Skip to main content

Psychological morbidity in family caregivers of people living with terminal cancer: Prevalence and predictors

  • Neide P. Areia (a1), Gabriela Fonseca (a1) (a2), Sofia Major (a1) (a2) and Ana P. Relvas (a1) (a2)

The issues surrounding a patient's terminal phase of cancer and the imminent death of the individual represent a major family crisis affecting all its members. The goal of this study was to assess the prevalence of psychological morbidity in family caregivers of persons with terminal cancer in terms of psychological distress, depression, anxiety, somatization, and complicated anticipatory grief, and to determine which factors may influence these responses.


One hundred and twelve family caregivers of individuals with terminal cancer completed an assessment protocol comprising the Brief Symptom Inventory (depression, anxiety, somatization, and a computed score for global distress), the Marwit-Meuser Caregiver Grief Inventory - Short Form (anticipatory grief), the Family Inventory of Needs (importance and satisfaction of needs), and the Systemic Clinical Outcome Routine Evaluation -15 (family functioning). Prevalence of psychological morbidity was determined through descriptive and frequency statistics. Predictors of psychological morbidity were ascertained through structural equation modelling methods.


Regarding the prevalence of psychological morbidity in family caregivers, 66.1% reported high levels of distress, 68.8% showed high risk of depression, 72.3% showed high risk of anxiety, 50.9% reported high levels of somatization, and 25.9% showed high risk of complicated anticipatory grief. It was found that the predictors of age, gender, relationship to the family member with terminal cancer, the caregiving role played (i.e., primary vs. nonprimary), the satisfaction of needs by healthcare professionals, and family functioning play an important role in terms of one's risk of developing psychological morbidity.

Significance of results

This study revealed an alarming prevalence of psychological morbidity in family caregivers of individuals living with terminal cancer, making it crucial to move forward from a patient-centered approach to a family-centrad approach to reduce the risk of family maladjustment when facing the imminent death of a family member and to prevent postdeath unadjusted responses.

Corresponding author
Author for correspondence: Neide P. Areia, Faculty of Psychology and Education Sciences, University of Coimbra, Rua do Colégio Novo, 3000-115 Coimbra, Portugal. E-mail:
Hide All
Areia, N, Major, S, and Relvas, P (2016 a) Family inventory of needs (FIN). Vulnerabilidade, stress e adaptação [Vulnerability, stress and adaptation], vol. II. Relvas, A and Major, S (eds.). pp. 105124. Coimbra: Imprensa da Universidade de Coimbra.
Areia, N, Major, S, and Relvas, P (2016 b) Marwit-Meuser Caregiver Grief Inventory - Short Form (MMCGI-SF). In Vulnerabilidade, stress e adaptação [Vulnerability, stress and adaptation], vol. II. Relvas, A and Major, S (eds.), pp. 125145. Coimbra: Imprensa da Universidade de Coimbra.
Burridge, L, Barnett, A, and Clavarino, A (2009) The impact of perceived stage of cancer on carers’ anxiety and depression during the patients’ final year of life. Psycho-Oncology 18, 615623.
Buzgová, R, Spatenková, N, Fukasová-Hajnová, E, et al. (2016) Assessing needs of family members of inpatients with advanced cancer. European Journal of Cancer Care 25(4), 592599.
Canavarro, MC (1999) Inventário de sintomas psicopatológicos: BSI [inventory of psychopathological symptoms: BSI]. In Testes e provas psicológicas em Portugal, Vol. 2, Simões, M, Gonçalves, M, and Almeida, L (eds.), pp 95109. Braga, Portugal: APPORT/SHO.
Canavarro, M, Nazaré, B, and Pereira, M (2017) BSI-18: Inventário de sintomas psicopatológicos. In Psicologia Clínica e da Saúde - Instrumentos de Avaliação, vol. III, Gonçalves, M, Simões, M, and Almeida, L (eds.). pp. 115130. Lisboa: Pactor.
Derogatis, L (2001) BSI 18 – Brief Symptom Inventory 18: Administration, scoring, and procedures manual. Minneapolis: MN: Pearson.
Fasse, L, Flahault, C, Brédart, A, et al. (2015) Describing and understanding depression in spouses of cancer patients in palliative phase. Psycho-Oncology 24, 11311137.
Fridriksdóttir, N, Saevarsdóttir, D, Halfdánardóttir, S, et al. (2011) Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression. Acta Oncologia 50, 252258.
Fridriksdottir, N, Sigursdardottir, V, and Gunnarsdottir, S (2006) Important needs of families in acute and palliative care settings assessed with the Family Inventory of Needs. Palliative Medicine 20, 425432.
Given, B, Wyatt, G, Given, C, et al. (2004) Burden and depression among caregivers of patients with cancer at the end of life. Oncology Nursing Forum 31(6), 11051115.
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.
Götze, H, Brähler, E, Gansera, L, et al. (2014) Psychological distress and quality of life of palliative cancer patients and their caring relatives during home care. Supportive Care in Cancer 22, 27752782.
Grande, G, Stajduhar, K, Aoun, S, et al. (2009) Supporting lay carers in end of life care: current gaps and future priorities. Palliative Medicine 23(4), 339344.
Haley, W, LaMonde, L, Han, B, et al. (2001) Family caregiving in hospice: Effects on psychosocial and health functioning among spousal caregivers of hospice patients with lung cancer or dementia. The Hospice Journal 15(4), 118.
Instituto Nacional de Estatística (2015) Causas de morte 2013 (edição 2015). Available from
Janze, A and 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.
Kang, J, Shin, D, Choi, J, et al. (2013) Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psycho-Oncology 22, 564571.
Kayser, K, Watson, L, and Andrade, J (2007) Cancer as a “we-disease”: Examining the process of coping from a relational perspective. Families, Systems, & Health 25(4), 404418.
Kristjanson, L, Atwood, J, and Degner, L. (1995). Validity and reliability of the Family Inventory of Needs (FIN): Measuring the care needs of families of advanced cancer patients. Journal of Nursing Measurement 3(2): 109126.
Marwit, S and Meuser, T (2002). Development and initial validation of an inventory to assess grief in caregivers of persons with Alzheimer's disease. The Gerontologist 42(6), 751765.
Marwit, S and Meuser, T (2005). Development of a short form inventory to assess grief in caregivers of dementia patients. Death Studies 29, 191205.
Milne, D and Quinn, K (2009) Family carers of people with advanced cancer. In Family carers in palliative care. Hudson, P and Payne, S (eds.), pp 211230. New York: Oxford University Press.
Morgan, T, Williams, L, Trussardi, G, et al. (2016) Gender and family caregiving at the end-of-life in the context of old age: A systematic review. Palliative Medicine 30(7), 616624.
Morishita, M and Kamibeppu, K (2014) Quality of life and satisfaction with care among family caregivers of patients with recurrent or metastasized digestive cancer requiring palliative care. Supportive Care in Cancer 22, 26872696.
Northouse, L (2012) Helping patients and their family caregivers cope with cancer. Oncology Nursing Forum 39(5), 500506.
Oberst, M, Thomas, S, Gass, K, et al. (1989) Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing 12(4), 209215.
Perez-Ordóñez, F, Frías-Osuna, A, Romero-Rodríguez, Y, et al. (2016). Coping strategies and anxiety in caregivers of palliative cancer patients. European Journal of Cancer Care 25, 600607.
Peters, M, Goedendorp, M, Verhagen, S, et al. (2015) A prospective analysis on fatigue and experienced burden in informal caregivers of cancer patients during cancer treatment in palliative phase. Acta Oncologica 54, 500506.
Rait, D (2015). A family-centered approach to the patient with cancer. In Psyco-Oncology (3rd ed.). Holland, J, Breitbart, W, Butow, P, et al. (ed.), pp 561566. New York: Oxford University Press.
Rha, S, Park, Y, Song, S, et al. (2015) Caregiving burden and health-promoting behaviors among the family caregivers of cancer patients. European Journal of Oncology Nursing 19, 174181.
Relvas, A (1989) Morte e luto na família – uma abordagem sistémica. Psicologia Clínica 1, 4959.
Rolland, J (2005) Cancer and the family: An integrative model. Cancer 104(11 Suppl), 25842595.
Rumpold, T, Schur, S, Amering, M, et al. (2016) Informal caregivers of advanced-stage cancer patients: Every second is at risk for psychiatric morbidity. Supportive Care in Cancer 24, 19751982.
Schulz, R and Sherwood, P (2008) Physical and mental health effects of family caregiving. American Journal of Nursing 108(9 Suppl), 2327.
Schumacher, K and Meleis, A (1994). Transitions: A central concept in nursing. Journal of Nursing Scholarship 26(2), 119127.
Siegel, R, Miller, K, and Jemal, A (2016). Cancer statistics, 2016. CA: A Cancer Journal for Clinicians 66, 730.
Simões, M (2014) O cancro. Lisbon: Relógio D’Água Editores.
Stratton, P, Bland, J, Janes, E, et al. (2010). Developing an indicator of family function and a practicable outcome measure for systemic therapy and couple therapy: The SCORE. Journal of Family Therapy 32, 232258.
Tang, S, Chang, W, Chen, J, et al. (2013) Course and predictors of depressive symptoms among family caregivers of terminally ill cancer patients until their death. Psycho-Oncology 22, 13121318.
Tomarken, A, Holland, J, Schachter, S, et al. (2008) Factors of complicated grief pre-death in caregivers of cancer patients. Psycho-Oncology 17, 105111.
Valeberg, B and Grov, E (2013) Symptoms in the cancer patient - Of importance for their caregivers’ quality of life and mental health. European Journal of Oncology Nursing 17, 4651.
Vilaça, M, Silva, T, and Relvas, A (2015) Systemic clinical outcome routine evaluation (SCORE-15). In Avaliação familiar: Funcionamento e intervenção [Family evaluation: Functioning and intervention], vol. I. Relvas, A and Major, S (eds.), pp 2344. Coimbra: Imprensa da Universidade de Coimbra.
Walsh, F (2003) Family resilience: Strengths forged through adversity. In Normal Family Processes: Growing Diversity and Complexity (3rd ed.). Walsh, F (ed.), pp 399423. New York, NY: The Guilford Press.
Walsh, F and McGoldrick, M (2004) Loss and the family: A systemic perspective. In Living Beyond the Loss (2nd ed.). Walsh, F and McGoldrick, M (eds.), pp 326. New York: W. W. Norton & Company.
World Health Organization (2015). Cancer. Fact sheet no. 297. Available from
Zaider, T and Kissane, D (2015) Psychosocial interventions for couples and families coping with cancer. In Psyco-Oncology (3rd ed.). Holland, J, Breitbart, W, Butow, P, et al. (eds.), pp 526531. New York: Oxford University Press.
Recommend this journal

Email your librarian or administrator to recommend adding this journal to your organisation's collection.

Palliative & Supportive Care
  • ISSN: 1478-9515
  • EISSN: 1478-9523
  • URL: /core/journals/palliative-and-supportive-care
Please enter your name
Please enter a valid email address
Who would you like to send this to? *



Altmetric attention score

Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed