An overview of the role of family support in palliative care: a quasi-systematic review
Abstract
Background: Serious suffering due to severe illness presents a challenge in maintaining the highest quality of life for the patient until the end of life. It also involves caring for the family and loved ones who accompany the seriously ill individual. Hence, there is a need to provide support not only to the patient but also to the family members and caregivers, who require assistance both in direct care and in psychosocial problems. Family support is mentioned in international guidelines and definitions related to palliative care however, the recommendations do not define a specific course of action. This review aims to identify methods of family support in palliative care. Methods: Quasi-systematic review; search strategy: PubMed and Scopus were searched utilizing selected MeSH terms. Results: A total of 18 sources were included in the review. The literature identifies supportive interventions for families and caregivers of seriously ill patients. There is a proof that professional psychological approach e.g. cognitive therapy may be more successful than the other types of support provided by medical professionals who are not psychologists. Another observation is that support groups seem to be a valuable contribution to the mental health of caregivers. On the other hand, families observed an unsatisfying level of communication between them and healthcare professionals, as well as the limited time for these interactions. Conclusions: The literature identifies that there are different educational, psychosocial, and organizational approaches to family support. The impact of each supportive method on caregivers’ well-being was diverse, interventions were not equally effective. Nevertheless, all approaches reduced depressive symptoms and mitigated negative health effects on families, thereby there is an important value in developing this area of palliative care.
Keywords: family supportpalliative carepatients
References
- Sepúlveda C, Marlin A, Yoshida T, et al. Palliative care: the World Health Organization's global perspective. J Pain Symptom Manage. 2002; 24(2): 91–96.
- Palliative care. https://www.who.int/news-room/fact-sheets/detail/palliative-care (14.04.2024).
- Radbruch L, Payne SA. White paper on standards and norms for hospice and palliative care in Europe: Part 1. Eur J Palliat Care. 2010; 17: 22–33.
- Payne S, Harding A, Williams T, et al. Revised recommendations on standards and norms for palliative care in Europe from the European Association for Palliative Care (EAPC): a Delphi study. Palliat Med. 2022; 36(4): 680–697.
- Radbruch L, De Lima L, Knaul F, et al. Redefining palliative care — a new consensus — based definition. J Pain Symptom Manage. 2020; 60(4): 754–764.
- Leppert W, Grądalski T, Kotlińska-Lemieszek A, et al. Organizational standards for specialist palliative care for adult patients: recommendations of the expert group of national consultants in palliative medicine and palliative care nursing. Palliat Med Pract. 2022; 16(1): 7–26.
- Mikulska M. Bereavement support group program as a form of professional psychological help for the mourner. Psychoonkologia. 2017; 21(2): 66–73.
- Europejskie Towarzystwo Opieki Paliatywnej. [Raport dotyczący standardów i norm dla opieki hospicyjnej i paliatywnej w Europie: część 2]. Med Palliat Prakt. 2010; 4(2): 54–65.
- Hudson PL, Remedios C, Thomas K. A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliat Care. 2010; 9(1): 17.
- Rietjens JAC, Sudore RL, Connolly M, et al. Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017; 18(9): e543–e551.
- Kishino M, Ellis-Smith C, Afolabi O, et al. Family involvement in advance care planning for people living with advanced cancer: a systematic mixed-methods review. Palliat Med. 2022; 36(3): 462–477.
- Stolc B, Kleczewska A, Kulak M, et al. Edmonton Frail Scale — caregiver is a reliable source of information about the functional status of a hospitalized elderly patient. Eur J Transl Clin Med. 2024; 7(1): 16–21.
- Areia NP, Góngora JN, Major S, et al. Support interventions for families of people with terminal cancer in palliative care. Palliat Support Care. 2020; 18(5): 580–588.
- Wan A, Lung E, Ankita A, et al. Support for informal caregivers in Canada: a scoping review from a hospice and palliative/end-of-life care lens. J Palliat Care. 2022; 37(3): 410–418.
- Lundberg T, Olsson M, Fürst CJ. The perspectives of bereaved family members on their experiences of support in palliative care. Int J Palliat Nurs. 2013; 19(6): 282–288.
- Kustanti CY, Fang HF, Linda Kang X, et al. The effectiveness of bereavement support for adult family caregivers in palliative care: a meta-analysis of randomized controlled trials. J Nurs Scholarsh. 2021; 53(2): 208–217.
- Farabelli JP, Kimberly SM, Altilio T, et al. Top ten tips palliative care clinicians should know about psychosocial and family support. J Palliat Med. 2020; 23(2): 280–286.
- Mowll J. The bereavement experiences and support needs of bereaved family caregivers in the context of palliative care. Bereavement Care. 2018; 37(2): 74–77.
- Del Gaudio F, Zaider TI, Brier M, et al. Challenges in providing family — centered support to families in palliative care. Palliat Med. 2012; 26(8): 1025–1033.
- Kristjanson LJ, White K. Clinical support for families in the palliative care phase of hematologic or oncologic illness. Hematol Oncol Clin North Am. 2002; 16(3): 745–762.
- Milberg A, Rydstrand K, Helander L, et al. Participants' experiences of a support group intervention for family members during ongoing palliative home care. J Palliat Care. 2005; 21(4): 277–284.
- Henriksson A, Benzein E, Ternestedt BM, et al. Meeting needs of family members of persons with life-threatening illness: a support group program during ongoing palliative care. Palliat Support Care. 2011; 9(3): 263–271.
- Soikkeli-Jalonen A, Mishina K, Virtanen H, et al. Healthcare professionals' perceptions of psychosocial support for family members in palliative care inpatient units-A qualitative descriptive study. Nurs Open. 2023; 10(5): 3018–3027.
- Haan MM, van Gurp JLp, Knippenberg M, et al. Facilitators and barriers in using comics to support family caregivers of patients receiving palliative care at home: a qualitative study. Palliat Med. 2022; 36(6): 994–1005.
- Cain R, MacLean M, Sellick S. Giving support and getting help: informal caregivers' experiences with palliative care services. Palliat Support Care. 2004; 2(3): 265–272.
- Aoun SM, Rumbold B, Howting D, et al. Bereavement support for family caregivers: the gap between guidelines and practice in palliative care. PLoS One. 2017; 12(10): e0184750.
- Guldin MB, Vedsted P, Zachariae R, et al. Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: a longitudinal cohort study. Support Care Cancer. 2012; 20(8): 1679–1685.
- Chung A, Collier A, Gott M. Community-led and/or focused initiatives to support family carers within a palliative care context: an integrative review. Palliat Med. 2019; 33(2): 250–256.
- Belletti M, Mallia L, Lucidi F, et al. Complementary therapy and support services for formal and informal caregivers in Italian palliative care hospices: an exploratory and descriptive study. Support Care Cancer. 2011; 19(12): 1939–1947.
- Hudson P, Remedios C, Zordan R, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012; 15(6): 696–702.
