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A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.

ABSTRACT: Volunteers have been present in palliative care since its inception. With the development of palliative care systems, their role and position are changing. Given growing long-term care needs and limited resources in health and social care, volunteers are becoming an important resource in meeting these needs. In Croatia, palliative care has been developing as an integrated care model since 2014. To assess the position and the role of volunteers, we analyzed legislative documents from healthcare and social care and conducted a focus group with volunteers in palliative care. We found that volunteers provide support from the social aspect of care, for the patient and the family. The formal palliative care system involves them as partners in the provision of care, even though this cooperation is informal. The main determinants of their activities are an individualized approach, flexibility, a community presence, and project funding. In conclusion, these determinants allow them to react quickly to identified needs, but with them come some uncertainties of their sustainability. Their activities could indicate what needs to be integrated between health and social care and in what areas. Volunteers both fill in gaps in the system and are ahead of the system, and by doing this they develop new processes around identified unmet needs.

SUBMITTER: Vocanec D

PROVIDER: S-EPMC9266722 | biostudies-literature | 2022 Jul

REPOSITORIES: biostudies-literature

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A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.

Vočanec Dorja D Lončarek Karmen K Banadinović Maja M Sović Slavica S Džakula Aleksandar A

International journal of environmental research and public health 20220705 13

Volunteers have been present in palliative care since its inception. With the development of palliative care systems, their role and position are changing. Given growing long-term care needs and limited resources in health and social care, volunteers are becoming an important resource in meeting these needs. In Croatia, palliative care has been developing as an integrated care model since 2014. To assess the position and the role of volunteers, we analyzed legislative documents from healthcare a ...[more]

PMID: 35805861

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Project description:ObjectivesPreschool children with complex needs require a multidimensional care model. In such a model, paediatricians are one of the key stakeholders. This study examines Croatian paediatricians' experiences and perceptions of their role in the care process. It explores their view of the other stakeholders, practices and determinants that influence their role and overall quality of care.DesignA desk review was performed as the first part of the research. It included a search of electronic bibliographic databases using a structured set of keywords and an analysis of selected strategic, policy and legislative documents, registers, guidelines and reports related to the research topic. This part of the research helped form the research protocol for the two focus groups that followed.Participants12 primary, secondary and tertiary care paediatricians participated in the focus groups, following the criteria: specialist paediatric experience longer than 5 years, active work status in the healthcare system at the primary, secondary or tertiary level, personal experience of working with preschool children with complex needs.ResultsThe first part of the research identified structural shortcomings, ambiguity in defining systematic approaches to care processes, quality challenges and a lack of multidimensional evaluation in the care system. Focus groups provided insight into the everyday dynamics of those challenges from the paediatricians' point of view. Six themes emerged from the analysis of the focus groups: (1) profile and needs of preschool children with complex needs; (2) parents in the process of care from the paediatrician's perception; (3) the role of paediatricians in the process of caring for a preschool child with complex needs; (4) the absolute and relative scarcity of public resources; (5) the need for systematic solutions; (6) the importance of personal engagement.ConclusionsIntegration, coordination and continuity of care for preschool children with complex needs cannot be achieved by merely focusing on providing enough human and infrastructural resources. Without clear insight into the interrelation of structural inputs and stakeholders' specific standpoints, we risk further fragmentation and a decrease in the quality of care.

Project description:BackgroundIn palliative care, caring for spouses suffering from incurable diseases can provoke a range of reactions in informal caregivers that are part of the grieving process, as well as other reactions and ways of coping with a current role, which is often challenging. Anticipatory grief occurs before death and is often present in people who face the eventual loss of a loved one or their own death. This study aimed to gain insight into the anticipatory grief of informal caregivers who are providing at-home palliative care for their ill spouse. Our research questions focus on investigating the meanings caregivers ascribe to the experience of providing palliative care and the impending loss of a spouse.MethodsA qualitative study was conducted in Zagreb, Croatia, from April to June of 2021. Eight participants took part in the study. Participants in the study were informal caregivers of a spouse suffering from an incurable, terminal disease that receives at-home palliative care. Data were collected through semi-structured face-to-face interviews. Transcripts were analyzed by interpretive phenomenological analysis.ResultsThe analysis provided several meanings that represent caregivers' experiences and coping strategies. The caregivers bravely face the challenges of "living with an illness" by maintaining optimism, strong cohesion with their partner and a sense of joint destiny. They tend to repress their own personal needs and feelings while carrying the burden of care. Caregivers tend to stay positive and focus on living in the present by taking an active role in providing care for the ill spouse and family.ConclusionsAnticipatory grief presents emotional, cognitive, and spiritual challenges to spouse caregivers in palliative care. The contribution of this study was to gain insight into the meaning that caregivers ascribe to the experience and challenges they face while providing everyday care for their ill spouse. Confirming prior results, the experiences are generally similar to all caregivers, pointing to the need for substantial improvement in the quality of the support and help from the healthcare workers and other experts who provide palliative care and support for the patients' family members.

Project description:PurposeTo describe the process of delivery of pediatric palliative care from the perspective of a pediatric interdisciplinary team and the children's parents.MethodsA qualitative descriptive case study was conducted. Purposeful sampling took place within a specialized pediatric palliative care Unit in Madrid (Spain), located at the Niño Jesus Hospital. The study participants included a specialized pediatric palliative care team from Madrid's pediatric palliative care program, other professional teams involved in interdisciplinary care and parents of children under pediatric palliative care. Data were collected via semi-structured interviews, focus groups and researchers' field notes. A thematic analysis was performed.ResultsThis study included 28 participants (20 women, 8 men), of whom 18 were professionals who belonged to the pediatric palliative care interdisciplinary team, 4 professionals were from other units that collaborated with the pediatric palliative care, and 6 were parents (5 women, 1 man). The mean age of the pediatric palliative care members was 38.2 years (SD ± 7.9), that of the collaborating professionals was 40.5 (SD ± 6.8), and that of the parents was 44.2 (SD ± 5.4). Two main themes emerged: a) Pediatric palliative care has a distinct identity, associated with life. It represents the provision of special care in highly complex children, in the context of the home, far from the hospital environment; b) The team is key: its interdisciplinary organization provides a more comprehensive view of the child and their family, fosters communication among professionals, and improves coordination with other services involved in the care of children. The mindset shift experienced by ID-PPC professionals towards a palliative approach makes them more sensitive to the needs of their patients and leads them to develop specific skills in areas such as communication, decision-making, and adaptability that were identified as differentiating aspects of pediatric palliative care.ConclusionsDescribing pediatric palliative care from the professional and parental perspective helps to establish realistic and comprehensive goals for the care of children and their parents. The findings of this study may help with the establishment of a pediatric palliative care team, as a necessary organizational change in a health care system that cares for children with complex and life-threatening conditions. Promoting training in pediatric palliative care, prioritizing more horizontal organizations, providing tools and spaces for coordination and communication between professionals from different services, together with the creation of a position of case coordinator in the care process of children could enhance the understanding of pediatric palliative care services.

Project description:BACKGROUND:Volunteers play a significant role in supporting hospice and palliative care in Africa, but little is known about the types of volunteers, their motivations and roles in service delivery. METHODS:Palliative care experts from 30 African countries were invited to participate in an online survey, conducted in English and French, that consisted of 58 questions on: socio-demographics, the activities, motivation and coordination of volunteers, and an appraisal of recent developments in volunteering. The questionnaire was pre-tested in Uganda. Quantitative data was analysed descriptively with SPSS v22; answers on open-ended questions were analysed using content analysis. RESULTS:Twenty-five respondents from 21 countries replied to the questionnaire. The typical volunteer was reported to be a female aged between 30 and 50 years. Volunteer roles included, among others: direct patient assistance, providing psychosocial / spiritual support, and assisting patients' families. Respondents considered altruism, civic engagement and personal gain (for a professional career) as volunteers' most significant motivational drivers. One in two respondents noted that recruiting volunteers is easy, and cooperation with the communities was often mentioned as helpful. Trainings mostly occurred before the first assignment, with topics covering the palliative care concept, care, psychosocial support and team work. Half of respondents described recent overall volunteering developments as positive, while the other half described problems primarily with financing and motivation. Most volunteers received transportation allowances or bicycles; some received monetary compensation. CONCLUSIONS:The findings show a wide range of volunteering in palliative care. We identified volunteers as typically 30-50 years old, non-professional females, motivated by altruism, a sense of civic engagement and personal gain. Palliative care services benefit from volunteers who take on high workloads and are close to the patients. The main challenges for volunteer programmes are funding and the long-term motivation of volunteers.

Project description:ObjectivesNurses are generally present, and often influential, in supporting patient and family acceptance of medical futility and in assisting doctors in negotiating referral to palliative care. Yet the specificities of the nursing role and how nurses may contribute to timely and effective referrals is not well understood. This study aimed to systematically explore hospital-based nurses' accounts of the transition to palliative care, and the potential role of nurses in facilitating more effective palliative care transitions.DesignQualitative study using semistructured interviews.SettingTwo health services with public as well as private clinical environments in a major metropolitan area of Australia.ParticipantsHospital-based nurses (n=20) who regularly work with patients at the point of referral and in managing transitions to palliative care.ResultsFour significant themes emerged from thematic analysis. These include: (1) professional dynamics and the roles played by nurses in initiating the transition to palliative care; (2) the value of nurses' informal interactions in timely and effective transitions; (3) the emerging challenge of managing task-oriented nursing versus intense emotional nursing work at the point of medical futility and (4) the emotional burden experienced by nurses within this clinical context. Nurses self-reported occupying critical albeit complex roles in the management of medical futility and the transition to palliative care. They reported experiencing significant emotional burden in balancing interpersonal and interprofessional relationships during this time.ConclusionsThe results suggest that nurses may be utilised in a more formalised and systematic fashion in the context of managing medical futility and the need to topicalise the transition, with the focus shifted away from medical referrals towards more team-based and patient-centred timely transitions. Further research focused on the experiences of doctors, allied health professionals, patients and families is required to provide a broader interdisciplinary understanding of futility and contributions to the negotiation of palliative care.

Dataset Information

A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.

Publications

A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.

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