Examining public knowledge, attitudes and perceptions towards palliative care: a mixed method sequential study.

BACKGROUND: Palliative care is recognised as a public health issue with the need for earlier integration in the wider healthcare system. However, research indicates that it continues to be accessed late in the course of an illness, public understanding of palliative care is limited, and common misconceptions prevail. Strategies to address this are needed in order to reduce barriers to palliative care delivery and improve access. METHODS: An explanatory sequential mixed methods study, comprising a cross-sectional survey and interviews was undertaken. Sociodemographic characteristics, public awareness, knowledge and perceptions of palliative care were examined and strategies to raise awareness and overcome barriers within a public health framework were identified. Survey data were analysed using SPSS v25 with factor analysis and non-parametric statistics and qualitative data were analysed using thematic analysis. RESULTS: A total of 1201 participants completed the survey (58.3% female, mean age 61 years) and 25 took part in interviews. A fifth of participants (20.1%) had previously heard about palliative care and had an accurate understanding of the term. Being female, higher educated, married, and older, increased respondents' levels of awareness. The three most commonly held misconceptions included: Palliative care is exclusively for people who are in the last 6 months of life (55.4% answered incorrectly); A goal of palliative care is to address any psychological issues brought up by serious illness (42.2% answered incorrectly); and a goal of palliative care is to improve a person's ability to participate in daily activities (39.6% answered incorrectly). Talking about palliative and end of life care was advocated but societal taboos restricted this occurring with exposure limited to personal experience. CONCLUSIONS: Current knowledge gaps and misconceptions derived from limited ad hoc personal experiences and fear of engaging in taboo conversations may deter people from accessing integrated palliative care services early in a disease trajectory. The results indicate the need for public education programmes that move beyond merely raising awareness but provide key messages within a public health approach, which may change attitudes to palliative care thus ultimately improving end of life outcomes.

The role of hospice in the transition from hospital to home for technology-dependent children-A qualitative study.

AIMS AND OBJECTIVES: To report parent and professional perspectives of step-down care in assisting the transition from hospital to home, within one children's hospice in a constituent country of the United Kingdom. BACKGROUND: In recent years, increasing numbers of children-dependent on long term assisted ventilation have been noted. Meeting the complex physical, emotional and social needs of the child and family is challenging. Many of these children spend extended periods in hospital even when medically stable. DESIGN: This was a qualitative study using an inductive, semantic analytic approach within a realist epistemology. METHODS: Data collection was carried out in 2013. Interviews took place with parents (n = 5) and focus groups with professionals (n = 26) who had experience of step-down care. RESULTS: Multiple benefits of step-down in the hospice were clear. Both sets of accounts suggested that for children and families life was "on hold" in hospital. Hospice was considered a home-like environment where the child and family could "live again". Parents reflected that, in hospice they were "living, not existing" while professionals highlighted hospice as nurturing and empowering the whole family, promoting the child's development while safely meeting their clinical needs. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The study highlights a number of crucial benefits to the child and family both in the immediate and longer terms. The collective perspectives therefore endorse hospice as a potential viable choice for these children and their families during the always difficult, usually protracted transition from hospital to home.

Reflecting on palliative care for children, young people and their families: a revised model.

The unique needs of children requiring palliative care and their families have been increasingly recognised on a global scale. The complexities of such care, the unpredictability of the illness trajectory and increased choice in terms of where care is provided has led to challenges for nurses/practitioners striving to provide optimal care for these families. Working in partnership with children and families and reflecting on practice are key issues in providing care and support. Reflective models are frequently used as a tool for two reasons: firstly, to reflect on practice with the aim of quality improvement; secondly, to help practitioners explore difficult or challenging aspects of care negotiated with families. Here, the authors report on a specialised model that has been developed and updated for use within children's palliative care. For reasons of confidentiality, a fictitious case study is used to illustrate how this model could be implemented during a debriefing session following the death of a child. While more research is needed, initial trials of the model by the authors suggests that using specialised reflective models and frameworks can help to facilitate such discussions in children's palliative care.

How much compassion have I left? An exploration of occupational stress among children's palliative care nurses.

Nursing is a stressful occupation. While children's palliative care nurses encounter many of the stressors in common with other nurses, this unique context of care generates specific aspects of stress that warrant further examination. This qualitative study explores the experiences of stress in nurses providing children's palliative care in one region of the UK. In total, four focus groups took place with children's hospice nurses, community children's nurses and children's nurse specialists based in the regional children's hospital. The focus groups were taped, transcribed and analysed through the application of Newell and Burnard's thematic content analysis methodology. Four core themes emerged: work demands; relationships, maintaining control, and support and roles. Of particular note were stressors associated with the sub-themes of relationships, emotional demands and ethical conflicts. Conclusions illustrating how individuals and organizations may reduce the impact of stress in nurses contributing to the palliative care of children and their families are made.

The use of syringe drivers: a paediatric perspective.

Successful symptom management in the palliative and terminal care of patients frequently involves the use of syringe drivers. A wealth of literature exists to support their use in the care of adult patients both within specialist palliative care inpatient units and in the community setting. However, little has been written regarding their use in the paediatric population. The purpose of this article is to examine specific issues concerning the use of syringe drivers when caring for children and young people in the terminal phase of illness.