The provision of supportive and palliative care for an indigenous people in Nova Scotia, Canada, was examined to further our understanding and thereby improve cultural competency. Most of Nova Scotia's indigenous people are Mi'kmaq. The Mi'kmaq Nation lives in Atlantic Canada as well as New England in the eastern USA.
Themes were identified in the literature and through discussion with seven experts who have Mi'kmaq health and cultural research expertise. This paper has been reviewed and approved by two Mi'kmaq consultants who frequently speak on behalf of the Mi'kmaq people in relation to health and cultural understanding. Recommendations for non-indigenous care providers are presented.
The themes identified focused on jurisdictional issues and cultural understanding. They are interconnected and grounded in the historic Mi'kmaq context of colonialism. Jurisdictional issues experienced by the Mi'kmaq affect access, continuity and appropriateness of care. Cultural concepts were associated with worldview, spirituality, the role of family and community relationships and communication norms, and thereby with the alignment of values and language in the provision of care. Three Mi'kmaq concepts are noted: apiksiktatulti, nemu'ltus and salite.
Through reflection on the situation of Nova Scotia's Mi'kmaq, non-indigenous healthcare providers can assess how they might increase their cultural understanding in the provision of supportive and palliative care. Recommendations relate to the health system, relationships with individual persons and direction for research.
People with dementia and their carers may experience poor end of life care, often having to navigate complex health and social care systems. The objectives of this study were to identify: (1) barriers for people with dementia and their carers in accessing good quality end of life care and (2) cost-effective ways of enabling improvements.
Rapid participatory appraisal gains information from different sources across a single locality. Participants were carers of people who had died of dementia, health and social care staff. Care pathways were modelled. Barriers identified from qualitative work were triangulated with detailed case audit and economic analysis. Results were presented to the stakeholder group who generated feasible solutions.
Nine cases were audited (predominantly white British male subjects, 64–84 years with advanced dementia). Six resided at home, one in a care home and two in continuing care wards. Five died in their place of residence and four in the acute hospital. Care costs over the 6 months before death were higher in care homes or continuing care (£37 029) than for those living at home (£19 854). Synthesis of qualitative and quantitative data generated areas for improvement: patient pathway, impact of acute hospitalisation, economic costs, advance care planning, impact on carers, skills and training of health and social care staff.
This method provided evidence for stimulating change in the health and social care system. Following the patient journey and identifying barriers to care allowed local context to be considered. Service providers generated solutions enabling ‘ownership’ of changes to service delivery.
The Palliative Performance Scale (PPS) was introduced across NHS Grampian. Our aim was to determine how practical and useful the PPS was for clinicians looking after palliative patients in a variety of settings.
A prospective audit approach was used in primary, secondary and nursing home care settings who. Demographic and assessment data were gathered for 3 months; feedback was gathered at the end of the data collection phase. Patient follow-up status was determined at 12 months.
Fifteen clinical sites participated and feedback was obtained from all clinical areas (n=30). Most respondents found the PPS easy to use and that it helped recognise disease progression in cancer patients, but not in patients with dementia/frailty. Assessment data were gathered on 666 patients. Sixty per cent had a malignant diagnosis and 62.5% of the sample died within 12 months. Lower PPS scores at initial assessment indicated poorer prognosis. Median survival figures differed from previously published data. Falling PPS scores increased the risk of death compared with patients whose PPS scores remained static or improved.
Clinicians found the PPS to be a quick, useful way of assessing and reviewing functional changes in palliative patients. However, it may not identify the subtle changes in individuals with advanced dementia. The survival figures confirm that caution is needed in generalising survival data across different settings and populations. Further work is needed to examine changing functional status in patients with non-malignant diseases or dementia/frailty.
To examine the experiences of bereaved parents concerning the care provided to children who died from cancer compared to those who died from a non-malignant condition.
An in-depth qualitative study with bereaved parents of children who died as a result of a life-limiting diagnosis, recruited through two regional centres.
Although parents' accounts displayed commonalities, key differences were discernible. Typically, parents of children with cancer considered care at the end of life as well resourced and responsive to their and their child's needs. In contrast, parents of children with non-malignant conditions reported under-resourced and inadequately responsive services. Although both groups of parents called extensively on military metaphors such as ‘battle’, ‘fight’ and ‘struggle’, the focus of their respective energies was different. In the one case the adversary was disease and illness; in the other it was service providers and service provision.
Community-based services for children and young people with cancer at the end of life were perceived by parents as responsive to parent and child needs. Conversely, community services for children and young people with non-malignant conditions were experienced as ad hoc and under-resourced. Community services for children with non-malignant conditions may require further development if they are to meet the levels of support offered to parents of children with cancer. If improvement is to be achieved, the need to raise awareness regarding hospice services, hospice referral and eligibility criteria across the entire gamut of service providers is essential.
Many family caregivers of palliative care patients experience poor health and have other unmet needs, requiring health professionals' support. However, there are few evidence-based supportive interventions to address these issues.
The purpose of this project was to undertake preliminary testing of a psychoeducational group education programme, delivered in an in-patient setting, designed to prepare family caregivers for the role of supporting a relative currently receiving hospital-based palliative care.
A pilot phase was conducted to develop the intervention and explore its utility. Thereafter the single session intervention was delivered in five palliative care units in three states of Australia and its effectiveness was examined using a pre–post design. Outcome variables included caregiver preparedness, competence and unmet needs. Psychological wellbeing was measured in order to determine if there were any deleterious psychological outcomes.
One hundred and twenty-six participants completed Time 1 data and 107 (84.9%) completed Time 2 data (post-intervention). There were statistically significant improvements in caregivers' sense of preparedness (p=<.001; effect size (ES) 0.43) and a significant reduction in unmet caregiver needs (p=014; ES 0.22). There was no significant effect on psychological wellbeing and the improvement on competence fell short of statistical significance.
This study reinforces the notion that psychoeducational interventions for this population can potentially be applicable, acceptable and effective. However, the number of participants who were recruited and attended each session was fewer than anticipated, resulting in methodological implications. It is recommended that the intervention undergo further empirical inquiry, such as via a controlled trial.
Most terminally ill patients and relatives prefer care and death to occur at home. However, in many cases patients die in hospital and the question arises whether social inequity in palliative care exists. The aim of this study was to analyse associations between dying at home and demographic and socioeconomic characteristics adjusted for healthcare utilisation among Danish cancer patients.
Population-based, cross-sectional register study in Aarhus County, Denmark. 599 deceased adults who died from cancer from 1 March to 30 November 2006 in a well-defined geographical area were identified. Based on unique personal identifier numbers, socioeconomic data and healthcare utilisation from different registers were retrieved and analysed.
Multivariate analysis showed that dying at home was negatively associated with, first, being either 50–59 (prevalence ratio (PR): 0.67 (95% CI 0.45 to 0.99)) or 70–79 years of age (PR: 0.83 (95% CI 0.70 to 0.99)) compared with being 80 years or above; second, a middle personal income compared with a high income (PR: 0.86 (95% CI 0.75 to 1.00)); and, third, being employed or having a leadership position compared with being unemployed/student/receiving social security (PR: 0.72 (95% CI 0.53 to 0.98)).
The found socioeconomic differences in whether death occurred at home or at institutions indicate that age, income and social class must be taken into account when palliative care services engage in fulfilling preferences of dying at home. This may lead to more equality in the possibility of dying at home, despite differences in socioeconomic level.
People with dementia may experience poor quality end-of-life care. The complex health and social care system may not meet their needs. The authors' objectives were to identify perceived and real barriers that prevent people with dementia and their carers receiving end-of-life care of acceptable quality.
A whole-system qualitative study as part of a rapid participatory appraisal. The authors used semistructured interviews and focus groups with recently bereaved family carers of a person with dementia and a wide range of health and social care staff (50 participants). Thematic content analysis was used to analyse data and to identify barriers.
Five areas were identified as barriers to providing good end-of-life care: impact of hospitalisation, care pathways, advance care planning, impact on carers, staff skills and training. A wide range of health and social professionals provided end-of-life care to people with dementia but with little coordination or knowledge of each other's activity or remit. Care was fragmented and ad hoc leading to crises and inappropriate hospital admissions. Staff lacked confidence and requested more training. Many of the identified barriers were underpinned by feelings of uncertainty regarding disease trajectory and the perceived futility of interventions. Areas of good practice were specialist nurse support to family carers and ‘in reach’ to nursing homes.
Qualitative methods of service evaluation facilitated a broader and deeper understanding of a range of perspectives, which, with other components of rapid participatory appraisal, generated potential solutions to improve care.