‘Someone must do it’: multiple views on family’s role in end-of-life care – an international qualitative study
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PROVIDER: S-EPMC11295216 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
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Project description:BackgroundMany people with dementia reach the end-of-life without an advance care plan. Many are not ready to have conversations about end-of-life, and decision-making is left to their families and professionals when they no longer have capacity. Carers may benefit from further support with decision-making. To develop this support, it is important to understand the decision-making process.AimExplore with family carers and people living with dementia the decision-making process and factors that influence decision-making in dementia end of life care, to produce a model of decision-making in the context of dementia end-of-life care.MethodsSemi-structured interviews with 21 family carers and 11 people with dementia in England (2018-2019) from memory clinics, general practice and carer organisations. Interviews were analysed using thematic analysis and findings were mapped onto the Interprofessional Shared Decision Making model, refined to produce a modified model of decision-making in dementia.ResultsParticipants described five key decisions towards the end-of-life as examples of decision making. We used these experiences to produce a modified model of decision-making in dementia end-of-life-care. The model considers the contextual factors that influence the decision-making process, including: personal preferences; advance care planning and Lasting Power of Attorney; capacity and health and wellbeing of the person with dementia; support from others and clarity of roles. The decision-making process consists of seven inter-linked stages: 1) identifying the decision maker or team; 2) sharing and exchanging information; 3) clarifying values and preferences; 4) managing and considering emotions; 5) considering the feasibility of options; 6) balancing preferred choice and the actual choice; and 7) implementation and reflecting on outcomes.ConclusionsThe modified model breaks down the decision-making process and attempts to simplify the process while capturing the subtle nuances of decision making. It provides a framework for conversations and supporting decisions by carers.
| S-EPMC8158904 | biostudies-literature
Project description:Although there are studies on the use of social media and palliative and end-of-life care (PEOLC), there are no studies specifically investigating the content of online public feedback about PEOLC services. This study sought to understand experiences of end-of-life care provided in hospitals in the West of Scotland by exploring the main themes within the content of stories posted on a nationally endorsed nonprofit feedback online platform, Care Opinion, within a 2-year period. We used "Appreciative Inquiry" as a theoretical framework for this study to determine what works well in end-of-life care, while also identifying areas for further improvement. Of the 1428 stories published on "Care Opinion" from March 2019 to 2021 regarding hospitals in the West of Scotland, 48 (3.36%) were related to end-of-life care, of which all were included in data analysis. Using the software package NVivo and thematic analysis, we identified 4 key themes. We found that people overwhelmingly posted positive feedback about their experiences with end-of-life care. People reported positively about staff professionalism in providing compassionate and person-centered care to meet their loved ones needs at end of life. Other experiences of care related to challenges facing healthcare services, particularly during the COVID-19 pandemic. Quality appraisal of staff responses highlighted areas for improving feedback. This study can add to the aim of improving staff response to people's concerns about end-of-life care. This study has provided a novel perspective of patients' experiences of end-of-life care in hospitals in the West of Scotland. Novel insights were the appreciation of quality of care, staff professionalism, effective communication, and meeting patient's needs at end-of-life particularly by nursing staff.
| S-EPMC9158404 | biostudies-literature
Project description:BackgroundGeneral practitioners (GPs) play a pivotal role in providing end-of-life care in the community. Although they value end-of-life care, they have apprehensions about providing care in view of the limitations in knowledge and skills in end-of-life care. This review aimed to explore, synthesise, and analyse the views of general practitioners on end-of-life care learning preferences.MethodsMEDLINE, CINAHL, PsycINFO, EMBASE, Scopus, Web of Science, and Cochrane were searched for literature on the views of general practitioners on end-of-life care learning preferences from 01/01/1990 to 31/05/2021. Methodological quality was reported.ResultsOf the 10,037 articles identified, 23 were included for the review. Five themes developed from the review. The desire to provide palliative care, as well as self-actualisation needs, relevance to practice, a sense of responsibility, and a therapeutic bond, motivates general practitioners to learn end-of-life care. Some of the learning needs expressed were pain and symptom management, communication skills, and addressing caregiver needs. Experiential learning and pragmatist learning styles were preferred learning styles. They perceived the need for an amicable learning environment in which they could freely express their deficiencies. The review also identified barriers to learning, challenges at personal and professional level, feelings of disempowerment, and conflicts in care.ConclusionGPs' preference for learning about end-of-life care was influenced by the value attributed to learning, context and content, as well as preference for learning styles and the availability of resources. Thus, future trainings must be in alignment with the GPs' learning preferences.
| S-EPMC9490975 | biostudies-literature
Project description:Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.
| S-EPMC5555493 | biostudies-other
Project description:BackgroundQualitative research investigating pharmacists' participation in Long-Term Care (LTC) within interdisciplinary teams is scarce.AimTo characterize how pharmacists' participation in a national network of LTC is perceived by healthcare professionals and other key stakeholders.MethodIndividual, in-depth, semi-structured interviews of participants (nurses, physicians, pharmacists, and LTC researchers) enrolled purposively or through snowballing sampling techniques, with the final sample being comprised of fourteen participants. Data analysis followed a deductive coding approach framed by Role Theory and supplemented with an inductive coding for additional themes.ResultsFour Role Theory constructs were identified from the primary data-role identity, overqualification, ambiguity, underqualification. Clinical pharmacy services, logistics and educational activities were pointed out as representing the identity of pharmacists' interventions. Despite the clear identification of LTC pharmacists' interventions, pharmacist expertise on medicine optimization seemed to be underused (role overqualification), as a result of lack of time, lower proactivity in healthcare teams' integration, and the absence of a legal framework targeted to LTC pharmacy practice (role ambiguity). Additional clinical training, including in the management of older people's health conditions, nutrition, and palliative care were missing (role underqualification).ConclusionLTC pharmacists can provide essential services (e.g., clinical pharmacy, logistics, educational interventions), although additional training and a clearer legal framework are missing to better define pharmacists' roles in LTC pharmacy practice.
| S-EPMC9614740 | biostudies-literature
Project description:Introduction: A life-threatening illness can cause the involvement of family members and the imposition of psychological and physical stress on them. Certainly, the family is a very valuable resource in patient care and plays an important role in maintaining the emotional support and patient's recovery. The aim of this study was to explain the family members' supporting behaviors of the patient admitted to the cardiac special units. Methods: This qualitative study was performed in the cardiac special units in Isfahan. The number of participants was 20, including 5 nurses, 8 family members, and 7 patients. The data were collected through interview and observation by purposive sampling. Then, the data were analyzed by Graneheim and Lundman's qualitative content analysis method. The study lasted 12 months. Results: Data analysis showed that family's support can be classified into three levels, including support by the therapeutic alliance (attempts to console and reassure, restoration of selfesteem, diminishing patient's insensitivity, commitment to the patient, and visiting the patient ), participatory information (obtaining reliable information from the nurse, active role in providing meaningful information about the patient's prognosis), practical and instrumental support (searching for economic support resources, providing the patient with the necessary equipment, trying to do the right care taking into account the family culture). Conclusion: Understanding family's supportive behaviors can help improve counseling and planning for quality care of patients admitted to the cardiac care units (CCUs).
| S-EPMC7322406 | biostudies-literature
Project description:BackgroundEarly palliative/supportive care (PSC) consultation and advance care planning (ACP) improve outcomes for patients with incurable cancer. However, PSC is underutilized in the United States.ObjectiveTo examine philosophical differences among PSC, radiation oncology (RO), and medical oncology (MO) physicians in order to understand barriers to early PSC referral.DesignAn electronic survey collected views of a nationwide cohort of health-care professionals regarding ACP and end-of-life care. Setting/Participants/Measurements: A subgroup analysis compared the responses from all 51 PSC, 178 RO, and 81 MO physician participants (12% response rate), using Pearson χ2 and Mann-Whitney U tests for categorical and ordinal data, respectively.ResultsMore statistically significant differences were observed between RO-PSC (12 questions) and MO-PSC (12 questions) than RO-MO (4 questions). Both RO and MO were more likely than PSC physicians to believe doctors adequately care for emotional ( P < .001) and physical ( P < .001) needs of patients with an incurable illness. Both RO and MO were also less likely to believe that PSC physicians were helpful at addressing these needs ( P = .002 and <.001, respectively) or that patients' awareness of their life expectancy leads to better medical ( P = .007 and .002, respectively) and personal ( P = .001 for each) decisions. Palliative/supportive care physicians felt that doctors are generally less successful at explaining/clarifying advanced life-sustaining treatments than RO ( P < .001) or MO ( P = .004). MO favored later initiation of ACP than either RO ( P = .006) or PSC physicians ( P = .004).ConclusionsDifferences in perception of appropriate end-of-life care exist between oncologists and PSC physicians, suggesting a need for improved education and communication between these groups.
| S-EPMC6026573 | biostudies-literature
Project description:BackgroundProviding high-quality end-of-life care is currently a paramount health priority. Given that the standard of care is intrinsically linked to nurses' motivations, it is becoming too imperative to explore the contributing factors Consequently, this study was undertaken to elucidate the experiences of Iranian nurses regarding their motivation for delivering end-of-life care.MethodsThis research is a qualitative, descriptive inquiry employing conventional content analysis, carried out at two governmental hospitals in Gorgan, northern Iran, from February to July 2023. 12 nurses were purposefully selected to participate in the study, ensuring maximal diversity. The data were collected through semi structured interviews and analyzed using Graneheim and Lundman's five-step method. The coding process was facilitated by the useof MAXQDA version 10 software. To establish rigor, the four criteria outlined by Guba and Lincoln were applied.Resultsthe participants included eight women and four men with an average age of 39.6 ± 6.31 years. The data analysis yielded five main categories and fifteen subcategories. The main categories were: "The Foundations of professional care in nursing", "Core Drivers in Optimal End-of-Life Care", "Family Involvement in End-of-Life Care", "Incorporating Spiritualism in Care" and "Dominant motivational Issues Within the Caregiving Atmosphere".ConclusionsThis study delineates the experiences that influence the provision of end-of-life care from the perspective of Iranian nurses. Innate traits such as empathy and a passion for nursing, in addition to nurses' moral compass and spiritual beliefs, serve as pivotal motivational stimuli. Leveraging these findings can be instrumental in shaping healthcare practices and policies to enhance the quality of end-of-life care.
| S-EPMC11556213 | biostudies-literature
Project description:BackgroundWith advances in medicine and technology, intensive care units (ICUs) have the capacity to treat patients who would have previously not been expected to survive and would therefore not have been managed in ICUs. When an individual is not expected to survive, doctors and nurses face the modern ethical dilemma of death associated with withdrawal of life-supporting strategies. The aim of this study was to identify difficulties perceived by ICU nurses providing end-of-life care (EOLC) in Poland.MethodsThe qualitative study was designed to investigate the difficulties, and the related barriers, to EOLC provided in ICUs in Poland. We conducted individual telephone interviews with ICU nurses from across Poland.ResultsThe main issues raised during the interviews included (1) barriers attributable to the hospital, (2) barriers related to the patient's family, and (3) barriers related to the ICU personnel providing direct EOLC. The interviewed nurses considered the lack of support from managers to be the main barrier. We found that ICU nurses in Poland dealt with end-of-life aspects that were emotionally and psychologically taxing. In addition, they lacked specialized training in this area, especially with regard to family care and care provision.ConclusionsA pressing need exists to improve facilities and make equipment ensuring a desirable standard of care more available. Specialized palliative care training programs should be incorporated into compulsory nursing curricula for ICU nurses.
| S-EPMC7139169 | biostudies-literature
Project description:PurposeTo report the experiences of End of Life (EoL) care in UK care homes during the COVID-19 pandemic.MethodsUK care home staff and family carers of residents in care home took part in remote, semi-structured interviews from October to November 2020, with 20 participants followed-up in March 2021. Interviews were conducted via telephone or online platforms and qualitatively analysed using inductive thematic analysis.ResultsForty-two participants (26 family carers and 16 care home staff) were included in a wider qualitative study exploring the impact on dementia care homes during the pandemic. Of these, 11 family carers and 9 care home staff participated in a follow-up interview. Following descriptive thematic analysis, three central themes concerning EoL care during the pandemic specifically, were conceptualised and redefined through research team discussions: 1) Wasting or losing time; 2) Maintaining control, plans and routine; and 3) Coping with loss and lack of support. Lack of suitable, meaningful visits with people with dementia in care homes resulted in negative feelings of guilt and abandonment with both family carers and care home staff. Where families experienced positive EoL visits, these appeared to breach public health restrictions at that time.ConclusionIt is recommended that care homes receive clear guidance from the government offering equitable contact with relatives at EoL to all family members, to support their grieving and avoid subsequent negative impacts to emotional wellbeing.
| S-EPMC9155982 | biostudies-literature