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

Published online by Cambridge University Press:  26 February 2018

Neide P. Areia Open the ORCID record for Neide P. Areia [Opens in a new window] ,
Gabriela Fonseca ,
Sofia Major  and
Ana P. Relvas
Neide P. Areia*
Affiliation:
Faculty of Psychology and Education Sciences of the University of Coimbra, Coimbra, Portugal
Gabriela Fonseca
Affiliation:
Faculty of Psychology and Education Sciences of the University of Coimbra, Coimbra, Portugal Centre for Social Studies of the University of Coimbra, Coimbra, Portugal
Sofia Major
Affiliation:
Faculty of Psychology and Education Sciences of the University of Coimbra, Coimbra, Portugal Centre for Social Studies of the University of Coimbra, Coimbra, Portugal
Ana P. Relvas
Affiliation:
Faculty of Psychology and Education Sciences of the University of Coimbra, Coimbra, Portugal Centre for Social Studies of the University of Coimbra, Coimbra, Portugal
*
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: neideareia@hotmail.com
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Abstract

Objective

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.

Method

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.

Result

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.

Keywords

Psychological morbidityrisk factorspalliative carecancerfamily caregivers
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 3 , June 2019 , pp. 286 - 293
Copyright
Copyright © Cambridge University Press 2018 

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References

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. 105–124. Coimbra: Imprensa da Universidade de Coimbra.Google Scholar
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. 125–145. Coimbra: Imprensa da Universidade de Coimbra.10.14195/978-989-26-1268-3_6Google Scholar
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, 615–623.10.1002/pon.1435Google Scholar
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), 592–599.Google Scholar
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 95–109. Braga, Portugal: APPORT/SHO.Google Scholar
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. 115–130. Lisboa: Pactor.Google Scholar
Derogatis, L (2001) BSI 18 – Brief Symptom Inventory 18: Administration, scoring, and procedures manual. Minneapolis: MN: Pearson.Google Scholar
Fasse, L, Flahault, C, Brédart, A, et al. (2015) Describing and understanding depression in spouses of cancer patients in palliative phase. Psycho-Oncology 24, 1131–1137.Google Scholar
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, 252–258.10.3109/0284186X.2010.529821Google Scholar
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, 425–432.Google Scholar
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), 1105–1115.10.1188/04.ONF.1105-1117Google Scholar
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, 81–88.Google Scholar
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, 2775–2782.Google Scholar
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), 339–344.Google Scholar
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), 1–18.Google Scholar
Instituto Nacional de Estatística (2015) Causas de morte 2013 (edição 2015). Available from https://www.ine.pt/.Google Scholar
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), 494–501.10.12968/ijpn.2014.20.10.494Google Scholar
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, 564–571.Google Scholar
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), 404–418.10.1037/1091-7527.25.4.404Google Scholar
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): 109–126.10.1891/1061-3749.3.2.109Google Scholar
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), 751–765.10.1093/geront/42.6.751Google Scholar
Marwit, S and Meuser, T (2005). Development of a short form inventory to assess grief in caregivers of dementia patients. Death Studies 29, 191–205.Google Scholar
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 211–230. New York: Oxford University Press.Google Scholar
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), 616–624.Google Scholar
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, 2687–2696.Google Scholar
Northouse, L (2012) Helping patients and their family caregivers cope with cancer. Oncology Nursing Forum 39(5), 500–506.Google Scholar
Oberst, M, Thomas, S, Gass, K, et al. (1989) Caregiving demands and appraisal of stress among family caregivers. Cancer Nursing 12(4), 209–215.10.1097/00002820-198908000-00003Google Scholar
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, 600–607.Google Scholar
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, 500–506.10.3109/0284186X.2014.953254Google Scholar
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 561–566. New York: Oxford University Press.Google Scholar
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, 174–181.Google Scholar
Relvas, A (1989) Morte e luto na família – uma abordagem sistémica. Psicologia Clínica 1, 49–59.Google Scholar
Rolland, J (2005) Cancer and the family: An integrative model. Cancer 104(11 Suppl), 2584–2595.10.1002/cncr.21489Google Scholar
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, 1975–1982.10.1007/s00520-015-2987-zGoogle Scholar
Schulz, R and Sherwood, P (2008) Physical and mental health effects of family caregiving. American Journal of Nursing 108(9 Suppl), 23–27.Google Scholar
Schumacher, K and Meleis, A (1994). Transitions: A central concept in nursing. Journal of Nursing Scholarship 26(2), 119–127.10.1111/j.1547-5069.1994.tb00929.xGoogle Scholar
Siegel, R, Miller, K, and Jemal, A (2016). Cancer statistics, 2016. CA: A Cancer Journal for Clinicians 66, 7–30.Google Scholar
Simões, M (2014) O cancro. Lisbon: Relógio D’Água Editores.Google Scholar
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, 232–258.10.1111/j.1467-6427.2010.00507.xGoogle Scholar
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, 1312–1318.10.1002/pon.3141Google Scholar
Tomarken, A, Holland, J, Schachter, S, et al. (2008) Factors of complicated grief pre-death in caregivers of cancer patients. Psycho-Oncology 17, 105–111.Google Scholar
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, 46–51.Google Scholar
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 23–44. Coimbra: Imprensa da Universidade de Coimbra.Google Scholar
Walsh, F (2003) Family resilience: Strengths forged through adversity. In Normal Family Processes: Growing Diversity and Complexity (3rd ed.). Walsh, F (ed.), pp 399–423. New York, NY: The Guilford Press.Google Scholar
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 3–26. New York: W. W. Norton & Company.Google Scholar
World Health Organization (2015). Cancer. Fact sheet no. 297. Available from http://www.who.int/mediacentre/factsheets/fs297/en/Google Scholar
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 526–531. New York: Oxford University Press.Google Scholar