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Patients' experiences of care and support at home after a family member's participation in an intervention during palliative care

  • Maria Norinder (a1) (a2), Ida Goliath (a3) (a4) and Anette Alvariza (a1) (a2) (a5)

Patients who receive palliative home care are in need of support from family members, who take on great responsibility related to caregiving but who often feel unprepared for this task. Increasing numbers of interventions aimed at supporting family members in palliative care have been described and evaluated. It is not known whether and how these interventions actually affect the care or support provided to a patient, even though it has been suggested that family members would be likely to provide better care and support and thus allow for positive experiences for patients. However, this has not been studied from the perspective of the patients themselves. The objective of our study was to explore patients' experiences of care and support at home after family members' participation in a psychoeducational intervention during palliative care.


Our study took a qualitative approach, and interviews were conducted with 11 patients whose family members had participated in a psychoeducational intervention during palliative home care. The interviews were analyzed employing interpretive description.


Patients' experiences were represented by three themes: “safe at home,” “facilitated and more honest communication,” and “feeling like a unit of care.” Patients felt that their needs were better met and that family members became more confident at home without risking their own health. Patients felt relieved when family members were given the opportunity to talk and reflect with others and hoped that the intervention would contribute to more honest communications between themselves and their family members. Further, it was of great importance to patients that family members receive attention from and be confirmed and supported by healthcare professionals.

Significance of results:

Our findings show how an intervention targeted at family members during palliative home care also benefits the patients.

Corresponding author
Address correspondence and reprint requests to Anette Alvariza (formerly Henriksson), Ersta Sköndal University College, Box 11189, SE-10061 Stockholm, Sweden. E-mail:
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Andershed, B. (2006). Relatives in end-of-life care, part 1: A systematic review of the literature the five last years, January 1999–February 2004. Journal of Clinical Nursing, 15(9), 11581169. Available from
Andershed, B. & Ternestedt, B.M. (2001). Development of a theoretical framework describing relatives' involvement in palliative care. Journal of Advanced Nursing, 34(4), 554562.
Aranda, S.K. & Hayman-White, K. (2001). Home caregivers of the person with advanced cancer: An Australian perspective. Cancer Nursing, 24(4), 300307.
Candy, B., Jones, L., Drake, R., et al. (2011). Interventions for supporting informal caregivers of patients in the terminal phase of a disease. The Cochrane Database of Systematic Reviews, 6, CD007617. Available from
Carlander, I., Sahlberg-Blom, E., Hellström, I., et al. (2011). The modified self: Family caregivers' experiences of caring for a dying family member at home. Journal of Clinical Nursing, 20(7–8), 10971105. Epub ahead of print Oct 12, 2010. Available from
Eriksson, M. & Andershed, B. (2008). Care dependence: A struggle towards moments of respite. Clinical Nursing Research, 17(3), 220236.
Funk, L., Stajduhar, K.I., Toye, C., et al. (2010). Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research 1998–2008. Palliative Medicine, 24(6), 594607. Available from
Gomes, B., Higginson, I.J., Calanzani, N., et al. (2012). Preferences for place of death if faced with advanced cancer: A population survey in England, Flanders, Germany, Italy, The Netherlands, Portugal and Spain. Annals of Oncology, 23(8), 20062015. Epub ahead of print Feb 16. Available from
Håkanson, C., Öhlén, J., Morin, L., et al. (2015). A population-level study of place of death and associated factors in Sweden. Scandinavian Journal of Public Health, 43(7), 744751. Epub ahead of print Jul 20. Available from
Hardy, B., King, N. & Rodriquez, A. (2014). The experience of patients and carers in the daily management of care at the end of life. International Journal of Palliative Nursing, 20(12), 591598. Available from
Henriksson, A., Årestedt, K., Benzein, E., et al. (2012). Effects of a support group programme for family member patients with life-threatening illness during ongoing palliative care. Palliative Medicine, 27(3), 257264. Epub ahead of print May 4. Available from
Hinton, J. (1998). An assessment of open communication between people with terminal cancer, caring relatives, and others during home care. Journal of Palliative Care, 14(3). 1523.
Holm, M., Årestedt, K., Carlander, I., et al. (2015 a). Short-term and long-term effects of a psycho-educational group intervention for family caregivers in palliative home care: Results from a randomized control trial. Psycho-Oncology, 25(7), 795802. Epub ahead of print Oct 9. Available from
Holm, M., Årestedt, K., Carlander, I., et al. (2015 b). Delivering and participating in a psycho-educational intervention for family caregivers during palliative home care: A qualitative study from the perspective of health professionals and family caregivers. BMC Palliative Care, 14, 16. Available from
Hudson, P. & Payne, S. (2009). The future of family caregiving: Research, social policy and clinical practice. In Family carers in palliative care: A guide for health and social care professionals. Hudson, P. & Payne, S. (eds.), pp. 277305. New York: Oxford University Press.
Hudson, P., Trauer, T., Kelly, B., et al. (2015). Reducing the psychological distress of family caregivers of home-based palliative care patients: Longer-term effect from a randomised controlled trial. Psycho-Oncology, 24, 1924. Available from
Janze, A. & Henriksson, A. (2014). Preparing for palliative caregiving as a transition in the awareness of death: Family carer experiences. International Journal of Palliative Nursing, 20(10), 494501. Available from
Kahn, S.A., Gomes, B. & Higginson, I.G. (2014). End-of-life care: What do cancer patients want? Nature Reviews . Clinical Oncology, 11(2), 100108. Epub ahead of print Nov 26, 2013. Available from
Linderholm, M. & Friedrichsen, M. (2010). A desire to be seen: Family caregivers' experiences of their caring role in palliative home care. Cancer Nursing, 33(1), 2836. Available from'_Experiences_of_Their_Caring_Role_in_Palliative_Home_Care.
Lloyd-Williams, M., Kennedy, V., Sixsmith, A., et al. (2007). The end of life: A qualitative study of the perceptions of people over the age 80 on issues surrounding death and dying. Journal of Pain and Symptom Management, 34 (1), 6066. Epub ahead of print May 25. Available from
MacConigley, R., Halkett, G., Lobb, E., et al. (2010). Caring for someone with high-grade glioma: A time of rapid change for caregivers. Palliative Medicine, 24(5), 473479. Epub ahead of print Feb 1. Available from
Maguire, R., Papadopoulou, C., Kotronoulas, G., et al. (2013). A systematic review of supportive care needs of people living with lung cancer. European Journal of Oncology Nursing, 17(4), 449464. Epub ahead of print Dec 14, 2012. Available from
McCarthy, I. & Dowling, M. (2009). Living with a diagnosis of non-small-cell lung cancer: Patients' lived experiences. International Journal of Palliative Nursing, 15(12), 579587. Available from
McPherson, J.C., Wilson, G.K. & Murray, A.M. (2007). Feeling like a burden: Exploring the perspectives of patients at the end of life. Social Science & Medicine, 64(2), 417427. Epub ahead of print Oct 27, 2006. Available from
Milberg, A., Wåhlberg, R. & Krevers, B. (2014). Patients' sense of support within the family in the palliative care context: What are the influencing factors? Psycho-Oncology, 23(12), 13401349. Epub ahead of print May 13. Available from
Northouse, L., Katapodi, M., Song, L., et al. (2010). Interventions with family caregivers of cancer patients: Meta-analysis of randomized trials. CA: A Cancer Journal for Clinicians, 60(5), 317339. Epub ahead of print Aug 13. Available from
Öhlén, J., Wallengren-Gustafsson, C. & Friberg, F. (2013). Making sense of receiving palliative treatment. Cancer Nursing, 36(4), 265273. Available from
Pivodic, L., Pardon, K., Morin, L., et al. (2016). Place of death in the population dying from diseases indicative of palliative care need: A cross-national population-level study in 14 countries. Journal of Epidemiology and Community Health, 70, 1724. Available from
Refsgaard, B. & Frederiksen, K. (2013). Illness-related emotional experiences of patients living with incurable lung cancer. Cancer Nursing, 36(3), 221228. Available from
Stajduhar, K. & Cohen, R. (2009). Family caregiving in the home. In Family carers in palliative care: A guide for health and social care professionals, Hudson, P. & Payne, S. (eds.), pp. 149168. New York: Oxford University Press.
Stroebe, M. & Schut, H. (2015). Family matters in bereavement: Toward an integrative intra-interpersonal coping model. Perspectives on Psychological Science, 10(6), 873879. Available from
Tishelman, C., Lovgren, M., Broberger, E., et al. (2010). Are the most distressing concerns of patients with inoperable lung cancer adequately assessed? A mixed-methods analysis. Journal of Clinical Oncology, 28(11), 19421949. Epub ahead of print Mar 8. Available from
Thorne, S. (2008). Interpretive description. Walnut Creek, CA: Left Coast Press.
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Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
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