple regression analysis showed that caregiver self-efficacy was a moderator both between BPSD and subjective caregiver burden, and social support and subjective caregiver burden. Results also showed a partial mediation effect of caregiver self-efficacy on the impact of BPSD on subjective caregiver burden, and a mediation effect of social support on subjective caregiver burden. Caregiver self-efficacy and subjective burden significantly influenced BPSD and social support. Conclusion: Caregiver self-efficacy played an important role in the paths by which the two factors influenced subjective burden. Enhancing caregiver self-efficacy for symptom management (particularly BPSD) can be an essential strategy for determining interventions to support dementia caregivers in China, and possibly in other countries.

Nutritional challenges for the family caregiver and person with dementia dyad

ABSTRACT Background: The majority of people with dementia live at home until quite late in the disease trajectory, supported by family caregivers who typically take increasing responsibility for providing nutrition. Caregiving is highly stressful and thus both dyad partners are at risk of nutritional issues. Objective: This study evaluated the nutritional status of both dyad members and the associations between these. Design Descriptive, correlational Setting Community Participants 26 dyads of persons with dementia and caregivers Measurements: The nutritional status of each dyad member was evaluated at home using a comprehensive battery of measures including the Mini-Nutritional Assessment, Corrected Arm Muscle Area and a 3-day food diary. Stage of dementia and functional eating capacity was measured for the person with dementia. Caregivers completed a brief burden scale. Results: Of those with dementia (n = 26), a large proportion had nutritional issues (one was malnourished and another 16 were at risk). Six of the caregivers were at risk of malnutrition. In addition, fifteen of the people with dementia did not meet their recommended daily energy requirements. A moderate and significant positive correlation between functional eating skills and nutritional status (MNA score) among participants with dementia was found (r =.523, n = 26, p.006). Conclusion: These findings suggest that a dyadic perspective of nutritional status provides important insights into risk in this vulnerable group. Specifically, monitoring of the functional eating independence skills of the person with dementia is critical, along with assisting caregivers to be aware of their own eating patterns and intake.

Quality of life and caregiver outcomes following decompressive hemicraniectomy for severe stroke: A narrative literature review

AIMS The aim of this narrative review of the literature was to examine the current state of knowledge regarding the impact of aggressive surgical interventions for severe stroke on patient and caregiver quality of life and caregiver outcomes. BACKGROUND Decompressive hemicraniectomy (DHC) is a surgical therapeutic option for treatment of massive middle cerebral artery infarction (MCA), lobar intracerebral hemorrhage (ICH), and severe aneurysmal subarachnoid hemorrhage (aSAH). Decompressive hemicraniectomy has been shown to be effective in reducing mortality in these three life-threatening conditions. Significant functional impairment is an experience common to many severe stroke survivors worldwide and close relatives experience decision-making difficulty when confronted with making life or death choices related to surgical intervention for severe stroke. DATA SOURCES Academic Search Premier, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Medline, and PsychInfo. REVIEW METHODS A narrative review methodology was utilized in this review of the literature related to long-term outcomes following decompressive hemicraniectomy for stroke. The key words decompressive hemicraniectomy, severe stroke, middle cerebral artery stroke, subarachnoid hemorrhage, lobar ICH, intracerebral hemorrhage, quality of life, and caregivers, literature review were combined to search the databases. RESULTS Good functional outcomes following DHC for life-threatening stroke have been shown to be associated with younger age and few co-morbid conditions. It was also apparent that quality of life was reduced for many stroke survivors, although not assessed routinely in studies. Caregiver burden has not been systematically studied in this population. CONCLUSION Most patients and caregivers in the studies reviewed agreed with the original decision to undergo DHC and would make the same decision again. However, little is known about quality of life for both patients and caregivers and caregiver burden over the long-term post-surgery. Further research is needed to generate information and interventions for the management of ongoing patient and carer recovery following DHC for severe stroke.

Translating training in the NYU Caregiver Intervention in Australia: Maintaining fidelity and meeting graduate standards in an online continuing professional education setting

The aim of this study was to develop an Internet-based self-directed training program for Australian healthcare workers to facilitate learning and competence in delivery of a proven intervention for caregivers of people with dementia: The New York University Caregiver Intervention (NYUCI). The NYUCI is a nonpharmacological, multicomponent intervention for spousal caregivers. It is aimed at maintaining well-being by increasing social support and decreasing family discord, thereby delaying or avoiding nursing home placement of the person with dementia. Training in the NYUCI in the United States has, until now, been conducted in person to trainee practitioners. The Internet-based intervention was developed simultaneously for trainees in the U.S. and Australia. In Australia, due to population geography, community healthcare workers, who provide support to older adult caregivers of people with dementia, live and work in many regional and rural areas. Therefore, it was especially important to have online training available to make it possible to realize the health and economic benefits of using an existing evidence-based intervention. This study aimed to transfer knowledge of training in, and delivery of, the NYUCI for an Australian context and consumers. This article details the considerations given to contextual differences and to learners’ skillset differences in translating the NYUCI for Australia.

Aggressive surgical interventions for severe stroke: Impact on quality of life, caregiver burden and family outcomes

Introduction: Decompressive hemicraniectomy, clot evacuation, and aneurysmal interventions are considered aggressive surgical therapeutic options for treatment of massive cerebral artery infarction (MCA), intracerebral hemorrhage (ICH), and severe subarachnoid hemorrhage (SAH) respectively. Although these procedures are saving lives, little is actually known about the impact on outcomes other than short-term survival and functional status. The purpose of this study was to gain a better understanding of personal and social consequences of surviving these aggressive surgical interventions in order to aid acute care clinicians in helping family members make difficult decisions about undertaking such interventions. Methods: An exploratory mixed method study using a convergent parallel design was conducted to examine functional recovery (NIHSS, mRS & BI), cognitive status (Montreal Cognitive Assessment Scale, MoCA), quality of life (Euroqol 5-D), and caregiver outcomes (Bakas Caregiver Outcome Scale, BCOS) in a cohort of patients and families who had undergone aggressive surgical intervention for severe stroke between the years 2000–2007. Data were analyzed using descriptive statistics, univariate and multivariate analysis of variance, and multivariate logistic regression. Content analysis was used to analyze the qualitative interviews conducted with stroke survivors and family members. Results: Twenty-seven patients and 13 spouses participated in this study. Based on patient MOCA scores, overall cognitive status was 25.18 (range 23.4-26.9); current functional outcomes scores: NIHSS 2.22, mRS 1.74, and BI 88.5. EQ-5D scores revealed no significant differences between patients and caregivers (p=0.585) and caregiver outcomes revealed no significant differences between male/female caregivers or patient diagnostic group (MCA, SAH, ICH; p=""0.103).<"/span><"/span> Discussion: Overall, patients and families were satisfied with quality of life and decisions made at the time of the initial stroke. There was consensus among study participants that formal community-based support (e.g., handibus, caregiving relief, rehabilitation assessments) should be continued for extended periods (e.g., years) post-stroke. Ongoing contact with health care professionals is valuable to help them navigate in the community as needs change over time.

Burden of care and general health in families of patients with schizophrenia

Background: De-institutionalization of psychiatric patients has led to a greater emphasis on family management in the community, and family members are often overwhelmed by the demands that caring for a patient with schizophrenia involves. Most studies of family burden in schizophrenia have taken place in developed countries. The current study examined family burden and its correlates in a regional area of a medium income country in South America. Method: Sixty-five relatives of patients with schizophrenia who were attending a public mental health out-patient service in the province of Arica, Chile, were assessed on Spanish versions of the Zarit Caregiver Burden Scale and SF-36 Health Survey (SF-36). Results: Average levels of burden were very high, particularly for mothers, carers with less education, carers of younger patients and carers of patients with more hospitalisations in the previous 3 years. Kinship and number of recent hospitalisations retained unique predictive variance in a multiple regression. Burden was the strongest predictor of SF-36 subscales, and the prediction from burden remained significant after entry of other potential predictors. Conclusions: In common with families in developed countries, family members of schizophrenia patients in regional Chile reported high levels of burden and related functional and health impact. The study highlighted the support needs of carers in contexts with high rates of poverty and limited health and community resources.

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.

Turning Around Talipes: Nursing Considerations

The management of congenital talipes equinovarus (TEV) has received much clinical and research attention within the disciplines of medicine and physiotherapy. However, few articles have been published about the role of the registered nurse in contributing to the optimum health and wellbeing of the child and family presenting for assessment and treatment of the condition. Much of the most intense treatment for TEV occurs in the first few weeks of the child’s life; a time of critical growth and development when the infant is both sensitive and vulnerable to the environment within which it is nurtured. This is also a crucial time for developing a secure attachment to the caregiver and nurses can assist parents in optimising their infant’s opportunities for a secure attachment relationship. This paper thus provides an overview of the medical and physiotherapy management of TEV and highlights the role nurses have in providing nursing care and psycho-social support to parents of infants with TEV, in areas such as the maintenance of skin integrity and circulation, providing effective pain relief, and optimising growth, development, and a secure attachment relationship. Congenital TEV or 'club foot' is one of the most common congenital orthopaedic anomalies of infants. In Queensland in 2000, in approximately 50,000 births, 244 infants were born with talipes; almost five infants per 1000 births. National statistics are not as specific, with coding providing only 'other lower limb' as the category that would encompass talipes; the 1997 national incidence of such lower limb congenital malformations is reported as 1.7 per 10,000 births 1.

Initial psychometric evaluation of the Wayfinding Effectiveness Scale

This study evaluates three versions of the Wayfinding Effectiveness Scale (WES), developed to differentiate problems of wayfinding and wandering behavior of community-residing elders with dementia (EWD), in 266 dyads (EWD and caregiver) recruited from Alzheimer's Association chapters. Factor analyses yield a five-factor solution (explained variance = 62.6%): complex wayfinding goals, analytic strategies, global strategies, simple wayfinding goals, and being stimulus bound. Overall, internal consistencies are high: WES (.94-.95), and subscales are stable across all versions. Testretest reliability is acceptable for the overall WES and two subscales (complex and simple wayfinding goals) for the care recipient current behavior version. Construct validity is supported by the pattern of correlations among subscales and analyses of variance (ANOVAs) showing significant differences among the care recipient (current vs. prior behavior) and caregiver versions overall and for all subscales. Results support the WES as a valid and reliable measure of wayfinding effectiveness in persons with dementia.

Facilitating needs based cancer care for people with a chronic disease : evaluation of an intervention using a multi-centre interrupted time series design

Background: Palliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer. ---------- Methods/design: People with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation. The intervention, introduced after at least two baseline phone interviews, involved a) training medical, nursing and allied health professionals at each recruitment site on the use of the Palliative Care Needs Assessment Guidelines and the Needs Assessment Tool: Progressive Disease - Cancer (NAT: PD-C); b) health professionals completing the NAT: PD-C with participating patients approximately monthly for the rest of the study period. Changes in outcomes will be compared pre-and post-intervention.---------- Discussion: The study will determine whether the routine, systematic and regular use of the Guidelines and NAT: PD-C in a range of clinical settings is a feasible and effective strategy for facilitating the timely provision of needs based care.

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.