Cargando…
Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers
BACKGROUND: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in prov...
Autores principales: | , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2021
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8240189/ https://www.ncbi.nlm.nih.gov/pubmed/34187469 http://dx.doi.org/10.1186/s12913-021-06611-0 |
_version_ | 1783715163833106432 |
---|---|
author | Harrison, Reema Raman, Madhav Walpola, Ramesh Lahiru Chauhan, Ashfaq Sansom-Daly, Ursula M. |
author_facet | Harrison, Reema Raman, Madhav Walpola, Ramesh Lahiru Chauhan, Ashfaq Sansom-Daly, Ursula M. |
author_sort | Harrison, Reema |
collection | PubMed |
description | BACKGROUND: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. METHODS: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. RESULTS: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. CONCLUSION: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care. |
format | Online Article Text |
id | pubmed-8240189 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2021 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-82401892021-06-29 Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers Harrison, Reema Raman, Madhav Walpola, Ramesh Lahiru Chauhan, Ashfaq Sansom-Daly, Ursula M. BMC Health Serv Res Research BACKGROUND: Family-based ‘informal’ caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. METHODS: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. RESULTS: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. CONCLUSION: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care. BioMed Central 2021-06-29 /pmc/articles/PMC8240189/ /pubmed/34187469 http://dx.doi.org/10.1186/s12913-021-06611-0 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
spellingShingle | Research Harrison, Reema Raman, Madhav Walpola, Ramesh Lahiru Chauhan, Ashfaq Sansom-Daly, Ursula M. Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title | Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title_full | Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title_fullStr | Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title_full_unstemmed | Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title_short | Preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
title_sort | preparing for partnerships in cancer care: an explorative analysis of the role of family-based caregivers |
topic | Research |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8240189/ https://www.ncbi.nlm.nih.gov/pubmed/34187469 http://dx.doi.org/10.1186/s12913-021-06611-0 |
work_keys_str_mv | AT harrisonreema preparingforpartnershipsincancercareanexplorativeanalysisoftheroleoffamilybasedcaregivers AT ramanmadhav preparingforpartnershipsincancercareanexplorativeanalysisoftheroleoffamilybasedcaregivers AT walpolarameshlahiru preparingforpartnershipsincancercareanexplorativeanalysisoftheroleoffamilybasedcaregivers AT chauhanashfaq preparingforpartnershipsincancercareanexplorativeanalysisoftheroleoffamilybasedcaregivers AT sansomdalyursulam preparingforpartnershipsincancercareanexplorativeanalysisoftheroleoffamilybasedcaregivers |