Quality of life of Australian family carers : implications for research, policy and practice

Abstract As part of an international,multicentered project, the burden of care, health, and subjective well-being experienced by select Australian family carers supporting a relative with disability at home were investigated. Some 448 family carers residing in New South Wales and Tasmania completed a battery of instruments, including a self-report demographic survey, the Family Caregiver Burden Inventory, the General Health Questionnaire, and the Personal Wellbeing Index. Respondents were predominantly females (mean
age = 48 years), married, and supporting a son or daughter with an intellectual disability (mean age = 18 years). Although caring for their family member was not perceived to be a burden, respondents reported notable limitations on their social networks and social activities. They reported higher levels of unemployment than would be expected for the general population and were over represented in lower income groups. They reported seriously low levels of mental health and personal well-being when compared with the general population. The findings revealed that this group of family carers were at high risk of social and economic disadvantage and at high risk of mental health challenges. Social policy makers and service providers should take these factors into account, both in the interests of promoting the health and well-being of the carers and considering the long-term needs of family members with disability who rely on family carers for daily support when designing services.

Predictors of quality of life in carers for people with a progressive neurological illness: a longitudinal study

Purpose The aim of the present research was to determine the predictors of quality of life (QOL) among carers for people living with a chronic degenerative neurological illness, with comparisons of the differences in significant predictors of QOL between illness groups.
Methods Psychosocial and economic variables were examined among 192 carers for people living at home with motor neurone disease, Huntington’s disease, multiple sclerosis, and Parkinson’s, over a twelve-month period, to determine their contribution to the prediction of carer QOL.
Results Mood was the only consistent predictor of carer QOL across groups; however, marital relationship satisfaction, social support satisfaction, income, and economic pressure significantly predicted carer QOL for at least one of the illness groups, in addition to mood.
Conclusions The findings highlight the importance of recognising the varying roles that psychosocial and economic variables play on the prediction of carer QOL within each of these illness groups.

Quality care outcomes following transitional care interventions for older people from hospital to home: a systematic review

 Background
Provision of high quality transitional care is a challenge for health care providers in many western countries. This systematic review was conducted to (1) identify and synthesise research, using randomised control trial designs, on the quality of transitional care interventions compared with standard hospital discharge for older people with chronic illnesses, and (2) make recommendations for research and practice.

Methods
Eight databases were searched; CINAHL, Psychinfo, Medline, Proquest, Academic Search Complete, Masterfile Premier, SocIndex, Humanities and Social Sciences Collection, in addition to the Cochrane Collaboration, Joanna Briggs Institute and Google Scholar. Results were screened to identify peer reviewed journal articles reporting analysis of quality indicator outcomes in relation to a transitional care intervention involving discharge care in hospital and follow-up support in the home. Studies were limited to those published between January 1990 and May 2013. Study participants included people 60 years of age or older living in their own homes who were undergoing care transitions from hospital to home. Data relating to study characteristics and research findings were extracted from the included articles. Two reviewers independently assessed studies for risk of bias.

Results
Twelve articles met the inclusion criteria. Transitional care interventions reported in most studies reduced re-hospitalizations, with the exception of general practitioner and primary care nurse models. All 12 studies included outcome measures of re-hospitalization and length of stay indicating a quality focus on effectiveness, efficiency, and safety/risk. Patient satisfaction was assessed in six of the 12 studies and was mostly found to be high. Other outcomes reflecting person and family centred care were limited including those pertaining to the patient and carer experience, carer burden and support, and emotional support for older people and their carers. Limited outcome measures were reported reflecting timeliness, equity, efficiencies for community providers, and symptom management.

Conclusions
Gaps in the evidence base were apparent in the quality domains of timeliness, equity, efficiencies for community providers, effectiveness/symptom management, and domains of person and family centred care. Further research that involves the person and their family/caregiver in transitional care interventions is needed.

Caregiver burden as a predictor of depression among family and friends who provide care for persons with bipolar disorder

OBJECTIVES: Over one-third of caregivers of people with bipolar disorder report clinically significant levels of depressive symptoms. This study examined the causal relationship between depression and caregiver burden in a large sample of caregivers of adult patients with bipolar disorder. METHODS: Participants were 500 primary caregivers of persons with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder (STEP-BD).This study evaluates the strength and direction of the associations between caregiver burden and depressive symptoms at baseline and at six- and 12-month follow-up using cross-lagged panel analyses, controlling for the clinical status of patients and sociodemographic variables. RESULTS: Higher levels of overall caregiver burden at baseline were associated with increased levels of depressive symptoms among caregivers at follow-up (F = 8.70, df = 1,290, p < 0.001), after controlling for baseline caregiver depression, gender, race, age, social support, and patients' clinical status. By contrast, caregiver depression at baseline was not significantly associated with caregiver burden at follow-up (F = 1.65, p = 0.20). CONCLUSIONS: Caregiver burden is a stronger predictor of caregiver depressive symptoms over time than the reverse. Interventions that help alleviate caregiver burden may decrease depressive symptoms.

Family caregivers of the mentally ill and adaptive coping

The issue investigated in this thesis concerned the adaptive coping strategies that caregivers of the mentally ill adopt at different stages of encounter with their family member’s illness. Specifically, family caregivers’ responses to the illness were investigated within the parameters of the Spaniol and Zipple (1994) 4-stage model of the evolution of caregivers’ responses to mental illness. The accuracy of the model’s representation of the experience of caregivers across all kinship relationships to the care-recipient was evaluated. Spaniol and Zipple proposed four stages which they termed (1) Discovery/Denial, (2) Recognition/Acceptance, (3) Coping and (4) Personal/Political Advocacy. The first stage is characterised by persistent denial of mental illness and seeking answers from multiple sources. The second stage involves caregivers’ expectations of professionals providing answers when the illness is recognised. At this stage caregivers experience guilt, embarrassment and blame. The cyclical nature of the illness impedes acceptance and caregivers experience a deep sense of loss and crisis of meaning as they gradually accept the reality of the situation. In the third stage coping replaces grieving and the issues encountered include loss of faith in professionals, disruption to family life and recurrent crises. Belief in family expertise grows and the focus of coping changes. The fourth stage proposes that caregivers become more assertive, self-blame decreases and the focus is upon changing the system. New meanings and values are integrated. This study found that the model did not accurately describe the experience of all caregivers. Caregiver did not deny mental illness and adaptive coping occurred throughout all stages. Coping evolved as the issues encountered changed and was independent of resolution of grief. The issues encountered were more extensive than the model proposed and differed according to kinship relationship to the care recipient. The ways in which adaptive coping evolved were identified, as were the issues and their accompanying responses. Caregivers coped by adaptively responding to the requirements of care provision, maintaining a sense of self worth and generating positive effect.

Psychosocial care of family of critically-ill patients in emergency departments

Responding to families with a critically ill relative is difficult for emergency department clinicians. This innovative research program used best evidence, integrated with perspectives from families and clinicians, to develop context specific guidelines and sensitive tools to assist emergency department clinicians provide quality psychosocial care to meet multidimensional family needs.

The primary caregiver approach

The early years of a child’s life are especially important, and the quality of those experiences set the scene for the future. Children’s first and most enduring bond is within their own family. However, a high proportion of young children in the Australia spend time as the responsibility of non-family adults within the many different types of early years settings.

The NQS outlines through Quality Area 5: Relationships with children, the need for educators to develop and maintain respectful and equitable relationships with each child. These relationships are brought about by educators and children forming trusting and reciprocal bonds where each child feels secure and included.

This book gives practical advice on:

the importance of attachment for children’s emotional wellbeing
implications for early years educators and the need for a primary caregiver system in group settings
details of the role of a primary caregiver for children and their families
dealing with uncertainty about how the primary caregiver system should work
how managers can support educators in their primary caregiver role

Parent and family factors associated with service use by young people with mental health problems: a systematic review

AIM: To conduct a systematic review of parent and family factors associated with service use for young people with mental health problems, to inform early intervention efforts aimed at increasing service use by young people. METHODS: A systematic search of academic databases was performed. Articles were included in the review if they had: a sample of young people aged between 5 and 18 years; service use as the outcome measure; one or more parental or family variables as a predictor; and a comparison group of non-service using young people with mental health problems. In order to focus on factors additional to need, the mental health symptoms of the young person also had to be controlled for. Stouffer's method of combining P-values was used to draw conclusions as to whether or not associations between variables were reliable. RESULTS: Twenty-eight articles were identified investigating 15 parental or family factors, 7 of which were found to be associated with service use for a young person with mental health needs: parental burden, parent problem perception, parent perception of need, parent psychopathology, single-parent household, change in family structure and being from the dominant ethnic group for the United States specifically. Factors not found to be related to service use were: family history of service use, parent-child relationship quality, family functioning, number of children, parent education level, parent employment status, household income and non-urban location of residence. CONCLUSIONS: A number of family-related factors were identified that can inform effective interventions aimed at early intervention for mental health problems. Areas requiring further research were also identified.

Building the capacity of family day care educators to promote children’s social and emotional wellbeing: Results of an exploratory cluster randomised-controlled trial

© 2015 Early Childhood Australia Inc. All rights reserved. THIS PAPER PRESENTS THE results of an exploratory cluster randomised-controlled trial that was used to pilot Thrive, a capacity-building program for family day care (FDC) educators. Participants were educators and coordinators from one FDC service in Melbourne, Australia. Data collection consisted of a survey including information on costs, an in-home quality of care observation and process evaluation. Data was collected over 12 months (2011–2012), at baseline and one, six and 12 months post-intervention. Positive caregiver interaction scores increased over time for the intervention group: F (3, 51.69) = 3.08, p < 0.05, and detached interaction scores decreased over time: F (3, 51.19) = 2.78, p < 0.05. Educators’ knowledge and confidence in children’s social and emotional wellbeing showed no significant change. Thrive gives important information about the challenges FDC educators face and is relevant to implementing changes in their education and support. For a program like Thrive to be successful in engaging educators, a stronger framework for supporting additional learning activities at both the FDC organisational and scheme level is warranted.