Beverley McNamara

Who receives specialist palliative care in Western Australia - and who misses out

Objectives: To describe the characteristics of Western Australian (WA) people who received, and did not receive, specialist palliative care (SPC) during their last 12 months of life. Design: Retrospective cohort study. Setting and participants: People who died between 1 July 2000 and 31 December 2002 in WA, and whose cause of death was from cancer or selected non-cancer conditions. Main outcome measures: Use of SPC in the last 12 months of life. Results: There were 27 971 deaths from all causes in WA over the study period. Two-thirds (68%) of people who died of cancer received SPC, but less than one in ten (8%) who died of selected non-cancer conditions received SPC. Those who died of cancer were significantly less likely to receive SPC if they were single or widowed, aged-/ 85 years or lived in a region other than a major city. Of those who died of selected non-cancer conditions, people other than those who were married were significantly less likely to have accessed SPC. Indigenous people were less likely to have accessed SPC, although this was not statistically significant (OR = 0.70, 95% CI: 0.36-1.34). Conclusions: 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.

Which carers of family members at the end of life need more support from health services and why

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carers health following the death of a family member. Unlike previous survey designs that explore end-of-life concerns, we were able to triangulate interview data from semi-structured telephone interviews (August 2005-June 2006) with a relatively large group of 1071 carers in Western Australia, with administrative records from death registrations, hospital morbidity and community care records from the 1071 deceased family members. The addition of administrative data allowed us to quantify hospital and community care service use. Data analysis consisted of summary statistics and logistic regressions for two groups of carers during the first few months of bereavement: those whose health got a bit/lot worse, and those who were not coping on most/all days. We found that carers were more likely to have poor health if they perceived they did not get enough support from health services and if the deceased family member did not die in the carers preferred place of death. Additionally, carers were more likely to be not coping if they were aged 60 years or less, female, had lost a spouse/partner and the deceased family member did not die in the carers preferred place. By identifying which carers are more vulnerable than others, carer education and practical support can be targeted to specific groups. Ideally resources for bereavement support should be extended into the months following the relatives death.

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.

Palliative care in a multicultural society: perceptions of health care professionals

This study assesses the perceived competence of 191 Australian palliative care professionals in delivering crosscultural care. The relationship between the perceived competence levels of professionals and their experience and training is examined. Strategies to improve crosscultural palliative care, as suggested by palliative care providers, are also presented. Information about perceived competence and the kinds of difficulties encountered in crosscultural palliative care interactions form the basis of suggested guidelines for proposed education programmes. The results of this study suggest that specific education, rather than individual experience of crosscultural interactions, which may not always be positive, is needed to improve the competence of palliative care professionals. Education, therefore, is the key to the provision of culturally appropriate care to patients and their families from all cultural backgrounds.

Early admission to community-based palliative care reduces use of emergency departments in the ninety days before death

BACKGROUND Overcrowded emergency departments (EDs) and the staff within them are often not able to address the complex physical and psychosocial needs of people at the end of life. While some studies have suggested that the ED environment should be adapted and staff trained to address this issue, there are no previous studies which have investigated whether the provision of timely palliative care services could prevent people with palliative care needs from attending EDs. OBJECTIVE This study investigates whether early admission to community-based palliative care reduces ED admissions in the last 90 days of life for patients with cancer. METHODS The study was a retrospective, cross-sectional study using death registrations and hospital morbidity data for 746 Western Australian adults who died of cancer and where palliative care may have been a viable and appropriate option for care. RESULTS In their final 90 days before death, 31.3% of decedents who had early access to palliative care and 52.0% of those who did not have early access to palliative care visited an ED (OR=2.86; 95% CI, 1.91, 4.30). Early admission to community-based palliative care reduces the use of EDs by cancer patients in the 90 days before death. CONCLUSIONS Proactive care in the form of timely community-based palliative care assists in preventing vulnerable people at the end of life from being exposed to the stressful ED environment and decreases the pressure on EDs.

Cancer survivors’ experiences of using survivorship care plans: a systematic review of qualitative studies

PurposeCancer survivorship care plans (SCPs) are currently used in care settings to assist survivors during the transition from treatment to survivorship. In this paper, the experiences of cancer survivors are examined to provide their perspective of how survivorship care plans are used in practice.MethodsA systematic review and critical review of the qualitative literature regarding the experiences of cancer survivors using survivorship care plans was completed. Databases reviewed included CINAHL, AMED, Embase, MEDLINE, Informit, ProQuest, PsycINFO, ScienceDirect, Wiley Online Library, Scopus and Web of Science from 2000 to 2014.ResultsEleven qualitative studies were appraised for methodological quality and content. They revealed four key themes: stakeholders agreed that SCPs should be used as a key strategy for cancer survivors; there was a lack of consensus on the format, content and who should develop the SCP; cancer survivors do not consistently receive SCPs; and there was a lack of evidence to support the use of SCPs in practice.ConclusionsThere is great potential for SCPs to assist cancer survivors and this is supported by the range of qualitative literature examined in this study. Further research is required to examine the many practical issues relating to the delivery of SCPs and how they may be used across a variety of care contexts as well as providing further evidence to support their use.Implications for Cancer SurvivorsWith further research, refinement and contributions made by survivors, health researchers and health care professionals, the survivorship care plan is proposed to be a useful and practical tool aimed at supporting the survivorship continuum of care.

Obstetric profiles of foreign-born women in Western Australia using data linkage, 1998-2006

Background:  Despite Western Australia (WA) having the highest proportion of overseas‐born residents of any Australian state, no previous study has examined the general patterns of obstetric health of foreign‐born women in WA.

Evaluating the potential of group singing to enhance the well‐being of older people

To evaluate the effect of a singing program developed specifically for older community‐dwelling people on measures of health and well‐being.

Community-based palliative care is associated with reduced emergency department use by people with dementia in their last year of life: A retrospective cohort study

Objective: To describe patterns in the use of hospital emergency departments in the last year of life by people who died with dementia and whether this was modified by use of community-based palliative care. Design: Retrospective population-based cohort study of people in their last year of life. Time-to-event analyses were performed using cumulative hazard functions and flexible parametric proportional hazards regression models. Setting/participants: All people living in Western Australia who died with dementia in the 2-year period 1 January 2009 to 31 December 2010 (dementia cohort; N = 5261). A comparative cohort of decedents without dementia who died from other conditions amenable to palliative care (N = 2685). Results: More than 70% of both the dementia and comparative cohorts attended hospital emergency departments in the last year of life. Only 6% of the dementia cohort used community-based palliative care compared to 26% of the comparative cohort. Decedents with dementia who were not receiving community-based palliative care attended hospital emergency departments more frequently than people receiving community-based palliative care. The magnitude of the increased rate of emergency department visits varied over the last year of life from 1.4 (95% confidence interval: 1.1–1.9) times more often in the first 3 months of follow-up to 6.7 (95% confidence interval: 4.7–9.6) times more frequently in the weeks immediately preceding death. Conclusions: Community-based palliative care of people who die with or of dementia is relatively infrequent but associated with significant reductions in hospital emergency department use in the last year of life.

The relationship between postnatal depression, sociodemographic factors, levels of partner support, and levels of physical activity

Background: postnatal depression (PND) is defined as a psychological mood disorder that occurs in a mother within 6 weeks of her giving birth. It refers to an episode that causes mood disturbance and it could begin in, or extend into, the postpartum period. It is thought to have a high impact upon the mothers health as well as the familys functioning and the childs development. Socio-demographic, psych-social, and physical activity factors may all contribute to postpartum mood and ability to cope with responsibilities. The primary aim of this study was to determine which of these factors predicted PND in postpartum women. A secondary aim was to identify the socio-demographic and psycho-social predictors of physical activity in postpartum women. Methods: The study used a cross-sectional correlational design. A sample of 150 postpartum women was sent a package of six standardized questionnaires. Results: There was no association between physical activity and PND; however, older mothers, mothers of younger children, mothers who are less reluctant to ask for help, and mothers who are more satisfied with the help they get experience lower levels of PND. Mothers of older babies, mothers with more children, and less educated mothers are more likely to engage in caregiving activities, whereas mothers with fewer children and higher levels of partner support are more likely to engage in occupational activities. None of the socio-demographic factors or any of the parenting factors predicted levels of sporting activity.