Family caregivers’ preferences for support when caring for a family member with cancer in late palliative phase who wish to die at home – a grounded theory study
Tóm tắt
Family caregivers are essential in end-of-life care for cancer patients who wish to die at home. The knowledge is still limited regarding family caregivers needs and preferences for support and whether the preferences change during the patient’s illness trajectory. Therefore, the aim was to explore family caregivers’ preferences for support from home care services over time when caring for a family member with cancer at the end of life who wished to die at home. A qualitative method was applied according to Grounded Theory. Data was collected longitudinally over the illness trajectory by means of repeated individual interviews (n = 22) with adult family caregivers (n = 11). Sampling, data collection and data analysis were undertaken simultaneously in line with the constant comparative method. The findings are captured in the core category “hold out in duty and love”. The categories “having control and readiness for action” and “being involved in care” describe the family caregivers’ preferences for being prepared and able to handle procedures, medical treatment and care, and to be involved by the healthcare personnel in the patient’s care and decision making. The categories “being seen and confirmed” and “having a respite” describe family caregivers’ preferences for support according to their own needs to be able to persevere in the situation. Despite deterioration in the patient’s illness and the increasing responsibility family caregiver struggle to hold out and focus on being in the present. Over time together with deterioration in the patient’s illness and changes in the situation, they expressed a need for more intense and extensive support from the home care services. To meet the family caregivers’ preferences for support a systematic implementation of a person-centred care model and multicomponent psycho- educational interventions performed by nurses can be proposed. Moreover, we suggest developing a tool based on the conceptual model generated in this study to identify and map family caregivers’ needs and preferences for support. Such a tool can facilitate communication and ensure person-centred interventions.
Tài liệu tham khảo
Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):1–10.
Ali M, Capel M, Jones G, Gazi T. The importance of identifying preferred place of death. BMJ Support Palliat Care. 2019;9(1):84–91.
Higginson IJ, Sarmento VP, Calanzani N, Benalia H, Gomes B. Dying at home–is it better: a narrative appraisal of the state of the science. Palliat Med. 2013;27(10):918–24.
Gomes B, Calanzani N, Gysels M, Hall S, Higginson IJ. Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliat care. 2013;12(1):7.
Gomes B, Calanzani N, Koffman J, Higginson IJ. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015;13(1):1.
Nilsson J, Holgersson G, Ullenhag G, Holmgren M, Axelsson B, Carlsson T, et al. Socioeconomy as a prognostic factor for location of death in Swedish palliative cancer patients. BMC Palliat Care. 2021;20(1):1–7.
Costa V, Earle CC, Esplen MJ, Fowler R, Goldman R, Grossman D, et al. The determinants of home and nursing home death: a systematic review and meta-analysis. BMC Palliat Care. 2016;15(1):1–15.
World Health Organization (WHO). Definition of palliative care Geneva: WHO; 2021 [Available from: https://www.who.int/health-topics/palliative-care
Zigante V. Informal care in Europe: exploring formalisation, availability and quality. European Commission. London School of Economics Political Science; 2018.
Sallnow L, Smith R, Ahmedzai SH, Bhadelia A, Chamberlain C, Cong Y, et al. Report of the Lancet Commission on the value of death: bringing death back into life. The Lancet. 2022;399(10327):837–84.
Hudson P, Payne S. Family carers in palliative care-a guide for health and social care professionals. 2009.
Hudson P, Payne S. The future of family caregiving:research, social policy and clinical practice. In: Hudson P SP, editor. Family carers in palliative care: a guide for health and social care professionals. Oxford: Oxford University Press; 2009. pp. 277–303.
Zavagli V, Raccichini M, Ercolani G, Franchini L, Varani S, Pannuti R. Care for carers: an investigation on family caregivers’ needs, tasks, and experiences. Translational Med UniSa. 2019;19:54.
Vermorgen M, Vandenbogaerde I, Van Audenhove C, Hudson P, Deliens L, Cohen J, et al. Are family carers part of the care team providing end-of-life care? A qualitative interview study on the collaboration between family and professional carers. Palliat Med. 2021;35(1):109–19.
Kristanti MS, Effendy C, Utarini A, Vernooij-Dassen M, Engels Y. The experience of family caregivers of patients with cancer in an Asian country: a grounded theory approach. Palliat Med. 2019;33(6):676–84.
Wang T, Molassiotis A, Chung BPM, Tan J-Y. Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review. BMC Palliat care. 2018;17(1):1–29.
Funk L, Stajduhar KI, Toye C, Aoun S, Grande G, Todd CJ. Part 2: home-based family caregiving at the end of life: a comprehensive review of published qualitative research (1998–2008). Palliat Med. 2010;24(6):594–607.
Cui J, Song L, Zhou L, Meng H, Zhao J. Needs of family caregivers of advanced cancer patients: a survey in S hanghai of C hina. Eur J Cancer Care. 2014;23(4):562–9.
Lambert SD, Harrison JD, Smith E, Bonevski B, Carey M, Lawsin C, et al. The unmet needs of partners and caregivers of adults diagnosed with cancer: a systematic review. BMJ Supportive & Palliative care. 2012;2(3):224–30.
Grunfeld E, Coyle D, Whelan T, Clinch J, Reyno L, Earle CC, et al. Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ. 2004;170(12):1795–801.
Choi S, Seo J, editors. Analysis of caregiver burden in palliative care: an integrated review. Nursing forum. Wiley Online Library; 2019.
Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15(6):696–702.
Payne S. EAPC task force on family carers white paper on improving support for family carers in palliative care: part 1. Eur J Palliat Care. 2010;17(5):238–45.
Grant M, Sun V, Fujinami R, Sidhu R, Otis-Green S, Juarez G, et al. editors. Family caregiver burden, skills preparedness, and quality of life in non-small-cell lung cancer. Oncology nursing forum; 2013: NIH Public Access.
Li Y, Li J, Zhang Y, Ding Y, Hu X. The effectiveness of e-Health interventions on caregiver burden, depression, and quality of life in informal caregivers of patients with cancer: a systematic review and meta-analysis of randomized controlled trials. Int J Nurs Stud. 2022:104179.
Alvariza A, Häger-Tibell L, Holm M, Steineck G, Kreicbergs U. Increasing preparedness for caregiving and death in family caregivers of patients with severe illness who are cared for at home–study protocol for a web-based intervention. BMC Palliat care. 2020;19(1):1–8.
Becqué YN, Rietjens JA, van Driel AG, van der Heide A, Witkamp E. Nursing interventions to support family caregivers in end-of-life care at home: a systematic narrative review. Int J Nurs Stud. 2019;97:28–39.
Ahn S, Romo RD, Campbell CL. A systematic review of interventions for family caregivers who care for patients with advanced cancer at home. Patient Educ Couns. 2020;103(8):1518–30.
Jack BA, O’Brien MR, Scrutton J, Baldry CR, Groves KE. Supporting family carers providing end-of‐life home care: a qualitative study on the impact of a hospice at home service. J Clin Nurs. 2015;24(1–2):131–40.
Luker K, Cooke M, Dunn L, Lloyd-Williams M, Pilling M, Todd C. Development and evaluation of an intervention to support family caregivers of people with cancer to provide home-based care at the end of life: a feasibility study. Eur J Oncol Nurs. 2015;19(2):154–61.
Seymour J, Almack K, Kennedy S. Implementing advance care planning: a qualitative study of community nurses’ views and experiences. BMC Palliat care. 2010;9(1):1–9.
Henriksson A, Andershed B, Benzein E, Årestedt K. Adaptation and psychometric evaluation of the preparedness for caregiving scale, caregiver competence scale and rewards of caregiving scale in a sample of Swedish family members of patients with life-threatening illness. Palliat Med. 2012;26(7):930–8.
Gupta R. The revised caregiver burden scale: a preliminary evaluation. Res Social Work Pract. 1999;9(4):508–20.
Ewing G, Brundle C, Payne S, Grande G, Home NAH. The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study. J Pain Symptom Manag. 2013;46(3):395–405.
Matthys O, Dierickx S, Deliens L, Lapeire L, Hudson P, Van Audenhove C et al. How are family caregivers of people with a serious illness supported by healthcare professionals in their caregiving tasks? A cross-sectional survey of bereaved family caregivers. Palliat Med. 2022:02692163211070228.
Hasson F, Nicholson E, Muldrew D, Bamidele O, Payne S, McIlfatrick S. International palliative care research priorities: a systematic review. BMC Palliat care. 2020;19(1):1–16.
Corbin JM, Strauss AL. Basics of qualitative research: techniques and procedures for developing grounded theory. 3rd ed. ed. Thousand Oaks, Calif: Sage; 2008.
Tong A, Sainsbury P, Craig J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care. 2007;19(6):349–57.
Nysæter TM, Olsson C, Sandsdalen T, Wilde-Larsson B, Hov R, Larsson M. Preferences for home care to enable home death among adult patients with cancer in late palliative phase – a grounded theory study. BMC Palliat Care. 2022;21(1):49.
Collinson L, Foster R, Stapleton M, Blakely T. Cancer care coordinators: what are they and what will they cost? N Z Med J. 2013;126:75–86.
Strauss AL, Corbin JM. Basics of qualitative research: techniques and procedures for developing grounded theory. 2nd ed. ed. Thousand Oaks, Calif: Sage; 1998.
Cai Y, Simons A, Toland S, Zhang J, Zheng K. Informal caregivers’ quality of life and management strategies following the transformation of their cancer caregiving role: a qualitative systematic review. Int J Nurs Sci. 2021;8(2):227–36.
Norinder M, Årestedt K, Lind S, Axelsson L, Grande G, Ewing G, et al. Higher levels of unmet support needs in spouses are associated with poorer quality of life–a descriptive cross-sectional study in the context of palliative home care. BMC Palliat Care. 2021;20:1–11.
Holm M, Henriksson A, Carlander I, Wengström Y, Öhlen J. Preparing for family caregiving in specialized palliative home care: an ongoing process. Palliat Support Care. 2015;13(3):767–75.
Gutierrez-Baena B, Romero‐Grimaldi C. Predictive model for the preparedness level of the family caregiver. Int J Nurs Pract. 2022;28(3):e13057.
Karabulutlu EY, Turan GB, Yanmış S. Evaluation of care burden and preparedness of caregivers who provide care to palliative care patients. Palliat Support Care. 2022;20(1):30–7.
Norinder M, Årestedt K, Axelsson L, Grande G, Ewing G, Alvariza A. Increased preparedness for caregiving among family caregivers in specialized home care by using the carer support needs assessment tool intervention. Palliat Support Care. 2023:1–7.
Henriksson A, Årestedt K. Exploring factors and caregiver outcomes associated with feelings of preparedness for caregiving in family caregivers in palliative care: a correlational, cross-sectional study. Palliat Med. 2013;27(7):639–46.
Martín-Martín J, Pérez-Díez-del-Corral M, Olano-Lizarraga M, Valencia-Gil S, Saracíbar-Razquin MI. Family narratives about providing end-of-life care at home. J Fam Nurs. 2022;28(1):17–30.
Bilgin A, Ozdemir L. Interventions to improve the preparedness to care for family caregivers of cancer patients: a systematic review and meta-analysis. Cancer Nurs. 2022;45(3):E689.
Morgan T, Ann Williams L, Trussardi G, Gott M. Gender and family caregiving at the end-of-life in the context of old age: a systematic review. Palliat Med. 2016;30(7):616–24.
Duggleby W, Tycholiz J, Holtslander L, Hudson P, Nekolaichuk C, Mirhosseini M, et al. A metasynthesis study of family caregivers’ transition experiences caring for community-dwelling persons with advanced cancer at the end of life. Palliat Med. 2017;31(7):602–16.
Robinson CA, Bottorff JL, McFee E, Bissell LJ, Fyles G. Caring at home until death: enabled determination. Support Care Cancer. 2017;25(4):1229–36.
Becqué YN, Rietjens JAC, van Driel AG, van der Heide A, Witkamp E. Nursing interventions to support family caregivers in end-of-life care at home: a systematic narrative review. Int J Nurs Stud. 2019;97:28–39.
Håkanson C, Öhlén J, Morin L, Cohen J. A population-level study of place of death and associated factors in Sweden. Scand J Public Health. 2015;43(7):744–51.
Kjellstadli C, Husebø BS, Sandvik H, Flo E, Hunskaar S. Comparing unplanned and potentially planned home deaths: a population-based cross-sectional study. BMC Palliat Care. 2018;17(1):69.
Northern Nurses Federation. Ethical guidelines for nursing research in the Nordic countries. Vård i Norden: Nordic Journal of Nursing Research. 2003;23:1–19.
World Medical Association (WHO). Ethical principles for medical research involving human subjects Geneva: WHO; 1964 [Available from: https://www.wma.net/policies-post/wma-declaration-of-helsinki-ethical-principles-for-medical-research-involving-human-subjects/