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.
BackgroundPeople with schizophrenia are at risk of receiving poorer end of life care than other patients. They are often undertreated, avoid treatment and are about half as likely to access palliative care. There are limited options for end of life care for this under-serviced group in need. This study aims to address the paucity of research by documenting possible need, experiences of health care service use and factors affecting palliative care use for people with schizophrenia who have advanced life limiting illness.MethodsSemi-structured interviews were undertaken with 16 experienced health professionals caring for people with schizophrenia in Western Australia. The interviews focussed on their perceptions and experiences of end of life care, their patients’ unmet needs, palliative care options, and suggested services to support this vulnerable group and improve health care provision. The research used a qualitative design and thematic analyses.ResultsThe participants all advocated strongly for their patients and recognised their extreme vulnerability. They identified a range of challenges and unmet needs experienced by people with schizophrenia at the end of life including: illness factors such as the impact of schizophrenia on information processing and communication; social factors such as stigma, isolation and the absence of a carer; and health care factors such as late diagnosis, delayed access to care, and mismanagement in care. Four themes were organised into two domains with the first exploring the individual and social circumstances of people with schizophrenia, including the challenges they experience in the health care system. The second domain covers themes that discuss barriers and facilitators to people with schizophrenia receiving palliative care and key features in palliative care provision, including recognising declining health, communication and planning, and collaboration and capacity building in the broader health, mental health and palliative care sectors.ConclusionsTo ensure people with schizophrenia are well supported at the end of life a model of palliative care is required that offers both specialised services and capacity building within the pre-existing health workforce. Resources are needed to address the stigma and lack of services faced by this vulnerable group.
BackgroundPostpartum women’s recovery from birth can be assisted through increased physical activity (PA). However, women face substantial barriers to participating in exercise and require support to enable them to benefit from increased PA.MethodsThis study sought to explore women’s beliefs about and experiences of PA and exercise during the 6 weeks to 12 months postpartum period. A cohort of 14 postpartum women from a survey study of the barriers and enablers to exercise participation agreed to take part in interview sessions to provide an in-depth understanding of the women’s perceptions of the postpartum period and their physical activity during this time.ResultsFindings are presented with reference to the social ecological framework and indicate postpartum women face substantial personal and environmental barriers to PA and exercise participation: fatigue, a lack of motivation and confidence, substantial time constraints, lack of access to affordable and appropriate activities and poor access to public transport. In contrast, enablers such as possessing greater social support, in particular partner support, improved PA and exercise participation.ConclusionsThe findings encourage facilitation of exercise through mothers’ groups, mothers’ exercise clubs or postnatal classes suggesting behavioral and social change is needed. Interaction between individuals, community, organizations and policy makers is required. In addition, the provision of specifically tailored and appropriate exercise programs could potentially enable increased PA in postpartum women, thereby improving their health.Electronic supplementary materialThe online version of this article (doi:10.1186/s12884-016-0908-x) contains supplementary material, which is available to authorized users.
Objectives: To describe hospital and emergency department use in the last year of life by people for whom death from cancer or one of another nine conditions was an expected outcome. Design, participants and setting: Retrospective cross‐sectional study based on death registrations and morbidity data for 1071 Western Australians who died between 1 August 2005 and 30 June 2006. Decedents had an informal primary carer, did not live in residential aged care and died of a condition amenable to palliative care. Main outcome measures: Total number of hospital admissions; emergency presentations (with and without hospital admission); days spent in hospital by age group at death, sex, metropolitan or rural place of residence and cancer versus non‐cancer diagnosis; proportion in hospital on any day in the last 365 days of life; time points of change in the last 365 days of life at which there was an increasing proportion of hospital admissions for those with cancer and non‐cancer conditions. Results: All but 4% of the decedents spent time in hospital with a marked increase in hospitalisations in the last 108 days of life for people who died of cancer and the last 83 days of life for people who died of non‐cancer conditions. Those with cancer spent less time in hospital than those with other diagnoses. Seventy per cent of the cohort had at least one emergency presentation. On the last day of life, 61.5% of people were in hospital and 4.0% had been seen in emergency departments. Conclusions: Western Australian hospitals currently provide extensive and progressively greater care at the end of life. Identifying patterns of emergency and inpatient use for various disease trajectories will assist in the planning of appropriate services for people where death is an expected outcome.
Unlike traditional palliative care estimates that focus on malignant disease, this study included nonmalignant conditions in a set of three estimates of a potential palliative care population. By using population-based data to describe characteristics of people who compose palliative care populations, these results offer a tool for planning equitable healthcare services.
Within a WA context, this study confirms established international evidence for problems of access to SPC by non-cancer patients and other disadvantaged groups. Importantly, this evidence is provided at a population level, thus documenting the extent of inequities in palliative care service provision. By pointing to the areas of most critical need, this study assists in health service policy and planning.
BackgroundHistorically, specialist palliative care has been accessed by a greater proportion of people dying with cancer compared to people with other life-limiting conditions. More recently, a variety of measures to improve access to palliative care for people dying from non-cancer conditions have been implemented. There are few rigorous population-based studies that document changes in palliative care service delivery relative to the number of patients who could benefit from such services.MethodA retrospective cohort study of the last year of life of persons with an underlying cause of death in 2009–10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer’s disease, motor neurone disease, Parkinson’s disease, Huntington’s disease and/or HIV/AIDS. The proportion of decedents receiving specialist palliative care was compared to a 2000–02 cohort. Logistic regression models were used identify social and demographic factors associated with accessing specialist palliative care.ResultsThere were 12,817 deaths included into the cohort; 7166 (56 %) from cancer, 527 (4 %) from both cancer and non-cancer conditions and 5124 (40 %) from non-cancer conditions. Overall, 46.3 % of decedents received community and/or hospital based specialist palliative care; a 3.5 % (95 % CI 2.3–4.7) increase on specialist palliative care access reported ten years earlier. The majority (69 %; n = 4928) of decedents with cancer accessed palliative care during the last year of life. Only 14 % (n = 729) of decedents with non-cancer conditions accessed specialist palliative care, however, this represented a 6.1 % (95 % CI 4.9–7.3) increase on the specialist palliative care access reported for the same decedent group ten years earlier. Compared to decedents with heart failure, increased odds of palliative care access was observed for decedents with cancer (OR 10.5; 95 % CI 9.1–12.2), renal failure (OR 1.5; 95 % CI 1.3–1.9), liver failure (OR 2.3; 95 % CI 1.7–3.3) or motor neurone disease (OR 4.5; 95 % CI 3.1–6.6). Living in major cities, being female, having a partner and living in a private residence was associated with increased odds of access to specialist palliative care.ConclusionThere is small but significant increase in access to specialist palliative care services in Western Australia, specifically in patients dying with non-cancer conditions.Electronic supplementary materialThe online version of this article (doi:10.1186/s12904-016-0119-2) contains supplementary material, which is available to authorized users.
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