Hostname: page-component-78c5997874-v9fdk Total loading time: 0 Render date: 2024-11-19T19:32:15.844Z Has data issue: false hasContentIssue false
  • English
  • Français

Support interventions for families of people with terminal cancer in palliative care

Published online by Cambridge University Press:  26 February 2020

Neide P. Areia Open the ORCID record for Neide P. Areia [Opens in a new window] ,
José N. Góngora ,
Sofia Major ,
Vivianne D. Oliveira  and
Ana P. Relvas
Neide P. Areia*
Affiliation:
Centre for Social Studies, University of Coimbra, Coimbra, Portugal
José N. Góngora
Affiliation:
Faculty of Psychology, University of Salamanca, Salamanca, Spain
Sofia Major
Affiliation:
Centre for Social Studies, University of Coimbra, Coimbra, Portugal Faculty of Social Sciences and Humanities, University of Azores, Azores, Portugal
Vivianne D. Oliveira
Affiliation:
Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal
Ana P. Relvas
Affiliation:
Centre for Social Studies, University of Coimbra, Coimbra, Portugal Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal
*
Author for correspondence: Neide P. Areia, Centre for Social Studies of the University of Coimbra, Colégio de S. Jerónimo, Apartado 3087, 3000-995Coimbra, Portugal. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

The terminal phase of cancer represents a major crisis for the family system. Regardless of the caregiving role they undertake, family members are forced to address multiple impacts when facing the approaching death of their terminally ill loved one. International guidelines recognize the importance of integrating the family into a care plan. However, more needs to be known about how to deliver optimal family support. The purpose of this study is to review the current state of the art in family/caregiver-focused interventions of people with terminal cancer in palliative care.

Method

For this purpose, an overview of the literature's systematic reviews on the topic was conducted to select Randomized Controlled Trials (RCTs) on family/caregiver-focused interventions.

Results

Nine interventions were found in the systematic reviews of literature and meta-analysis. These family/caregiver-focused interventions were then thoroughly and critically analyzed. Despite the heterogeneity with regard to their characteristics, the interventions commonly focused on caregiving matters, were brief in duration, and delivered by non-mental health experts. The efficacy of such interventions was seen as modest.

Significance of results

Family/caregiver-focused interventions in palliative care remain a matter of concern and more research is needed to identify adequate and effective ways of helping families that face the crisis of terminal illness in the system.

Keywords

CaregiverFamilyInterventionPalliative careTerminal cancer
Type
Review Article
Information
Palliative & Supportive Care , Volume 18 , Issue 5 , October 2020 , pp. 580 - 588
Check for updates
Copyright
Copyright © Cambridge University Press 2020

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

*Applebaum, AJ and Breitbart, W (2013) Care for the cancer caregiver: A systematic review. Palliative & Supportive Care 11(03), 231–252. doi:10.1017/s1478951512000594CrossRefGoogle ScholarPubMed
Areia, NP, Major, S and Relvas, AP (2017) Measuring family needs of people living with cancer. Portuguese validation and descriptive studies of the Family Inventory of Needs. European Journal of Oncology Nursing 30, 22–28. doi:10.1016/j.ejon.2017.07.005CrossRefGoogle Scholar
Areia, NP, Fonseca, G, Major, S, et al. (2019) Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors. Palliative & Supportive Care 17(03), 286–293. doi:10.1017/s1478951518000044CrossRefGoogle ScholarPubMed
Bonanno, G and Mancini, A (2006) Bereavement-related depression and PTSD. Evaluating interventions. In Barbanel, L and Sternberg, R (eds), Psychological Interventions in Times of Crisis. New York: Springer.Google Scholar
*Chi, N, Demiris, G, Lewis, F, et al. (2016) Behavioral and educational interventions to support family caregivers in end-of-life care: A systematic review. American Journal of Hospice and Palliative Medicine 33(9), 894–908. doi:10.1177/1049909115593938CrossRefGoogle ScholarPubMed
Chua, C, Wu, J, Wong, Y, et al. (2016) Caregiving and its resulting effects — The care study to evaluate the effects of caregiving on caregivers of patients with advanced cancer in Singapore. Cancers 8(11). doi:10.3390/cancers8110105CrossRefGoogle Scholar
Costa-Requena, G, Cristófol, R and Cañete, J (2012) Caregivers’ morbidity in palliative care unit: Predicting by gender, age, burden and self-esteem. Supportive Care in Cancer 20, 1465–1470. doi:10.1007/s00520-011-1233-6CrossRefGoogle ScholarPubMed
Dionne-Odom, JN, Azuero, A, Lyons, KD, et al. (2015) Benefits of early versus delayed palliative care to informal family caregivers of patients with advanced cancer: outcomes from the ENABLE III randomized controlled trial. Journal of Clinical Oncology 33(13), 1446–1452. doi:10.1200/jco.2014.58.7824CrossRefGoogle ScholarPubMed
Everstine, D and Everstine, L (2006) Strategic Interventions for People in Crisis, Trauma, and Disaster. New York: Routledge.Google Scholar
*Fu, F, Zhao, H, Tong, F, et al. (2017) A systematic review of psychosocial interventions to cancer caregivers. Frontiers in Psychology 8, 1–12. doi:10.3389/fpsyg.2017.00834CrossRefGoogle ScholarPubMed
Harding, R and Higginson, J (2003) What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine 17(1), 63–74. doi:10.1191/0269216303pm667oaCrossRefGoogle ScholarPubMed
*Harding, R, List, S, Epiphaniou, E, et al. (2011) How can informal caregivers in cancer and palliative care be supported? An updated systematic review of interventions and their effectiveness. Palliative Medicine 26(1), 7–22. doi:10.1177/0269216311409613CrossRefGoogle ScholarPubMed
Hudson, P and Payne, S (2011) Family caregivers and palliative care: Current status and agenda for the future. Journal of Palliative Medicine 14(7), 864–869. doi:10.1089/jpm.2010.0413CrossRefGoogle ScholarPubMed
Hudson, P, Aranda, S and Hayman-White, K (2005) A psycho-educational intervention for family caregivers of patients receiving palliative care: A randomized controlled trial. Journal of Pain and Symptom Management 30(4), 329–341. doi:10.1016/j.jpainsymman.2005.04.006CrossRefGoogle ScholarPubMed
*Hudson, P, Remedios, C and Thomas, K (2010) A systematic review of psychosocial interventions for family carers of palliative care patients. BMC Palliative Care 9, 17. doi:10.1186/1472-684X-9-17CrossRefGoogle ScholarPubMed
Hudson, P, Zordan, R and Trauer, T (2011) Research priorities associated with family caregivers in palliative care: International perspectives. Journal of Palliative Medicine 14(4), 397–401. doi:10.1089/jpm.2010.0345CrossRefGoogle ScholarPubMed
Hudson, P, Remedios, C, Zordan, R, et al. (2012) Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. Journal of Palliative Medicine 15(6), 696–702. doi:10.1089/jom.2011.0466CrossRefGoogle ScholarPubMed
Hudson, P, Trauer, T, Kelly, B, et al. (2013) Reducing the psychological distress of family caregivers of home-based palliative care patients: Short-term effects from a randomised controlled trial. Psycho-Oncology 22, 1987–1993. doi:10.1002/pon.3242CrossRefGoogle ScholarPubMed
Kayser, K, Watson, L and Andrade, J (2007) Cancer as a “we-disease”: Examining the process of coping from a relational perspective. Families, Systems and Health 25(4), 404–418. doi:10.1037/1091-7527.25.4.404CrossRefGoogle Scholar
Kissane, D and Bloch, S (2002) Family Focused Grief Therapy: A Model of Family-Centered Care During Palliative Care and Bereavement. London, UK: Open University Press.Google Scholar
Kissane, D, McKenzie, M, Bloch, S, et al. (2006) Family focused grief therapy: A randomized controlled trial in palliative and bereavement. American Journal of Psychiatry 163(7), 1208–1218.CrossRefGoogle ScholarPubMed
Li, L, Tian, J, Tian, H, et al. (2012) Quality and transparency of overviews of systematic reviews. Journal of Evidence-Based Medicine 5(3), 166–173. doi:10.1111/j.1756-5391.2012.01185.xCrossRefGoogle ScholarPubMed
Lunny, C, Brennan, SE, McDonald, S, et al. (2016) Evidence map of studies evaluating methods for conducting, interpreting and reporting overviews of systematic reviews of interventions: Rationale and design. Systematic Reviews 5(1), 1–8. doi:10.1186/s13643-015-0178-0CrossRefGoogle ScholarPubMed
McLean, LM, Walton, T, Rodin, G, et al. (2013) A couple-based intervention for patients and caregivers facing end-stage cancer: Outcomes of a randomized controlled trial. Psycho-Oncology 22(1), 28–38. doi:10.1002/pon.2046CrossRefGoogle ScholarPubMed
McMillan, S, Small, B, Weitzner, M, et al. (2005) Impact of coping skills intervention with family caregivers of hospice patients with cancer. A randomized clinical trial. Cancer 106(1), 214–222. doi:10.1002/cncr.21567CrossRefGoogle Scholar
Mitchell, GK, Girgis, A, Jiwa, M, et al. (2013) Providing general practice needs-based care for carers of people with advanced cancer: A randomised controlled trial. British Journal of General Practice 63(615), e683–e690. doi:10.3399/bjgp13X673694CrossRefGoogle ScholarPubMed
Moher, D, Liberati, A, Tetzlaff, J, et al. (2009) Preferred reporting items for systematic reviews and meta-analyses: The PRISMA statement. PLoS Medicine, 6(7), e1000097. doi:10.1371/journal.pmed.1000097CrossRefGoogle ScholarPubMed
Nielsen, M, Neergaard, M, Jensen, A, et al. (2016) Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: A nationwide population-based cohort study. Supportive Care in Cancer 24, 3057–3067. doi:10.1007/s00520-016-3120-7Google ScholarPubMed
Nipp, R, El-Jawahri, A, Fishbein, J, et al. (2016) Factors associated with depression and anxiety symptoms in family caregivers of patients with incurable cancer. Annals of Oncology 27(8), 1607–1612. doi:10.1093/annonc/mdw205CrossRefGoogle ScholarPubMed
Nissen, K, Trevino, K, Lange, T, et al. (2016) Family relationships and psychosocial dysfunction among family caregivers of patients with advanced cancer. Journal of Pain and Symptom Management 52(6), 841–849. doi:10.1016/j.jpainsymman.2016.07.006CrossRefGoogle ScholarPubMed
*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, 317–339. doi:10.3322/caac.20081Google ScholarPubMed
Northouse, LL, Mood, DW, Schafenacker, A, et al. (2013) Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psycho-Oncology 22(3), 555–563. doi:10.1002/pon.3036CrossRefGoogle ScholarPubMed
Rha, S, Park, Y, Song, S, et al. (2015) Caregiving burden and the quality of life of family caregivers of cancer patients: The relationship and correlates. European Journal of Oncology Nursing 19, 376–382. doi:10.1016/j.ejon.2015.01.004CrossRefGoogle ScholarPubMed
Rolland, J (2005) Cancer and the family: An integrative model. Cancer 104(Suppl 11), 2584–2595. doi:10.1002/cncr.21489CrossRefGoogle Scholar
Romito, F, Goldzweig, G, Cormio, C, et al. (2013) Informal caregiving for cancer patients. Cancer 119, 2160–2169. doi:10.1002/cncr.28057CrossRefGoogle ScholarPubMed
Smith, V, Devane, D, Begley, CM, et al. (2011) Methodology in conducting a systematic review of systematic reviews of healthcare interventions. BMC Medical Research Methodology 11(1), 1–6. doi:10.1186/1471-2288-11-15CrossRefGoogle ScholarPubMed
*Waldron, EA, Janke, EA, Bechtel, CF, et al. (2013) A systematic review of psychosocial interventions to improve cancer caregiver quality of life. Psycho-Oncology 22(6), 1200–1207. doi:10.1002/pon.3118CrossRefGoogle ScholarPubMed
Walsh, F and McGoldrick, M (2004) Loss and the family: Systemic perspective. In Walsh, F and McGoldrick, M (eds), Living Beyond Loss: Death in the Family, 2nd ed. New York: Norton & Company.Google Scholar
Walsh, K, Jones, L, Tookman, A, et al. (2007) Reducing emotional distress in people caring for patients receiving specialist palliative care. British Journal of Psychiatry 190, 142–147. doi:10.1192/bjp.bp.106.023960CrossRefGoogle ScholarPubMed
World Health Organization (WHO) (2002) National Cancer Control Programmes: Policies and Managerial, 2nd ed. Geneva, Switzerland: World Health Organization.Google Scholar
Supplementary material: File

Areia et al. supplementary material

Areia et al. supplementary material

Download Areia et al. supplementary material(File)
File 64.5 KB