Hostname: page-component-78c5997874-v9fdk Total loading time: 0 Render date: 2024-11-05T14:48:11.645Z Has data issue: false hasContentIssue false

Caring for people who take care: What is already done?

Published online by Cambridge University Press:  27 August 2021

Carolina Oliveira*
Affiliation:
Faculty of Psychology and Education Sciences, Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Gabriela Fonseca
Affiliation:
Faculty of Psychology and Education Sciences, Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Neide P. Areia
Affiliation:
Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Luciana Sotero
Affiliation:
Faculty of Psychology and Education Sciences, Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
Ana Paula Relvas
Affiliation:
Faculty of Psychology and Education Sciences, Centre for Social Studies (CES), University of Coimbra, Coimbra, Portugal
*
Author for correspondence: Carolina Oliveira, Faculty of Psychology and Education Sciences, University of Coimbra, Rua do Colégio Novo, 3001-802 Coimbra, Portugal. E-mail: [email protected]

Abstract

Objective

The growing prevalence and impact of cancer on the family system calls for a palliative care approach with the family as the unit of care. This study aimed at providing an overview of the intervention programs that have been developed to offer support to the family caregivers of oncologic patients receiving palliative care.

Method

Sixteen articles were included in the final review, encompassing (i) studies focused on intervention programs with family caregivers of cancer patients in palliative care, (ii) studies including a pre- and post-test evaluation of the intervention program, (iii) and studies whose cancer patients were at least 18 years old.

Results

A great heterogeneity was verified with respect to care settings, number of sessions, outcome measures, or timing of assessment within the reviewed programs. These findings mirrored the complexity of the palliative care approach, which is difficult to standardize. Nonetheless, some interventions with different features accomplished good and sometimes similar results. The studies’ main outcomes were clustered in five categories: psychological symptomatology, general quality of life, caregiving role, family relational variables, and bereavement/grief. Moreover, 44% of the main outcomes were psychological symptomatology of family caregivers, with an emphasis toward anxiety and depression. Also shown was a growing emergence of technology use among these interventions.

Significance of results

Results revealed a scarcity of family-oriented programs and lack of certified mental health professionals as interventionists. Future studies and interventions should focus on the positive outcomes of the caregiving experience and must acknowledge the cultural differences when trying to replicate programs. Considering that there is no precise formula for dealing with terminal illness and grief, we submit that family-centered and systemic lenses are excellent approaches for support during this adjustment process. In conclusion, the present study advocates for increased investment in the field, underscoring the importance of family caregivers’ mental health.

Type
Review Article
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

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

REFERENCES

*Ammari, ABH, Hendriksen, C and Rydahl-Hansen, S (2018) Results from the family and coping oriented palliative homecare intervention study (FamCope) – A randomized controlled trial. Journal of Psychosocial Oncology 36(5), 557581. doi:10.1080/07347332.2018.1460003CrossRefGoogle ScholarPubMed
Areia, NP, Major, S, Gaspar, C, et al. (2017a) Palliative oncology in hospice and home care: Needs, psychological morbidity and anticipatory grief on patient’ s relatives and impact on family quality of life. Psychologica 60(2), 2744. doi:10.14195/1647-8606_60-2_2Google Scholar
Areia, NP, Major, S, Relvas, AP (2017b) 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, 2228. doi:10.1016/j.ejon.2017.07.005CrossRefGoogle Scholar
Areia, NP, Fonseca, G, Major, S, et al. (2018) Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors. Palliative and Supportive Care 17(3), 286286. doi:10.1017/S1478951518000044CrossRefGoogle ScholarPubMed
Areia, NP, Góngora, JN, Major, S, et al. (2020) Support interventions for families of people with terminal cancer in palliative care. Palliative and Supportive Care, 19. doi:10.1017/S1478951520000127Google ScholarPubMed
*Badr, H, Smith, CB, Goldstein, NE, et al. (2015) Dyadic psychosocial intervention for advanced lung cancer patients and their family caregivers: Results of a randomized pilot trial. Cancer 121(1), 150158. doi:10.1002/cncr.29009CrossRefGoogle ScholarPubMed
Del Gaudio, F, Zaider, TI, Brier, M, et al. (2012) Challenges in providing family-centered support to families in palliative care. Palliative Medicine 26(8), 10251033. doi:10.1177/0269216311426919CrossRefGoogle ScholarPubMed
Edwards, B and Clarke, V (2004) The psychological impact of a cancer diagnosis on families: The influence of family functioning and patients’ illness characteristics on depression and anxiety. Psycho-Oncology 13(8), 562576. doi:10.1002/pon.773CrossRefGoogle ScholarPubMed
*Fegg, MJ, Brandstatter, M, Kogler, M, et al. (2013) Existential behavioural therapy for informal caregivers of palliative patients: A randomised controlled trial. Psycho-Oncology 22(9), 20792086. doi:10.1002/pon.3260CrossRefGoogle ScholarPubMed
Goldsmith, J, Wittenberg, E, Platt, CS, et al. (2016) Family caregiver communication in oncology: Advancing a typology. Psycho-Oncology 25, 463470. doi:10.1002/pon.3862CrossRefGoogle ScholarPubMed
Gonzalez, S, Steinglass, P and Reiss, D (1989) Putting the illness in its place: Discussion groups for families with chronic medical illnesses. Family Process 28(1), 6987.CrossRefGoogle ScholarPubMed
Govina, O, Kotronoulas, G, Mystakidou, K, et al. (2015) Effects of patient and personal demographic, clinical and psychosocial characteristics on the burden of family members caring for patients with advanced cancer in Greece. European Journal of Oncology Nursing 19, 8188. doi:10.1016/j.ejon.2014.06.009CrossRefGoogle Scholar
*Hudson, PL, 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), 329340. doi:10.1016/j.jpainsymman.2005.04.006CrossRefGoogle ScholarPubMed
Hudson, PL, 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
Hui, D, Hannon, BL, Zimmermann, C, et al. (2018) Improving patient and caregiver outcomes in oncology: Team-based, timely, and targeted palliative care. CA: A Cancer Journal for Clinicians 68(5), 356376. doi:10.3322/caac.21490Google ScholarPubMed
Kayser, K, Watson, LE and Andrade, JT (2007) Cancer as a “We-disease”: Examining the process of coping from a relational perspective. Families Systems & Health 25(4), 404418. doi:10.1037/1091-7527.25.4.404CrossRefGoogle Scholar
Kissane, D and Bloch, S (2002) Family Focused Grief Therapy: A Model of Family-Centred Care During Palliative Care and Bereavement. Buckingham, 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), 12081218.CrossRefGoogle ScholarPubMed
Klop, HT, de Veer, AJE, van Dongen, SI, et al. (2018) Palliative care for homeless people: A systematic review of the concerns, care needs and preferences, and the barriers and facilitators for providing palliative care. BMC Palliative Care 17(67), 116. doi:10.1186/s12904-018-0320-6CrossRefGoogle ScholarPubMed
Kreling, B, Selsky, C, Perret-Gentil, M, et al. (2010) “The worst thing about hospice is that they talk about death”: Contrasting hospice decisions and experience among immigrant Central and South American Latinos with US-born White, non-Latino cancer caregivers. Palliative Medicine 24(4), 427434. doi:10.1177/0269216310366605CrossRefGoogle ScholarPubMed
Kutner, J, Kilbourn, KM, Costenaro, A, et al. (2009) Support needs of informal hospice caregivers: A qualitative study. Journal of Palliative Medicine 12(12), 11011114. doi:10.1089/jpm.2009.0178CrossRefGoogle ScholarPubMed
Lee, K-C, Yiin, J-J and Chao, Y-F (2016) Effect of integrated caregiver support on caregiver burden for people taking care of people with cancer at the end of life: A cohort and quasi-experimental clinical trial. Taiwan International Journal of Nursing Studies 46, 1726. doi:10.1016/j.ijnurstu.2016.01.002CrossRefGoogle Scholar
*Leow, M, Chan, S and Chan, M (2015) A pilot randomized, controlled trial of the effectiveness of a psychoeducational intervention on family caregivers of patients with advanced cancer. Oncology Nursing Forum 42(2), E63E72. doi:10.1188/15.ONF.E63-E72CrossRefGoogle ScholarPubMed
Li, Q and Loke, AY (2013) The positive aspects of caregiving for cancer patients: A critical review of the literature and directions for future research. Psycho-Oncology 22, 23992407. doi:10.1002/pon.3311CrossRefGoogle ScholarPubMed
*Manne, S, Babb, J, Pinover, W, et al. (2004) Psychoeducational group intervention for wives of men with prostate cancer. Psycho-Oncology 13(1), 3746. doi:10.1002/pon.724CrossRefGoogle ScholarPubMed
McHugh, ML (2012) Interrater reliability: The kappa statistic. Biochemia Medica 22(3), 276282. doi:10.11613/BM.2012.031CrossRefGoogle ScholarPubMed
Moher, D, Hopewell, S, Schulz, KF, et al. (2010) Research methods & reporting. BMJ 340, 869. doi:10.1136/bmj.c869CrossRefGoogle ScholarPubMed
Moher, D, Shamseer, L, Clarke, M, et al. (2015) Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement. Systematic Reviews 4(1), 19. doi:10.1186/2046-4053-4-1CrossRefGoogle ScholarPubMed
*Mowll, J, Lobb, EA, Lane, L, et al. (2015) A preliminary study to develop an intervention to facilitate communication between couples in advanced cancer. Palliative & Supportive Care 13(5), 13811390. doi:10.1017/S1478951514001333CrossRefGoogle ScholarPubMed
*Nguyen, HQ, Ruel, N, Macias, M, et al. (2018) Translation and evaluation of a lung cancer, palliative care intervention for community practice. Journal of Pain and Symptom Management 56(5), 709718. doi:10.1016/j.jpainsymman.2018.07.018CrossRefGoogle ScholarPubMed
Northouse, L (2012) Helping patients and their family caregivers cope with cancer. Oncology Nursing Forum 39(5), 500506. doi:10.1188/12.ONF.500-506CrossRefGoogle ScholarPubMed
*Northouse, LL, Mood, DW, Schafenacker, A, et al. (2007) Randomized clinical trial of a family intervention for prostate cancer patients and their spouses. Cancer 110(12), 28092818. doi:10.1002/cncr.23114CrossRefGoogle 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, 317339. doi:10.3322/caac.20081Google ScholarPubMed
Relvas, AP (2006) O Ciclo vital da família: Perspectiva sistémica (4th ed.). Porto: Edições Afrontamento..Google Scholar
Rolland, JS (1987) Chronic illness and the life cycle: A conceptual framework. Family Process 26(203), 203221. doi:10.1111/j.1545-5300.1987.00203.xCrossRefGoogle ScholarPubMed
Rolland, JS (1994) Families, Illness, and Disability: An Integrative Treatment Model. New York: Basic Books.Google Scholar
Rolland, JS (2005) Cancer and the family: An integrative model. Cancer 104(11 Suppl.), 25842595. doi:10.1002/cncr.21489CrossRefGoogle Scholar
Rolland, JS (2018) Helping Couples and Families Navigate Illness and Disability: An Integrated Approach. New York: Guilford Press.Google Scholar
Rolland, JS and Walsh, F (2005) Systemic training for healthcare professionals: The Chicago center for family health approach. Family Process 44(3), 283301. doi:10.1111/j.1545-5300.2005.00060.xCrossRefGoogle ScholarPubMed
Salazar, H (Ed.) (2017) Intervenção Psicológica em Cuidados Paliativos. Lisboa: PACTOR.Google Scholar
*Schenker, Y, Bahary, N, Claxton, R, et al. (2018) A pilot trial of early specialty palliative care for patients with advanced pancreatic cancer: Challenges encountered and lessons learned. Journal of Palliative Medicine 21(1), 2836. doi:10.1089/jpm.2017.0113CrossRefGoogle ScholarPubMed
Shields, CG, Finley, MA, Chawla, N, et al. (2012) Couple and family interventions in health problems. Journal of Marital and Family Therapy 38(1), 265280. doi:10.1111/j.1752-0606.2011.00269.xCrossRefGoogle ScholarPubMed
*Sun, V, Grant, M, Koczywas, M, et al. (2015) Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer. Cancer 121(20), 37373745. doi:10.1002/cncr.29567CrossRefGoogle ScholarPubMed
*von Heymann-Horan, A, Timm, H, Guldin, M-B, et al. (2018) Effect of home-based specialised palliative care and dyadic psychological intervention on caregiver anxiety and depression: A randomised controlled trial. British Journal of Cancer 119(11), 13071315. doi:10.1038/s41416-018-0193-8CrossRefGoogle ScholarPubMed
Walsh, F (2016a) Applying a family resilience framework in training, practice, and research: Mastering the art of the possible. Family Process 55(4), 616632. doi:10.1111/famp.12260CrossRefGoogle Scholar
Walsh, F (2016b) Strengthening Family Resilience, 3rd ed. New York: Guilford Publications.Google Scholar
Walsh, F and McGoldrick, M (2013) Bereavement: A family life cycle perspective. Family Science 4(1), 2027. doi:10.1080/19424620.2013.819228CrossRefGoogle Scholar
*Walsh, K, Jones, L, Tookman, A, et al. (2007) Reducing emotional distress in people caring for patients receiving specialist palliative care: Randomised trial. British Journal of Psychiatry 190, 142147. doi:10.1192/bjp.bp.106.023960CrossRefGoogle ScholarPubMed
*Washington, KT, Demiris, G, Parker Oliver, D, et al. (2018) Delivering problem-solving therapy to family caregivers of people with cancer: A feasibility study in outpatient palliative care. Psycho-Oncology 27(10), 24942499. doi:10.1002/pon.4859CrossRefGoogle ScholarPubMed
World Health Organization (2002) National Cancer Control Programmes: Policies and Managerial, 2nd ed. Geneva: World Health Organization.Google Scholar
World Health Organization (2017) Guide to Cancer Early Diagnosis. Geneva: World Health Organization.Google Scholar
World Health Organization (2018) Integrating Palliative Care and Symptom Relief into Primary Health Care: A WHO Guide for Planners, Implementers and Managers. Geneva: World Health Organization.Google Scholar
Zigmond, A and Snaith, R (1983) The hospital anxiety and depression scale. Acta Psychiatrica Scandinavica 67(6), 361370.CrossRefGoogle ScholarPubMed
*Zimmermann, C, Ryan, S, Hannon, B, et al. (2019) Team-based outpatient early palliative care: A complex cancer intervention. BMJ Supportive & Palliative Care, 110. doi:10.1136/bmjspcare-2019-001903Google ScholarPubMed