Samar Aoun

Part 1: Home-based family caregiving at the end of life: a comprehensive review of published quantitative research (1998-2008)

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research. Robust evidence regarding causal relationships between predictor variables and carer outcomes is lacking. Findings suggest the need for knowledge regarding: family caregiving for patients with non-malignant terminal conditions; whether needs and outcomes differ between family caregivers at the end of life and comparison groups; and caregiver outcomes in bereavement. Clear definitions of ‘family caregiving’, ‘end of life’, and ‘needs’ are required as well as greater application and testing of theoretical and conceptual explanations.

Caregiving for the terminally ill : at what cost?

This literature review exposes the nature and extent of physical and psychosocial morbidity and economic disadvantage, home palliative caregivers suffer as a direct result of their caregiving role. Research has demonstrated that caregivers providing support to individuals receiving palliative care report unmet needs for information, communication, service provision and support from health and community services. Three sets of challenges are highlighted in this literature review which help explain why the needs of home palliative caregivers are largely unmet: (i) barriers to seeking help; (ii) a dearth of research-based interventions focused on reducing the negative aspects of caregiving; and (iii) a number of impediments to effective policy and service development for family caregivers. Furthermore, invited submissions from caregivers echoed and confirmed the issues reported in the literature. Recommendations for enhancing caregiver support are outlined.

Supporting lay carers in end of life care: current gaps and future priorities

Informal carers are central to the achievement of end of life care and death at home and to policy aims of enabling patient choice towards end of life. They provide a substantial, yet hidden contribution to our economy. This entails considerable personal cost to carers, and it is recognised that their needs should be assessed and addressed. However, we lack good research evidence on how best to do this. The present position paper gives an overview of the current state of carer research, its gaps and weaknesses, and outlines future priorities. It draws on a comprehensive review of the carer literature and a consensus meeting by experts in the field. Carers’ needs and adverse effects of caregiving have been extensively researched. In contrast, we lack both empirical longitudinal research and conceptual models to establish how adverse effects may be prevented through appropriate support. A reactive, “repair” approach predominates. Evaluations of existing interventions provide limited information, due to limited rigour in design and the wide variety in types of intervention evaluated. Further research is required into the particular challenges that the dual role of carers as both clients and providers pose for intervention design, suggesting a need for future emphasis on positive aspects of caregiving and empowerment. We require more longitudinal research and user involvement to aid development of interventions and more experimental and quasi-experimental research to evaluate them, with better utilisation of the natural experiments afforded by intra- and international differences in service provision.

Predictors of Complicated Grief: A Systematic Review of Empirical Studies

A systematic review of the literature on predictors of complicated grief (CG) was undertaken with the aim of clarifying the current knowledge and to inform future planning and work in CG following bereavement. Predictors of CG prior to the death include previous loss, exposure to trauma, a previous psychiatric history, attachment style, and the relationship to the deceased. Factors associated with the death include violent death, the quality of the caregiving or dying experience, close kinship relationship to the deceased, marital closeness and dependency, and lack of preparation for the death. Perceived social support played a key role after death, along with cognitive appraisals and high distress at the time of the death. Inconsistent definitions of CG and measurement tools were noted in the earlier studies reviewed. Limitations identified in the studies included use of cross-sectional designs, heterogeneous samples, high attrition, demographic differences between cases and controls, differences in length of time since death, and differences in types of death experienced. Notwithstanding these limitations, some consistent findings have emerged. Further research into conceptualizations of CG in terms of attachment theory and constructivist and cognitive-behavioral concepts of finding purpose and meaning after bereavement is warranted.

Challenging the framework for evidence in palliative care research

This paper examines the debate about best evidence within the public health literature and proposes that similar arguments and concerns exist with respect to use of current evidence-based approaches to implementing research and evaluating the literature in palliative care. Whilst randomized controlled trials (RCTs) remain the gold standard and are appropriate in many instances of palliative care research, there is a need for an alternate research design framework that incorporates contextual and compositional effects pertinent to palliative care research. A framework, entitled Equity-Based Evidence, is discussed as an approach to evidence-based knowledge development in palliative care.

The Australian palliative care outcomes collaboration (PCOC) measuring the quality and outcomes of palliative care on a routine basis

Australia is leading the way in establishing a national system (the Palliative Care Outcomes Collaboration - PCOC) to measure the outcomes and quality of specialist palliative care services and to benchmark services across the country. This article reports on analysis of data collected routinely at point-of-care on 5939 patients treated by the first fifty one services that voluntarily joined PCOC. By March 2009, 111 services have agreed to join PCOC, representing more than 70% of services and more than 80% of specialist palliative care patients nationally. All states and territories are involved in this unique process that has involved extensive consultation and infrastructure and close collaboration between health services and researchers. The challenges of dealing with wide variation in outcomes and practice and the progress achieved to date are described. PCOC is aiming to improve understanding of the reasons for variations in clinical outcomes between specialist palliative care patients and differences in service outcomes as a critical step in an ongoing process to improve both service quality and patient outcomes.

Is It Feasible and Desirable to Collect Voluntarily Quality and Outcome Data Nationally in Palliative Oncology Care

Hospice/palliative care is a critical component of cancer care. In Australia, more than 85% of people referred to specialized hospice/palliative care services (SHPCS) have a primary diagnosis of cancer, and 60% of people who die from cancer will be referred to SHPCS. The Palliative Care Outcomes Collaboration (PCOC) is an Australian initiative that allows SHPCS to collect nationally agreed-upon measures to better understand quality, safety, and outcomes of care. This article describes data (October 2006 through September 2007) from the first 22 SHPCS, with more than 100 inpatient admissions annually. Data include phase of illness, place of discharge, and, at each transition in place of care, the persons functional status, dependency, and symptom scores. Data are available for 5,395 people for 6,379 admissions. After categorizing by phase of illness and dependency, there remain at the end of each admission 12-fold differences (mean, 26%; range, 4% to 52%) in the percentage of patients who became stable after an unstable phase; seven-fold differences (mean, 22%; range, 6% to 41%) in the percentage of patients with improved symptom scores, five-fold differences (mean, 25%; range, 12% to 64%) in discharge back to the community, four-fold differences (mean, 10%; range, 4% to 16%) in improved function, and three-fold differences in the length of stay (mean, 14 days; range, 6 to 19 days). PCOC shows it is feasible to collect quality national palliative care outcome data voluntarily. Variations in outcomes justify continued enrollment of services. Benchmarking should include all patients whose cancer will cause death and explore observed variations.

Motor Neurone Disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study

Background: Motor Neurone Disease (MND) is a neurodegenerative disease with a sudden onset, a rapid progression, a profile of complex disabilities and fatal consequences. Caring for a person with MND is an unremitting commitment, yet little research has examined the experiences and needs of carers for palliative care and bereavement care. Aim: This study explored the experiences of MND family carers, both during their time as carers and following bereavement. Particular attention was paid to the carers’ prolonged grief status and to the implications for service delivery, including palliative care. Design: A qualitative approach consisted of interviews with 16 bereaved family carers. The Prolonged Grief tool (PG-13) measured the carers’ prolonged grief. Setting/participants: sixteen family carers participated in the study, between one and four years after the death of their spouse from MND in Western Australia. Results: The thematic analysis of the interview transcripts revealed five themes – the work of family carers, the change in relationship from spouse to family carer, family caring as a series of losses, coping mechanisms of family carers and supportive and palliative care experiences of family carers. The six participants who met the criteria for prolonged grief disorder accessed palliative care at a later stage in the disease trajectory. Conclusions: The study provided a basis for more research into the role palliative care services has in supporting MND carers before and after the death of their spouse and in particular the provision of more tailored respite and bereavement support.

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

Who needs bereavement support? A population based survey of bereavement risk and support need.

This study identifies and describes the profiles of bereavement risk and support needs of a community sample in Australia and tests the fit of the data with the three-tiered public health model for bereavement support. Family members who were bereaved 6–24 months prior to the survey and who were clients of four funeral providers participated (May-July 2013). A postal survey was used to collect information about bereaved people’s experience of caring and perceived satisfaction with any bereavement support provided. The questionnaire included a validated risk assessment screening measure for Prolonged Grief Disorder (PG-13). A total of 678 bereaved people responded. The model predicted that 60% of the sample would be low risk, 30% moderate risk, and 10% high risk. Actual figures were very close at 58.4%, 35.2% and 6.4% respectively. The analysis of the demographic characteristics, experience and impact of caring and bereavement, and satisfaction with support received from a variety of sources revealed differential experiences and needs that align with the expectation of low, moderate, and high bereavement support need, as articulated in the public health model. This is the first empirical test of the public health model of bereavement support. As there is a lack of clear evidence to guide development and allocation of bereavement support programs, the findings have the potential to inform the ability of services, community organizations and informal networks to prioritize care according to each level of bereavement need. This is essential to achieve cost-effective and equitable resource allocation.