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Background: Empirical studies suggest that gratitude positively influence the quality of life of palliative patients and relatives. However, the literature is marked by a lack of conceptual clarity about what gratitude is and whether it can bring about individual and social benefits. Aim: This paper explores how palliative care patients and relatives understand gratitude, how discursive representations of gratitude may affect their positions, perceptions and relations, and how to conceptualise gratitude in the palliative context. Design: We examine 33 gratitude letters written by patients and relatives and 25 semi-structured interviews conducted as part of a pilot gratitude intervention study. We use a qualitative approach, thematic analysis, within a conceptual framework of discourse analysis. Settings/participants: Data were collected from 23 patients and 13 relatives recruited through three hospital palliative care services in French-speaking Switzerland. Results: Participants articulate gratitude in five ways: (1) appreciating others; (2) love; (3) need to reciprocate; (4) appreciating the little things; (5) solace amid serious illness. While some of these representations are sources of positive emotions and outlook, wellbeing and hope, others may confirm self-perceptions of powerlessness and burden. These results support a tridimensional conceptualisation of gratitude in palliative care as source of individual benefits, valuing closest relationships and moral obligation. Conclusion: Our study suggests that gratitude is a key to a good (end of) life, whilst highlighting potential negative effects. It could help healthcare professionals to better understand what gratitude means to patients and relatives, which may facilitate awareness and fostering of gratitude in palliative care. [ABSTRACT FROM AUTHOR]

Background: Healthcare usage patterns change for people with life limiting illness as death approaches, with increasing use of out-of-hours services. How best to provide care out of hours is unclear. Aim: To evaluate the effectiveness and effect of enhancements to 7-day specialist palliative care services, and to explore a range of perspectives on these enhanced services. Design: An exploratory longitudinal mixed-methods convergent design. This incorporated a quasi-experimental uncontrolled pre-post study using routine data, followed by semi-structured interviews with patients, family carers and health care professionals. Setting/participants: Data were collected within specialist palliative care services across two UK localities between 2018 and 2020. Routine data from 5601 unique individuals were analysed, with post-intervention interview data from patients (n = 19), family carers (n = 23) and health care professionals (n = 33; n = 33 time 1, n = 20 time 2). Results: The mean age of people receiving care was 73 years, predominantly white (90%) and with cancer (42%). There were trends for those in the intervention (enhanced care) period to stay in hospital 0.16 days fewer, but be hospitalised 2.67 more times. Females stayed almost 3.5 more days in the hospital, but were admitted 2.48 fewer times. People with cancer had shorter hospitalisations (4 days fewer), and had two fewer admission episodes. Themes from the qualitative data included responsiveness (of the service); reassurance; relationships; reciprocity (between patients, family carers and staff) and retention (of service staff). Conclusions: Enhanced seven-day services provide high quality integrated palliative care, with positive experiences for patients, carers and staff. [ABSTRACT FROM AUTHOR]

Background: Healthcare assistants working in hospice at home settings have a pivotal role in supporting people dying at home and their family caregivers. Some healthcare assistants are working alone in patients' homes, which magnifies some of the issues reported for those working closely with other team members. There is a dearth of evidence in terms of education, training and support needs for healthcare assistants when working alone. Aim: To explore the role of newly employed lone working healthcare assistants delivering palliative care in the community, and their support and educational needs. Design: Qualitative exploratory study using semi-structured interviews. Setting/participants: Healthcare assistants (n = 16) employed less than 12 months by a national non-profit hospice and palliative care provider located across the UK. Results: Analysis of interviews identified three main themes: (1) Healthcare assistants have a unique and complex role catering for holistic needs of patients and their family caregivers in the home environment; (2) preparation for the complex role requires focus on experiential learning and specific training to support holistic care provision; (3) lone workers experience loneliness and isolation and identify peer support as a key intervention to support their wellbeing. Conclusions: Given the complexities of their role within community palliative care teams, there are key learning points in relation to healthcare assistant preparation. Education and support networks should be prioritised to reduce isolation and support ongoing learning and development of newly employed healthcare assistants; all of which is vital to ensure safety and quality of care for the growing number of people they support in the community. [ABSTRACT FROM AUTHOR]

Background: Cardiac Cachexia is a wasting syndrome that has a significant impact on patient mortality and quality of life world-wide, although it is poorly understood in clinical practice. Aim: Identify the prevalence of cardiac cachexia in patients with advanced New York Heart Association (NYHA) functional class and explore its impact on patients and caregivers. Design: An exploratory cross-sectional study. The sequential approach had two phases, with phase 1 including 200 patients with NYHA III-IV heart failure assessed for characteristics of cardiac cachexia. Phase 2 focussed on semi-structured interviews with eight cachectic patients and five caregivers to ascertain the impact of the syndrome. Setting/participants: Two healthcare trusts within the United Kingdom. Results: Cardiac Cachexia was identified in 30 out of 200 participants, giving a prevalence rate of 15%. People with cachexia had a significantly reduced average weight and anthropometric measures (p < 0.05). Furthermore, individuals with cachexia experienced significantly more fatigue, had greater issues with diet and appetite, reduced physical wellbeing and overall reduced quality of life. C-reactive protein was significantly increased, whilst albumin and red blood cell count were significantly decreased in the cachectic group (p < 0.05). From qualitative data, four key themes were identified: (1) 'Changed relationship with food and eating', (2) 'Not me in the mirror', (3) 'Lack of understanding regarding cachexia' and (4) 'Uncertainty regarding the future'. Conclusions: Cardiac cachexia has a debilitating effect on patients and caregivers. Future work should focus on establishing a specific definition and clinical pathway to enhance patient and caregiver support. [ABSTRACT FROM AUTHOR]

Background: There is growing recognition of the importance of involving patients and families with lived experiences of illness in healthcare service quality improvement, research and implementation initiatives. Ensuring input from people with palliative care needs is important, but how to enable this is not well understood. Aim: To seek the perspectives of Australian patients with palliative care needs, and their family members, to elicit their views on how to best contribute to inpatient palliative care quality improvement initiatives. Design: An exploratory qualitative study, using semi-structured interviews. Setting/participants: Eligible participants were adult patients with palliative care needs receiving care within a hospital setting, and their family members. Recruitment occurred through: five hospitals in New South Wales, Australia; and snowballing. Results: Fifty participants took part (21 patients and 29 family members). Results confirmed four themes: (1) Mechanisms for providing feedback about care quality need to be supportive and individualised; (2) The clinician-patient/family power imbalance makes real time feedback challenging to provide; (3) Willingness to contribute varies according to diagnosis, timing and role and (4) Face to face feedback is preferred for health service improvement work. Conclusions: Enabling meaningful consumer input to quality improvement requires careful consideration due to the unique requirements of the palliative care population. Embedding tailored outcome and experience measures to inform real-time care provision coupled with focussed opportunities for input into service improvement may best foster improvements in inpatient palliative care, founded in what matters most for people requiring this care. [ABSTRACT FROM AUTHOR]

Background: Families and professionals caring for children with life-limiting conditions face difficult healthcare decisions. Shared decision-making is promoted in many countries, however little is known about factors influencing these processes. Aim: To explore the communication strategies used in shared decision-making for children with life-limiting conditions. Design: A longitudinal, qualitative, multiple-case study. Cases were centred around the child and parent/carer(s). Most cases also included professionals or extended family members. Data from interviews, observations and medical notes were re-storied for each case into a narrative case summary. These were subject to comparative thematic analysis using NVivo11. Setting/participants: Eleven cases recruited from three tertiary hospitals in England. 23 participants were interviewed (46 interviews). Cases were followed for up to 12 months between December 2015 and January 2017. 72 observations were conducted and the medical notes of nine children reviewed. Findings: Strategies present during shared decision-making were underpinned by moral work. Professionals presented options they believed were in the child's best interests, emphasising their preference. Options were often presented in advance of being necessary to prevent harm, therefore professionals permitted delay to treatment. Persuasion was utilised over time when professionals felt the treatment was becoming more urgent and when families felt it would not promote the child's psychosocial wellbeing. Conclusions: Communication strategies in shared decision-making are underpinned by moral work. Professionals should be aware of the models of shared decision-making which include such communication strategies. Open discussions regarding individuals' moral reasoning may assist the process of shared decision-making. [ABSTRACT FROM AUTHOR]