A Qualitative Study on the Position and Role of Volunteers in Integrated Care-An Example of Palliative Care in Croatia.
Ontology highlight
ABSTRACT:
SUBMITTER: Vocanec D
PROVIDER: S-EPMC9266722 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description: Not available
| S-EPMC5967037 | biostudies-literature
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.
| S-EPMC9672539 | biostudies-literature
Project description:BACKGROUND:Increasing the quality of life with short interventions for vulnerable patients is one of the objectives of palliative care. Biographical approaches are used in a range of different interventions which may require considerable resources of staff time and energy. This study evaluated the feasibility of training hospice volunteers in biographical interviews of patients confronted with a life-limiting disease. For the purpose of this study, we evaluated resources such as time needed for training, coordination and supervision, outcome such as completion of the intervention in appropriate time and risks such as causing distress in patients or volunteers as major determinants of feasibility. METHODS:Nine volunteers from a hospice service attended an advanced training with an introduction to palliative care, biography work, interview techniques, transcribing and writing. Volunteers interviewed a patient and developed a written narrative from the interview. Volunteers completed a questionnaire before training and were interviewed at the end of the project. The interviews were audiotaped, transcribed, and evaluated using descriptive and qualitative content analysis. RESULTS:Patients provided positive feedback from the intervention. Volunteers felt that their involvement was personally rewarding and were moved by the courage and confidence of the patients. There were no systematic problems or negative experiences reported neither by volunteers nor by patients. CONCLUSIONS:We found the use of volunteers for biography work with patients in palliative care feasible and effective in this study. Volunteers needed supervision and ongoing support in providing this intervention.
| S-EPMC6781359 | biostudies-other
Project description:ObjectivesPopulation ageing and the prevalence of multimorbidity represent major challenges for healthcare systems. People who need long-term care have complex conditions requiring both health and social services. Informal caregivers are emerging as an important part of the long-term care ecosystem. This paper aims to explore the position and capacities of informal caregivers in Croatia.DesignHealth and social care legislative documents were analysed using a structured set of keywords. In addition, focus groups were conducted with informal caregivers who cared for a family member. The qualitative method of thematic analysis was used.Setting and participantsTwo focus groups were conducted with 15 caregivers (13 women and 2 men). Geographically, participants came from all four NUTS2 Croatian regions. All participants cared for a close family member. The length of care provision ranged from 3 to 35 years. Focus groups were conducted using the Zoom platform.ResultsThe analysis of the documents indicates the fragmentation of national policy into health and social policy. Long-term care as a term is recognised only in health policy. However, some components related to long-term care are part of social policy. Caregivers are recognised in social policy, although not in healthcare. In focus groups, three main themes were identified as follows: (1) position and role of the caregivers in the system and society; (2) types of care based on the recipient's need and (3) support for the caregivers.ConclusionThe research showed that the process of exercising certain rights and services for caregivers is not sufficiently clear and feasible in practice. There is a lack of a clearly defined role of caregivers and relationships towards professional care providers in the system. The key to improving long-term care is connecting community services, including health and social services, both formal and informal, with the process of providing care.
| S-EPMC10582946 | biostudies-literature
Project description:BackgroundGrowing evidence demonstrates the benefits of early, integrated palliative care (PC) for patients with advanced cancer and their caregivers. Yet, data are lacking on the communication patterns within this model of care.ObjectiveThe goals of this study were to describe the content of patient-clinician discussions among patients receiving PC and to compare differences in discussion content between oncologists and PC clinicians.DesignWe conducted a qualitative observational analysis.Setting/subjectsWe included patients with incurable lung and esophageal cancer enrolled in a randomized trial of early, integrated PC versus usual oncology care. We analyzed 68 audio-recorded clinic visits (34 oncologist visits; 34 PC clinician visits) immediately after patients' (N = 19) first and second cancer progressions. We examined themes of clinician communication, comparing the content and frequency of discussions between oncologists and PC clinicians.ResultsAlthough both oncology and PC clinicians discussed symptom management, medical understanding, and treatment decision making with patients at nearly all postprogression visits, PC clinicians tended to assess patient understanding of the treatment process and prognosis more often than oncologists. PC clinicians addressed patient coping, caregiver experiences and needs, and advance care planning more frequently than oncologists.ConclusionPC clinicians play a distinct, complementary role to oncologists in providing care for patients with advanced cancer and their caregivers. PC clinicians tend to assess and elaborate on patient understanding of prognosis and treatment and emphasize effective coping, caregiver needs, and advance care planning. These results illuminate the communication elements by which early, integrated PC may improve patient and caregiver outcomes.
| S-EPMC6916528 | biostudies-literature
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.
| S-EPMC4179576 | biostudies-literature
Project description:ObjectiveIn Switzerland, palliative sedation consists of using sedatives to relieve terminally ill patients. It is divided into several steps, with one of them consisting of informing patients and relatives about the procedure. In the current recommendations, there is a lack of orientation about how and when this discussion should take place. Hence, we aim to explore perceptions and experiences of palliative care professionals regarding these questions.MethodsQualitative semi-structured interviews with five physicians and five nurses working in specialised palliative care were conducted. They were then analysed with thematic analysis.ResultsResults showed a uniformity around definition, goals and indications of palliative sedation. However, there was a lack of consistency regarding the process of delivering this information to patients and relatives. Finally, some participants strongly opposed the idea of systematically informing patients in specialised palliative care, while others were more divided on this question.ConclusionDespite a common understanding of the concept of palliative sedation, there is no standard practice when informing patients on palliative sedation among palliative care professionals. Therefore, this study demonstrates the need for further guidelines on this question and calls for a better understanding and knowledge of palliative sedation among health professionals outside palliative care.
| S-EPMC9541839 | biostudies-literature
Project description:ContextCOVID-19 created unprecedented demand for palliative care at a time when in-person communication was highly restricted, straining efforts to care for patients and families.ObjectivesTo qualitatively explore the challenges presented by the COVID-19 pandemic from the perspective of palliative care clinicians. Specifically we sought to: 1) Describe the strategies adopted by palliative care clinicians to cope with new challenges including patient and clinician isolation, prognostication of an emergent disease, and rapidly rising numbers of severely ill patients; 2) Identify additions or adjustments to in-person and system-related palliative care training, methods, and tools made during pandemics.MethodsThis descriptive qualitative study utilized a thematic approach for data analysis of individual, semi-structured interviews with palliative care clinicians (n = 25). Codes, categories, and emerging themes were identified through an iterative, comparative method. Methods align with the Consolidated Criteria for Reporting Qualitative Research (COREQ) RESULTS: A theme of "Expanding the reach of palliative care for today and the future" was identified with three subthemes: 1) Redefining attitudes and hardship due to collective uncertainty, 2) Breaking with the past towards integrated concept of palliative care, and 3) Building capacity through primary palliative care training.ConclusionCOVID-19 forced hospital systems to consider the inclusion of palliative care in unforeseen ways due to an uncontrollable, unpredictable disease. Faced with unprecedented uncertainty, palliative care clinicians utilized strategies for integration and innovation across hospitals, particularly in intensive care units and emergency departments. A need to build capacity through increased primary palliative care access and training was identified.
| S-EPMC8265891 | biostudies-literature
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.
| S-EPMC7158085 | biostudies-literature
Project description:BackgroundAn increasing older population, along with the organizational principle of remaining at home, has moved health care from institutions into the older person's home, where several health care providers facilitate care. The Mobile Integrated Care Model strives to provide cost-efficient, coherent, person-centered health care in the home. In the integrated care team, where the home health care physician is the medical authority, several health care professions work across organizational borders. Therefore, the aim of this study was to describe Home Health Care Physicians perceptions of working and providing health care in the Mobile Integrated Care Model, as well as perceptions of participating in and forming health care.MethodsA phenomenographic qualitative study design, with semi-structured interviews using an interview guide.ResultsWorking within Mobile Integrated Care Model was a different way of working as a physician. The physicians' role was to support the patient by making safe medical decisions. Physicians described themselves as a piece in the team puzzle, where the professional knowledge of others was crucial to give quality health care. Being in the patients' homes was expressed as adding a unique dimension in the provision of health care, and the physicians learned more about the patients by meeting them in their homes than at an institution. This aided the physicians in respecting patient autonomy in medical decision making, even though the physicians sometimes disregarded patient autonomy in favor of their own medical experience. There was a divided view on next of kin participation among the home health care physicians, ranging from always including to total absence of involving next of kin in decision making.ConclusionsThe home health care physicians described the Mobile Integrated Care Model as the best way to work, but there was still a need for additional resources and structure when working in different organizations. The need for full-time employment, additional time or hours, more equipment, access to each other's medical records, and additional collaboration with other health care providers were expressed, which could contribute to increased work satisfaction and facilitate further development of person-centered care in the Mobile Integrated Care Model.
| S-EPMC9252081 | biostudies-literature