Hostname: page-component-586b7cd67f-t7fkt Total loading time: 0 Render date: 2024-11-23T23:47:33.176Z Has data issue: false hasContentIssue false

Family caregiver grief and post-loss adjustment: A longitudinal cohort study

Published online by Cambridge University Press:  24 June 2021

Alexandra Coelho*
Affiliation:
Clínica Universitária de Psiquiatria e Psicologia Médica, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal
Magda Roberto
Affiliation:
CICPSI, Faculdade de Psicologia, Universidade de Lisboa, Lisboa, Portugal
Luísa Barros
Affiliation:
CICPSI, Faculdade de Psicologia, Universidade de Lisboa, Lisboa, Portugal
António Barbosa
Affiliation:
Clínica Universitária de Psiquiatria e Psicologia Médica, Faculdade de Medicina, Universidade de Lisboa, Lisboa, Portugal Centro Hospitalar Universitário Lisboa Norte, Lisboa, Portugal
*
Author for correspondence: Alexandra Coelho, Av. Prof. Egas Moniz s/n, 1649-035 Lisboa, Portugal. E-mail: alexandra.moura.coelho@gmail.com

Abstract

Objective

In order to better understand the different grieving trajectories of the family caregivers (FCs), this study aims to examine the evolution of prolonged grief disorder (PGD) symptoms and the predictive role of the caregiving-related factors in the FCs' grieving trajectory from pre- to post-death.

Method

A prospective cohort study was carried out with advanced cancer FCs evaluated before death (T1) and 6–12 months post-loss (T2).

Results

Participants in T1 (n = 156) were mostly female, adult child, or spouse of the care recipient, with a mean age of 51.78 (SD = 13.29). At T2, 87 FCs participated in the survey. PGD prevalence was higher pre-death (38.6%) than in bereavement (33.7%). Of those who met the PGD criteria before death, most also met these criteria after death (n = 26, 61.9%). Psychological distress and caregiver burden were highly correlated with pre-death grief, which in turn played a critical role in mediating the link between psychological distress and bereavement outcome. Great emotional closeness in the relationship was predictive of PGD symptoms persistence. In contrast, the long-term consequences of caregiver burden were not confirmed.

Significance of results

This study provides evidence for the diversity of individual FC responses and the complex pattern of interactions between caregiving-related factors, relationship quality, and PGD symptoms evolution from pre- to post-death.

Type
Original 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

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), 18.Google ScholarPubMed
Bass, DM and Bowman, K (1990) The transition from caregiving to bereavement: The relationship of care-related strain and adjustment to death. The Gerontologist 30(1), 3542.CrossRefGoogle ScholarPubMed
Bastianelli, A, Gius, E and Cipolletta, S (2016) Changes over time in the quality of life, prolonged grief and family strain of family caregivers of patients in vegetative state: A pilot study. Journal of Health Psychology 21(5), 844852. http://dx.doi.org/10.1177/1359105314539533.CrossRefGoogle ScholarPubMed
Bernard, LL and Guarnaccia, CA (2003) Two models of caregiver strain and bereavement adjustment: A comparison of husband and daughter caregivers of breast cancer hospice patients. The Gerontologist 43(6), 808816.CrossRefGoogle ScholarPubMed
Bindley, K, Lewis, J, Travaglia, J, et al. (2019) Disadvantaged and disenfranchised in bereavement: A scoping review of social and structural inequity following expected death. Social Science & Medicine 242, 112599.CrossRefGoogle ScholarPubMed
Boerner, K and Schulz, R (2009) Caregiving, bereavement and complicated grief. Bereavement Care 28(3), 1013.CrossRefGoogle ScholarPubMed
Bonanno, GA, Wortman, CB, Lehman, DR, et al. (2002) Resilience to loss and chronic grief: A prospective study from preloss to 18-months postloss. Journal of Personality and Social Psychology 83(5), 1150.CrossRefGoogle ScholarPubMed
Breen, LJ, Aoun, SM, O'Connor, M, et al. (2019) Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study. Palliative Medicine 34(1), 145154.CrossRefGoogle ScholarPubMed
Canavarro, MCS (1999) Inventário de sintomas psicopatológicos - BSI. In Simões, MR, Gonçalves, MM & Almeida, LS (eds.), Testes e provas psicológicas em Portugal [Tests and psychological instruments in Portugal] (Vol. II, pp. 95109). Braga, Portugal: APPORT/SHO.Google Scholar
Carr, D, House, JS, Kessler, RC, et al. (2000) Marital quality and psychological adjustment to widowhood among older adults: A longitudinal analysis. The Journals of Gerontology: Series B 55(4), 197207.CrossRefGoogle ScholarPubMed
Chentsova-Dutton, Y, Shucter, S, Hutchin, S, et al. (2002) Depression and grief reactions in hospice caregivers: From pre-death to 1 year afterwards. Journal of Affective Disorders 69(1), 5360.CrossRefGoogle ScholarPubMed
Coelho, A, Delalibera, M, Barbosa, A, et al. (2015) Prolonged grief in palliative family caregivers: A pilot study in a Portuguese sample. OMEGA - Journal of Death and Dying 72(2), 151164.CrossRefGoogle Scholar
Coelho, A, Silva, C and Barbosa, A (2017) Portuguese validation of the Prolonged Grief Disorder Questionnaire–Predeath (PG–12): Psychometric properties and correlates. Palliative and Supportive Care 15(5), 544553. http://dx.doi.org/10.1017/S1478951516001000.CrossRefGoogle ScholarPubMed
Delalibera, M, Coelho, A and Barbosa, A (2011) Validation of prolonged grief disorder instrument for Portuguese population. Acta Médica portuguesa 24, 935942.Google ScholarPubMed
Delalibera, M, Coelho, A, Frade, P, et al. (2020) Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal. Transcultural Psychiatry 57(3), 445454.CrossRefGoogle ScholarPubMed
Derogatis, LR and Melisaratos, N (1983) The Brief Symptom Inventory: an introductory report. Psychological Medicine 13(3), 595605. http://dx.doi.org/10.1017/S0033291700048017.CrossRefGoogle Scholar
Dyregrov, A, Frykholm, AM, Lilled, L, et al. (2003) The Göteborg discotheque fire, 1998. Scandinavian Journal of Psychology 44, 449457.CrossRefGoogle Scholar
Ferrario, SR, Cardillo, V, Vicario, F, et al. (2004) Advanced cancer at home: Caregiving and bereavement. Palliative Medicine 18(2), 129136.CrossRefGoogle Scholar
Ferreira, F, Pinto, A, Laranjeira, A, et al. (2010) Validação da escala de Zarit: sobrecarga do cuidador em cuidados paliativos domiciliários, para população portuguesa. Cadernos de Saúde 3(2), 1319.Google Scholar
Francis, LE, Worthington, J, Kypriotakis, G, et al. (2010) Relationship quality and burden among caregivers for late-stage cancer patients. Supportive Care in Cancer 18(11), 14291436.CrossRefGoogle ScholarPubMed
Ghesquiere, A, Martí, YM and Shear, MK (2011) Risks for complicated grief in family caregivers. Journal of Social Work in End-Of-Life & Palliative Care 7(2–3), 216240. http://dx.doi.org/10.1080/15524256.2011.593158.CrossRefGoogle ScholarPubMed
Große, J, Treml, J and Kersting, A (2018) Impact of caregiver burden on mental health in bereaved caregivers of cancer patients: A systematic review. Psycho-Oncology 27(3), 757767.CrossRefGoogle ScholarPubMed
Guldin, MB, Vedsted, P, Zachariae, R, et al. (2012) Complicated grief and need for professional support in family caregivers of cancer patients in palliative care: A longitudinal cohort study. Supportive Care in Cancer 20(8), 16791685.CrossRefGoogle ScholarPubMed
Holm, M, Årestedt, K, Öhlen, J, et al. (2019) Variations in grief, anxiety, depression, and health among family caregivers before and after the death of a close person in the context of palliative home care. Death Studies 44(9), 531539.CrossRefGoogle ScholarPubMed
Hudson, PL, Thomas, K, Trauer, T, et al. (2011) Psychological and social profile of family caregivers on commencement of palliative care. Journal of Pain and Symptom Management 41(3), 522534.CrossRefGoogle 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), 696702.CrossRefGoogle ScholarPubMed
Kapari, M, Addington-Hall, J and Hotopf, M (2010) Risk factors for common mental disorder in caregiving and bereavement. Journal of Pain and Symptom Management 40(6), 844856.CrossRefGoogle ScholarPubMed
Kelly, B, Edwards, P, Synott, R, et al. (1999) Predictors of bereavement outcome for family carers of cancer patients. Psycho-Oncology 8(3), 237249.3.0.CO;2-C>CrossRefGoogle ScholarPubMed
Kiely, DK, Prigerson, H and Mitchell, SL (2008) Health care proxy grief symptoms before the death of nursing home residents with advanced dementia. The American Journal of Geriatric Psychiatry 16(8), 664673.CrossRefGoogle ScholarPubMed
Liew, TM (2016) Applicability of the pre-death grief concept to dementia family caregivers in Asia. International Journal of Geriatric Psychiatry 31(7), 749754. http://dx.doi.org/10.1002/gps.4387.CrossRefGoogle ScholarPubMed
Meijer, RR, de Vries, RM and van Bruggen, V (2011) An evaluation of the Brief Symptom Inventory–18 using item response theory: Which items are most strongly related to psychological distress?. Psychological Assessment 23(1), 193202. http://dx.doi.org/10.1037/a0021292.CrossRefGoogle ScholarPubMed
Meñaca, A, Evans, N, Andrew, EV, et al. (2012) End-of-life care across Southern Europe: A critical review of cultural similarities and differences between Italy, Spain and Portugal. Critical Review Oncology Hematology 82(3), 387401.CrossRefGoogle Scholar
Nielsen, MK, Neergaard, MA, Jensen, AB, et al. (2016) Do we need to change our understanding of anticipatory grief in caregivers? A systematic review of caregiver studies during end-of-life caregiving and bereavement. Clinical Psychology Review 44, 7593.CrossRefGoogle ScholarPubMed
Nielsen, MK, Neergaard, MA, Jensen, AB, et al. (2017) Predictors of complicated grief and depression in bereaved caregivers: A nationwide prospective cohort study. Journal of Pain and Symptom Management 53(3), 540550.CrossRefGoogle ScholarPubMed
Oechsle, K, Ullrich, A, Marx, G, et al. (2019) Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care. BMC Palliative Care 18(1), 102.CrossRefGoogle ScholarPubMed
Parkes, CM and Weiss, RS (1983) Recovery from Bereavement. New York: Basic Books.Google Scholar
Perpiña-Galvañ, J, Orts-Beneito, N, Fernandez-Alcantara, M, et al. (2019) Level of burden and health-related quality of life in caregivers of palliative care patients. International Journal of Environmental Research and Public Health 16(23), 48064819.CrossRefGoogle ScholarPubMed
Prigerson, HG, Horowitz, MJ, Jacobs, SC, et al. (2009) Prolonged grief disorder: Psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Medicine 10(12), 10.1371/annotation/a1d91e0d-981f-4674-926c-0fbd2463b5ea.Google Scholar
Prigerson, HG, Boelen, PA, Xu, J, et al. (2021) Validation of the new DSM-5-TR criteria for prolonged grief disorder and the PG-13-revised (PG-13-R) scale. World Psychiatry 20(1), 96106.CrossRefGoogle ScholarPubMed
Pruchno, RA, Cartwright, FP and Wilson-Genderson, M (2009) Effects of marital closeness on the transition from caregiving to widowhood. Aging and Mental Health 13(6), 808817.CrossRefGoogle ScholarPubMed
Reblin, M, Donaldson, G, Ellington, L, et al. (2016) Spouse cancer caregivers’ burden and distress at entry to home hospice: The role of relationship quality. Journal of Social and Personal Relationships 33(5), 666686.CrossRefGoogle ScholarPubMed
Rickerson, EM, Somers, C, Allen, CM, et al. (2005) How well are we caring for caregivers? Prevalence of grief-related symptoms and need for bereavement support among long-term care staff. Journal of Pain and Symptom Management 30(3), 227233.CrossRefGoogle ScholarPubMed
Schulz, R, Boerner, K and Hebert, RS (2008) Caregiving and bereavement. In Stroebe, M, Hansson, R, Schut, H, et al. (eds.), Handbook of Bereavement Research and Practice: Advances in Theory and Intervention. Washington, DC: American Psychological Association, pp. 265285.CrossRefGoogle Scholar
Servaty-Seib, HL and Pistole, MC (2007) Adolescent grief: Relationship category and emotional closeness. OMEGA - Journal of Death and Dying 54(2), 147167.CrossRefGoogle Scholar
Smigelsky, MA, Bottomley, JS, Relyea, G, et al. (2020) Investigating risk for grief severity: Attachment to the deceased and relationship quality. Death Studies 44(7), 402411. http://dx.doi.org/10.1080/07481187.2018.1548539.CrossRefGoogle Scholar
Spaid, WM and Barusch, A (1994) Emotional closeness and caregiver burden in the marital relationship. Journal of Gerontological Social Work 21(3-4), 197212.CrossRefGoogle Scholar
Tang, ST, Chang, WC, Chen, JS, et al. (2013) Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death. Psycho-Oncology 22(6), 13121318.CrossRefGoogle ScholarPubMed
Thomas, K, Hudson, P, Trauer, T, et al. (2014) Risk factors for developing prolonged grief during bereavement in family carers of cancer patients in palliative care: A longitudinal study. Journal of Pain and Symptom Management 47(3), 531541.CrossRefGoogle ScholarPubMed
Tough, H, Brinkhof, MW, Siegrist, J, et al. (2017) Subjective caregiver burden and caregiver satisfaction: The role of partner relationship quality and reciprocity. Archives of Physical Medicine and Rehabilitation 98(10), 20422051.CrossRefGoogle ScholarPubMed
Tsai, WI, Prigerson, HG, Li, CY, et al. (2016) Longitudinal changes and predictors of prolonged grief for bereaved family caregivers over the first 2 years after the terminally ill cancer patient's death. Palliative Medicine 30(5), 495503.CrossRefGoogle ScholarPubMed
Washington, KT, Parker, OD, Smith, JB, et al. (2018) Sleep problems, anxiety, and global self-rated health among hospice family caregivers. American Journal of Hospice and Palliative Care 35(2), 244249.CrossRefGoogle ScholarPubMed
Williams, AL and McCorkle, R (2011) Cancer family caregivers during the palliative, hospice, and bereavement phases: A review of the descriptive psychosocial literature. Palliative and Supportive Care 9(3), 315325.CrossRefGoogle ScholarPubMed
Williams, AL, Tisch, AJ, Dixon, J, et al. (2013) Factors associated with depressive symptoms in cancer family caregivers of patients receiving chemotherapy. Supportive Care in Cancer 21(9), 23872394.CrossRefGoogle ScholarPubMed
World Health Organization (2018). ICD-11 Beta Draft (Mortality and Morbidity Statistics). Retrieved April 20, 2018, from https://icd.who.int/dev11/l-m/enGoogle Scholar
Zarit, H and Zarit, J M (1987) Instructions for the Burden Interview. Technical Document, University Park, Pennsylvania State University.Google Scholar
Zordan, RD, Bell, ML, Price, M, et al. (2019) Long-term prevalence and predictors of prolonged grief disorder amongst bereaved cancer caregivers: A cohort study. Palliative and Supportive Care, 18. doi: 10.1017/S1478951518001013.Google ScholarPubMed
Zubaidi, ZS, Ariffin, F, Oun, TC, et al. (2020) Caregiver burden among informal caregivers in the largest specialized palliative care unit in Malaysia: A cross sectional study. BMC Palliative Care 19(1), 115.Google Scholar