Evaluating a partnership model of hospice enabled dementia care: A three-phased monitoring, focus group and interview study.

BACKGROUND: People with dementia and their caregivers often lack equitable access to hospice care which is a concern internationally. Domains of best practice in palliative care for this population exist and hospices are urged to become dementia friendly. AIM: This study aimed to evaluate the model of 'Hospice Enabled Dementia Partnership' mapped to international domains of best practice. DESIGN: Three-phased monitoring, group interview and individual interview study using a formative evaluation framework. SETTINGPARTICIPANTS: The partnership model was a collaboration between a large specialist palliative care hospice, a dementia charity and a Health Care Trust in the United Kingdom. Service documents were subjected to documentary review of monitoring activity and key indicators of service success. Group interviews and individual interviews took place with family carers (n = 12), health care professionals involved in delivering the service (n = 32) and senior professionals (n = 5) responsible for service commissioning in palliative or dementia care. RESULTS: One hundred people with dementia were referred to the service between May 2016 and December 2017. Thirty-eight of the 42 people who died, achieved their preferred place of care and died at home. Four themes were derived from the data 'Impact of Dementia', 'Value of the Service', 'Information and Learning Needs' and 'Working in Partnership'. CONCLUSIONS: Positive outcomes resulted from this best practice model; achievement of preferred place of care and death at home, dual benefits of therapies for patients and families and partnership in cross working and learning between services. Replication of this model should be considered internationally.

Exploring public awareness and perceptions of palliative care: a qualitative study.

BACKGROUND: Research suggests that the public appear to be confused about the meaning of palliative care. Given the ageing population and associated increase in the number of patients requiring palliative care, it is vital to explore the public's understanding of this concept. Health-promoting palliative care seeks to translate hospice and palliative care ideals into broader public health practice. AIM: To explore public perceptions of palliative care and identify strategies to raise awareness. DESIGN: An exploratory qualitative approach. PARTICIPANTS: Semi-structured telephone interviews were undertaken (N = 50) with members of the public who volunteered to participate in the study. The interviews focused on knowledge and perceptions of palliative care, expectations of palliative care services and the identification of strategies to raise public awareness of palliative care. The interviews were audio recorded and content analysed. RESULTS: Most participants had a general knowledge of palliative care, largely influenced by their own personal experience. They identified that palliative care was about caring for people who were dying and maintaining comfort in the last days of life. Participant's expectations of services included the following: holistic support, symptom management, good communication and practical support to enable choice and carer support. Key aspects identified for promoting palliative care were the development of understanding and use of the term itself and targeted educational strategies. CONCLUSION: Experience of palliative care generates understanding in the general public who also have ideas for increasing knowledge and awareness. The findings can inform policymakers about strategies to raise public awareness of palliative care.

Public awareness and attitudes toward palliative care in Northern Ireland.

BACKGROUND: The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. METHODS: A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. RESULTS: A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. CONCLUSIONS: Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.

A pilot study to evaluate an outpatient service for people with advanced lung cancer.

Many patients with lung cancer are symptomatic from diagnosis, and quality of life (QoL) may be maximised through the use of specialist palliative care in parallel with other treatments. This study explored anxiety, depression, and QoL in five patients, predominantly male (n=4) and with mean age 74 years, using a 'Breathing Space' clinic over a 4-week period. Breathing Space is a nurse-led multidisciplinary outpatient clinic using integrative care with lung cancer patients. The patients received weekly interventions to improve their wellbeing. Qualitative data were collected to explore their expectations and experiences of the clinic, and quantitative data were captured using the Eastern Cooperative Oncology Group Performance Status Rating (ECOG-PSR), the Hospital Anxiety and Depression Scale (HADS), the EQ-VAS, and the EQ-5D. These data were analysed using thematic content analysis and SPSS respectively. It was found that preconceived ideas about clinic attendance were replaced with positive impressions. Anxiety and EQ-VAS scores improved for all patients, and depression scores improved for four of the five patients, although no tests of significance were made. The qualitative data indicated that there were psychosocial benefits to attending the clinic.