Conceptualizing Self-Harm through the Experiences of Psychogeriatric Experts.

INTRODUCTION: Fewer studies thus far have focused on self-harm and its specific forms among older adults. Moreover, the limited available literature applies varying terminology. The categorization of self-harm used in younger populations may not be as appropriate for this population. This means that less is known about this phenomenon in older adults. The current study aimed to reduce this gap. METHODS: Nine Flemish psychogeriatric experts participated in a semi-structured interview. Transcripts were thematically analyzed. RESULTS: Themes emerging from the interviews suggest that self-harm in older adults may also include distinct elements, such as the omission of certain behaviours and engagement in indirect self-harm to cause bodily harm. According to the experts, self-harm may be engaged in to cope with emotions, express life fatigue, hasten death, and communicate a cry for help. DISCUSSION: Self-harm is prevalent in older adults, and some characteristics may be specific to self-harm in an older age group. These findings may enable clinicians to be more alert to self-harm in older adults and consequently prevent serious suicidal behaviour. More research is needed to further uncover this phenomenon.

A compassionate university for serious illness, death, and bereavement: Qualitative study of student and staff experiences and support needs.

Serious illness, death, and bereavement are common experiences within the work and study context. This study aims to explore the experiences and support needs of university students and staff confronted with serious illness, death, and bereavement. Semi-structured interviews and focus groups were conducted with 21 students and 26 staff. A thematic analysis resulted in three overarching themes: the university as a high-pressure environment; navigating the complex university information and support system; and disenfranchized grief. Four themes were identified in terms of what participants needed from the university: clear processes and procedures; flexibility in policy application; proactive support and recognition; and activities to enhance awareness and interpersonal communication skills. Findings from this study could enable higher education institutions to become more compassionate schools and workplaces.

Family carers' experiences regarding patient transfers between care settings in palliative care: an interview study.

BACKGROUND: To understand how family carers experienced the illness trajectory of their next of kin related to transfers taken place between care settings in palliative care, their experiences and attitude regarding the transfer decision and their experiences regarding patient transfers across settings. METHODS: Semi-structured interviews were held with 21 family carers. A constant comparative approach was used to analyze data. RESULTS: Three themes were identified after data analysis: (I) patient transfer dynamics, (II) experiences regarding the changed care environment and (III) impact of the transfer on the family carer. The dynamics of the patient's transfer were affected by the balance between the care provision (professional and informal care) and the changes in the patient's needs. Experiences regarding patient transfers strongly varied depending on the setting and were based on the personnel's conduct and the quality of receiving information. Study results revealed shortcomings in perceived inter-professional communication and continuity of information during a patient's hospitalization. Concomitant feelings of relief, anxiety or feeling insecure could arise in situations of a patient's transfer. CONCLUSIONS: This study highlighted the adaptability of family carers when caring for their next of kin with palliative care needs. To support carers in coping with their role as caregivers and to share the responsibility of caregiving, involved healthcare professionals should timely evaluate family carers' preferences and needs and adapt the care organization accordingly. A pro-active attitude, which anticipates on the possibility of an impending decompensation of the family carer, is recommended. When the decision for a patient's transfer is taken, multiple factors influenced the choice of the care setting. Healthcare professionals need to take these factors into account when discussing, with patients and carers, the need for a transfer. Continuity of information can be improved. Further development and evaluation of interventions, aimed at improving informational continuity can be recommended.

Researching Compassionate Communities: Identifying theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives.

BACKGROUND: Compassionate Communities have been put forward as a new model for community-based palliative care to positively impact the health and wellbeing of those experiencing challenges of serious illness, death, dying, and loss. Despite the growing international movement to develop these public health initiatives to end-of-life care, only a handful of initiatives have undergone some form of evaluation. AIM: To provide guidance on designing evaluation research by identifying theoretical frameworks to understand the development, implementation, and underlying mechanisms of Compassionate Communities. METHODS: To identify suitable theoretical frameworks for the study of Compassionate Communities, we applied two steps. The first step examined the characteristics of Compassionate Communities and translated them into assessment criteria for the selection of theoretical frameworks. The second step consisted of applying the identified assessment criteria to a list of widely used and highly cited theoretical frameworks. RESULTS: Three well-established theoretical frameworks were identified as being most suitable to study the development, implementation, and underlying mechanisms of Compassionate Communities: The Consolidated Framework for Implementation Research (CFIR), the integrated-Promoting Action on Research Implementation in Health Services framework (i-PARIHS), and the Extended Normalization Process Theory (ENPT). CONCLUSIONS: The article supports and encourages the use of theoretical frameworks to evaluate the complex processes behind public health palliative care initiatives. The complementary use of two determinant frameworks and an implementation theory provides theoretical grounding to gain rich insights into the emergent and shifting interplays between agency, social processes, and contextual factors that shape the development and implementation of Compassionate Communities.

Understanding the role and deployment of volunteers within specialist palliative care services and organisations as they have adjusted to the COVID-19 pandemic: A multi-national EAPC volunteer taskforce survey.

BACKGROUND: Early indications were of a major decline in specialist palliative care volunteer numbers during COVID-19. It is important that ongoing deployment and role of volunteers is understood, given the dependence of many palliative care services on volunteers for quality care provision. AIM: To understand the roles and deployment of volunteers in specialist palliative care services as they have adjusted to the impact of COVID-19. DESIGN: Observational multi-national study, using a cross-sectional online survey with closed and free-text option questions. Disseminated via social media, palliative care networks and key collaborators from May to July 2021. SETTING/PARTICIPANTS: Any specialist palliative care setting in any country, including hospices, day hospices, hospital based or community teams. The person responsible for managing the deployment of volunteers was invited to complete the survey. RESULTS: Valid responses were received from 304 organisations (35 countries, 80.3% Europe). Most cared for adults only (60.9%), provided in-patient care (62.2%) and were non-profit (62.5%). 47.0% had cared for people with COVID-19. 47.7% changed the way they deployed volunteers; the mean number of active volunteers dropped from 203 per organisation to 33, and 70.7% reported a decrease in volunteers in direct patient/family facing roles. There was a shift to younger volunteers. 50.6% said this drop impacted care provision, increasing staff workload and pressure, decreasing patient support, and increasing patient isolation and loneliness. CONCLUSION: The sustained reduction in volunteer deployment has impacted the provision of specialist palliative care. Urgent consideration must be given to the future of volunteering including virtual modes of delivery, micro-volunteering, and appealing to a younger demographic.

Researching Compassionate Communities From an Interdisciplinary Perspective: The Case of the Compassionate Communities Center of Expertise.

Compassionate Communities are places and environments in which people, networks, and institutions actively work together and are empowered to improve the circumstances, health, and well-being of those facing serious illness, death, dying, and loss. The study of their development, implementation, and evaluation requires an interdisciplinary research approach that has hitherto been lacking. In 2020, 8 research groups from 4 faculties at Vrije Universiteit Brussel united in the interdisciplinary Compassionate Communities Center of Expertise (COCO) to investigate Compassionate Communities. This article describes the first results of COCO: (a) an interdisciplinary mode of collaboration, (b) a shared conceptual understanding and definition of Compassionate Communities, and (c) a shared research agenda on Compassionate Communities.

Volunteers in palliative care: A healthcare system-wide cross-sectional survey.

OBJECTIVE: Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers' actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environments for volunteering in PC. This study aimed to describe organised volunteering practices in PC across dedicated PC services and healthcare services providing generalist PC, in terms of tasks, training, supervision and how volunteers evaluate these. METHODS: A cross-sectional postal survey of 2273 volunteers from healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium) was conducted between June and November 2018. A two-step cluster randomised sample was used. Volunteers were recruited through their respective volunteering organisations. RESULTS: Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (70.8%) and aged 60-69 years (43.4%). Almost all volunteers provided psychosocial care (96.3%). Volunteers were found to provide either (1) broad volunteer support, emphasising psychosocial and existential care and signposting tasks or (2) narrow volunteer support, emphasising nursing care tasks. Nursing home volunteers had the lowest prevalence of PC training (7.7% vs 53.7% total, p<0.001). CONCLUSIONS: Multidimensional support was most prevalent among dedicated PC volunteers, while practical support was most prevalent among sitting service volunteers. Results indicate that volunteers can offer complementary support for patients with serious illnesses, although this requires training and consistent supervision. This is currently suboptimal for volunteers in nursing homes and community home care.

The liminal space palliative care volunteers occupy and their roles within it: a qualitative study.

OBJECTIVES: Volunteers have an important place in palliative care (PC), positively influencing quality of care for seriously ill people and those close to them and providing a link to the community. However, it is not well understood where volunteers fit into PC provision or how to support them adequately. We therefore chose to describe volunteer roles across care settings through the perspective of those closely involved in the care of terminally ill people. METHODS: A qualitative study was conducted using both focus groups with volunteers, nurses, psychologists and family physicians and individual semistructured interviews with patients and family caregivers. Participants were recruited from hospital, home, day care and live-in services. RESULTS: 79 people participated in the study. Two volunteer roles were identified. The first was 'being there' for the dying person. Volunteers represent a more approachable face of care, focused on psychological, social and existential care and building relationships. The second was the 'liaison' role. Volunteers occupy a liminal space between the professional and the family domain, through which they notice and communicate patient needs missed by other caregivers. Patient-volunteer matching was a facilitator for role performance; barriers were lack of communication opportunities with professional caregivers and lack of volunteer coordination. CONCLUSION: Volunteers complement professional caregivers by (1) occupying a unique space between professionals, family and patients and fulfilling a liaison function and (2) being a unique face of care for patients. Healthcare services and policy can support volunteer role performance by ensuring frequent communication opportunities and volunteer coordination.

The involvement of volunteers in palliative care and their collaboration with healthcare professionals: A cross-sectional volunteer survey across the Flemish healthcare system (Belgium).

Volunteers occupy a specific space in the delivery of palliative care (PC), addressing specific aspects of care and providing a link between professional healthcare providers and informal care. Engaging and empowering these volunteers can be an important strategy to deliver more integrated and comprehensive PC. Insights into current actual volunteer involvement and collaboration across different healthcare services providing generalist and specialist PC is lacking. This study aims to describe volunteers' involvement in the organisation of PC, collaboration with professionals and how they evaluate this. A cross-sectional postal survey of volunteers was conducted between June and November 2018 using a written questionnaire. A two-step disproportionately stratified cluster randomised sample of 2,273 registered volunteers was taken from different strata of healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium). Overall response was 35% (15%-60% for individual strata). About 67% of volunteers were often to always informed about the organisation of patient care and 48% felt the organisation often to always takes their opinion into account, while a minority report having decision rights (18%) or autonomy (24%). For some, their organisation failed to inform (17%), consult (27%), take into account their opinion (21%), give them decision rights (20%) or autonomy (16%) over certain aspects of patient care provision often enough. Overall, volunteer-professional collaboration was low, and mostly limited to information sharing. Dedicated PC volunteers collaborated extensively with nurses, often involving task coordination (46%). Ambiguity regarding tasks, agreements and/or rules (15%) and lack of information exchange (14%) were the most cited barriers to volunteer-professional collaboration. Many volunteers were open to stronger involvement in the organisation of care in PC services. Collaboration with professionals seemed lacking in width and depth. Particularly, nursing home volunteers indicated a desire and large potential for more involved and collaborative roles in PC provision.

Perspectives on Volunteer-Professional Collaboration in Palliative Care: A Qualitative Study Among Volunteers, Patients, Family Carers, and Health Care Professionals.

CONTEXT: Governments intend to meet resource constraints in professional palliative care by stimulating informal care, including volunteerism. However, little is known about current volunteer-professional collaboration. Such insights are relevant for future policy development regarding volunteer efficiency, quality of care, and the capacity of volunteer care to support health care services and professionals. OBJECTIVES: To explore what constitutes volunteer-professional collaboration around palliative care. METHODS: A qualitative study was conducted using semistructured focus groups with volunteers, nurses, psychologists, and family physicians and semistructured interviews with people with serious illnesses and with family carers. Participants were recruited from hospital, home-care, day-care, and live-in services in Flanders, Belgium. Interviews and focus groups were audio-recorded, transcribed verbatim, and analyzed by using a phenomenological approach. Two researchers coded independently in NVIVO 11 and reached a definitive coding scheme by comparing their resulting conceptual schemes. RESULTS: Seventy-nine people participated in the study. Volunteers collaborate mostly with nurses, less with psychologists but not with physicians. Volunteer-professional collaboration entails mutual information-sharing regarding patient conditions and coordination of care provision, whereas nurses and psychologists provide emotional and functional support for volunteers. Lack of access to nurses, of leadership, and of patient-information-sharing guidelines were the most prominent barriers to collaboration. CONCLUSION: Volunteers are at the front line of palliative care provision and therefore collaborate intensely with nurses, particularly in dedicated palliative care services. However, collaboration with other professionals is limited. The presence and availability of nurses was found to be crucial for volunteers, both for support and to achieve integration through collaboration.

Volunteer involvement in the organisation of palliative care: A survey study of the healthcare system in Flanders and Dutch-speaking Brussels, Belgium.

Ageing populations increasingly face chronic and terminal illnesses, emphasising the importance of palliative care and quality of life for terminally ill people. Facing resource constraints in professional healthcare, some governments expect informal caregivers like volunteers to assume a greater share of care provision. We know volunteers are present in palliative care and perform many roles, ranging from administration to providing companionship. However, we do not know how involved they are in the organisation of care and how healthcare organisations appraise their involvement. To address this, we provide an extensive description of the involvement of volunteers who provide direct patient palliative care across the Flemish healthcare system in Belgium. We conducted a cross-sectional postal survey of 342 healthcare organisations in Flanders and Brussels in 2016, including full-population samples of palliative care units, palliative day care centres, palliative home-care teams, medical oncology departments, sitting services, community home-care services, and a random sample of nursing homes. Volunteer involvement was measured using Sallnow and Paul's power-sharing model, which describes five hierarchical levels of engagement, ranging from being informed about the organisation of care to autonomy over certain aspects of care provision. Response was obtained for 254 (79%) organisations. Volunteers were often informed about and consulted regarding the organisation of care, but healthcare organisations did not wish for more autonomous forms of volunteer involvement. Three clusters of volunteer involvement were found: "strong involvement" (31.5%), "restricted involvement" (44%), and "uninvolved" (24.5%). Degree of involvement was found to be positively associated with volunteer training (p < 0.001) and performance of practical (p < 0.001) and psychosocial care tasks (p < 0.001). Dedicated palliative care services displayed a strong degree of volunteer involvement, contrary to generalist palliative care services, suggesting volunteers have a more important position in dedicated palliative care services. A link is found between volunteer involvement, training, and task performance.

Palliative care volunteerism across the healthcare system: A survey study.

BACKGROUND: Volunteers fulfil several roles in supporting terminally ill people and their relatives and can positively influence quality of care. Healthcare in many countries faces resource constraints and some governments now expect communities to provide an increasing proportion of palliative care. However, systematic insights into volunteer presence, tasks and training and organisational challenges for volunteerism are lacking. AIM: Describe organised volunteerism in palliative direct patient care across the Flemish healthcare system (Belgium). DESIGN: A cross-sectional postal survey using a self-developed questionnaire was conducted with 342 healthcare organisations. SETTING/PARTICIPANTS: The study included full population samples of palliative care units, palliative day-care centres, palliative home care teams, medical oncology departments, sitting services, community home care services and a random sample of nursing homes. RESULTS: Responses were obtained for 254 (79%) organisations; 80% have volunteers providing direct patient care. Psychosocial, signalling and existential care tasks were the most prevalent volunteer tasks. The most cited organisational barriers were finding suitable (84%) and new (80%) volunteers; 33% of organisations offered obligatory training (75% dedicated palliative care, 12% nursing homes). Differences in volunteer use were associated with training needs and prevalence of organisational barriers. CONCLUSION: Results suggest potential for larger volunteer contingents. The necessity of volunteer support and training and organisational coordination of recruitment efforts is emphasised. Organisations are encouraged to invest in adequate volunteer support and training. The potential of shared frameworks for recruitment and training of volunteers is discussed. Future research should study volunteerism at the volunteer level to contrast with organisational data.