The Caregiver Role in Palliative Care: A Systematic Review of the Literature

Reigada, Carla; Pais-Ribeiro, José; Novellas, Anna; Tavares, Miguel; ̧alves, Edna Gonc

doi:10.4172/2375-4273.1000143

Cited by 22 publications

(22 citation statements)

References 18 publications

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“…Family caregivers take different roles during the care process as caregivers, welfare enhancers, facilitators, apprentices, and minimisers/managers of suffering. They carry out many tasks and are responsible for the continuity of care and making decisions at the end of life (54). In the caregiving relationship, burden, resilience, needs, and rewards are interrelated (55).…”

Section: Discussionmentioning

confidence: 99%

Needs Assessment of Safe Medicines Management for Older People With Cognitive Disorders in Home Care: An Integrative Systematic Review

et al. 2021

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Background and Objectives: The global trend of healthcare is to improve the quality and safety of care for older people with cognitive disorders in their own home. There is a need to identify how medicines management for these older people who are cared by their family caregivers can be safeguarded. This integrative systematic review aimed to perform the needs assessment of medicines management for older people with cognitive disorders who receive care from their family caregivers in their own home.Methods: An integrative systematic review of the international literature was conducted to retrieve all original qualitative and quantitative studies that involved the family caregivers of older people with cognitive disorders in medicines management in their own home. MeSH terms and relevant keywords were used to search four online databases of PubMed (including Medline), Scopus, CINAHL, and Web of Science and to retrieve studies published up to March 2021. Data were extracted by two independent researchers, and the review process was informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). Given that selected studies were heterogeneous in terms of the methodological structure and research outcomes, a meta-analysis could not be performed. Therefore, narrative data analysis and knowledge synthesis were performed to report the review results.Results: The search process led to retrieving 1,241 studies, of which 12 studies were selected for data analysis and knowledge synthesis. They involved 3,890 older people with cognitive disorders and 3,465 family caregivers. Their methodologies varied and included cohort, randomised controlled trial, cross-sectional studies, grounded theory, qualitative framework analysis, and thematic analysis. The pillars that supported safe medicines management with the participation of family caregivers in home care consisted of the interconnection between older people's needs, family caregivers' role, and collaboration of multidisciplinary healthcare professionals.Conclusion: Medicines management for older people with cognitive disorders is complex and multidimensional. This systematic review provides a comprehensive image of the interconnection between factors influencing the safety of medicines management in home care. Considering that home-based medicines management is accompanied with stress and burden in family caregivers, multidisciplinary collaboration between healthcare professionals is essential along with the empowerment of family caregivers through education and support.

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Section: Discussionmentioning

confidence: 99%

Needs Assessment of Safe Medicines Management for Older People With Cognitive Disorders in Home Care: An Integrative Systematic Review

et al. 2021

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“…19 As participants mentioned, knowledge is important because it is the basis of the design of tools for the monitoring of patients, to provide QoL. Also, it allows anticipating to the different complications that can appear in the care of this type of patients.…”

Section: Discussionmentioning

confidence: 99%

Qualitative Study for the Development of a Telemedicine System in Palliative Care

Egoavil¹,

Condor²,

Pinazo-Vidal³

et al. 2017

Palliat Med Hosp Care Open J

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Introduction: Technological advances in public health have allowed the life expectancy of people to increase. However, new challenges appear in populations that age as the greatest number of chronic and oncological diseases requiring chronic and/or palliative care. In Peru, this is an area that has not developed. The use of Information and Communication Technologies (ICT) can optimize healthcare, and in the case of palliative care they could shorten the distances between the specialist, the caregiver and the patient. Objective: To know the needs of health professionals and caregivers of patients who are in palliative care, regarding the management of information, knowledge, attitudes and the use of ICT in palliative care. Materials and Methods: As part of the TeleJampiq project, a first phase of qualitative study is developed. A focus group was conducted with six caregivers. Family members' information was obtained through two field reports and two interviews. Finally, the exploration of the needs and suggestions of palliative care specialists was carried out by ten in-depth interviews (six physicians, one psychologist and three nurses). Through the data analysis we were able to identify three major themes in which the results were classified: Management of information on chronic diseases and terminal patients, knowledge and actions in palliative care and use of ICT for palliative care. Results: Management of information on chronic diseases and terminal patients. It is essential to draw a distinction between terminability and palliation. Managing these concepts could make a difference from the start of treatment. Knowledge and actions in palliative care. Nonfamily caregivers' knowledge of the meaning of palliative care is like that of specialists (doctors and nurses). Use of ICT for palliative care. The use of mobile devices among health personnel interviewed is overwhelming. Engaging in aspects of information management to other specialists such as nutritionists and psychologists would be beneficial. Conclusions: It is necessary to use ICT in the field of chronic and palliative care, being a fundamental aspect the communication between personnel working in the system and the use of scales, care protocols, among others.

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“…10,11 Patients also mostly turn to professional carers for physical and disease-related problems, but do not want to burden them with discussing their psychosocial or existential needs. 12 Family carers' time spent caring for their relative is often more substantial than the time spent by healthcare professionals, 13 which means that there are many opportunities to discuss advance care planning within the home setting. Although family carers are mostly willing and welcoming to have these conversations, they often feel unprepared, anxious, or uncomfortable to do so.…”

Section: Introductionmentioning

confidence: 99%

Support from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey

et al. 2022

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Background: Family carers have a prominent role in end-of-life care for seriously ill persons. However, most of the Advance Care Planning literature is focused on the role of healthcare professionals. Aims: To investigate (1) what proportion of family carers discussed advance care planning with their relative and associated socio-demographic and clinical characteristics (2) what proportion received support from healthcare professionals for these conversations, (3) what type of support they received and (4) to what extent the type of support received was considered sufficient. Design/participants: Population-based cross-sectional survey in Belgium of bereaved family carers of persons with a serious chronic illness ( N = 3000) who died 2–6 months before the sample was drawn, identified through three sickness funds. The survey explored support from healthcare professionals for family carers during the last 3 months of the patient’s life. Results: Response rate was 55%. The proportion of family carers that engaged in an advance care planning conversation with their relative was 46.9%. Of these family carers, 78.1% received support from a healthcare professional, mostly by doing the advance care planning conversation together (53.8%). Of family carers receiving support from a healthcare professional, 57.4% deemed the support sufficient. Conclusion: Many family carers engage in advance care planning conversations with their dying relative. Healthcare professionals often support them by performing the advance care planning conversations together. More insight into how family carers can be supported to conduct these advance care planning conversations, both with and without involvement of healthcare professionals, is necessary.

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The Caregiver Role in Palliative Care: A Systematic Review of the Literature

Cited by 22 publications

References 18 publications

Needs Assessment of Safe Medicines Management for Older People With Cognitive Disorders in Home Care: An Integrative Systematic Review

Needs Assessment of Safe Medicines Management for Older People With Cognitive Disorders in Home Care: An Integrative Systematic Review

Qualitative Study for the Development of a Telemedicine System in Palliative Care

Support from healthcare professionals in empowering family carers to discuss advance care planning: A population-based survey

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