Spiritual quality of life in family carers of patients with advanced cancer—a cross-sectional study

Supportive Care in Cancer (2021) 29:5329–5339 https://doi.org/10.1007/s00520-021-06080-5 ORIGINAL ARTICLE Spiritual quality of life in family carers of patients with advanced cancer—a cross-sectional study Ingebrigt Røen 1,2,3 & Anne-Tove Brenne 1,2,4 & Cinzia Brunelli 5 & Hans Stifoss-Hanssen 6 & Gunn Grande 7 & Tora Skeidsvoll Solheim 1,2 & Stein Kaasa 8,9,10,11 & Anne Kari Knudsen 8,9,10 Received: 4 November 2020 / Accepted: 17 February 2021 / Published online: 4 March 2021 # The Author(s) 2021 Abstract Purpose Caring affects carers’ psychological and physical health, mortality, and quality of life (QoL) negatively. Lower spiritual QoL is associated with anxiety and depression, but the spiritual dimension is rarely investigated in carers. The present study aimed to explore which patient- and carer-related characteristics were associated with spiritual QoL in carers of patients with advanced cancer. Methods Secondary analyses were conducted using data from a prospective study investigating integration between oncology and palliative care. Adult patients with advanced cancer and their carers were included, and baseline data considering demographics, clinical characteristics, symptoms, social support, and religious meaning-making were registered. Spiritual QoL was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp-12) questionnaire. Associations to spiritual QoL were explored by bivariate and multivariate regression models. Results In total, 84 carers were included, median age was 62.5 years, 52 (62%) were female, and the average spiritual QoL score was 23.3. In bivariate analyses, higher education, social support, and lower patients’ symptom burden were significantly associated with higher spiritual QoL. The multivariate regression model (n=77) had an explained variance (R2) = 0.34 and showed a significant association for social support, higher education, having children < 18 years living at home, and patient’s age. Conclusion The study indicates that spiritual QoL in carers were low and were negatively affected by several factors related to both carers and patients. However, there could be other important factors not yet described. Health care professionals should be aware of the known associated factors, as carers who hold these may need extra support. Keywords Spiritual quality of life . Family caregivers . Advanced cancer . Palliative . Spiritual care . Quality of life * Ingebrigt Røen 1 Department of Clinical and Molecular Medicine, Faculty of Medicine and Health Sciences, Norwegian University of Science and Technology (NTNU), Trondheim, Norway 2 St. Olavs Hospital, Trondheim University Hospital, 4. etg. Kunnskapssenteret vest, St. Olavs Hospital, 7006 Trondheim, Norway 3 Chaplaincy, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway 4 Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway 5 Palliative Care, Pain Therapy and Rehabilitation Unit, Fondazione IRCCS Istituto Nazionale Tumori, Milano, Italy 6 Center of diakonia and professional practice, VID Specialized University, Oslo, Norway 7 Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, England 8 European Palliative Care Research Centre (PRC), Oslo University Hospital and University of Oslo, Oslo, Norway 9 Institute of Clinical Medicine, Faculty of Medicine, University of Oslo, Oslo, Norway 10 Department of Oncology, Oslo University Hospital, Oslo, Norway 11 University of Oslo, Oslo, Norway 5330 Support Care Cancer (2021) 29:5329–5339 Background Family caregivers (hereafter: carers) have been defined as follows: “Carers, who may or may not be family members, are lay people in a close supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management” [1]. Improved treatments have extended the period of time carers spend caring for patients with advanced cancer, and the demands on carers have consequently increased considerably [2]. The burden of caring often exceeds carers’ coping abilities [3] and has been reported to negatively affect the carers’ psychological and physical health, mortality, social life, and quality of life (QoL) [4, 5]. The World Health Organization (WHO) includes spirituality in its four-dimensional palliative care definition (physical, psychological, social, and spiritual dimension) [6]. Changes in one dimension may influence one or more of the other dimensions (Fig. 1). Puchalski et al. stated that chaplains, or other spiritual experts, should be integrated in the health care team and recognized and referred to as the spiritual experts. Furthermore, they stated that all professions must share the responsibility for assessment and treatment of spiritual suffering [7]. One challenge of investigating the impact of spirituality in palliative care is the lack of clarity of its definitions [8]. Earlier, spirituality was understood mainly as religiosity. Today, religiosity is understood more as a potential subcategory of a person’s spirituality [9]. Despite this, research on spirituality in palliative care has often concentrated on Fig. 1 The four dimensions of quality of life (QoL). Changes in one QoL dimension may influence the other dimensions religiosity, mainly Christian. In the present study, we defined spiritual QoL without a religious component, in line with the European Association for Palliative Care (EAPC) Taskforce on spiritual care definition: “Spirituality is the dynamic dimension of human life that relates to the way persons (individual and community) experience, express and/or seek meaning, purpose and transcendence, and the way they connect to the moment, to self, to others, to nature, to the significant and/ or the sacred” [10]. However, even though focus on spirituality has been recommended [11, 12], it is still rarely included in palliative care research [9, 12]. Few studies have explored factors that impact on the spiritual QoL of carers of patients with advanced cancer, despite the existential threat they are exposed to. In a study including 41 carers of patients with advanced cancer, the 23 (58%) reporting having spiritual pain, had poorer scores in anxiety, depression, and more dysfunctional coping strategies than those not reporting spiritual pain [13]. Another study including 199 carers of cancer patients reported that spiritual QoL was associated with bodily pain, mental, and social QoL [14]. Furthermore, studies have shown an association between spiritual Qol in carers and their social support [15, 16], levels of anxiety [16, 17], levels of depression [17], and mental health [18, 19]. It is imperative to improve the QoL of the growing populations of carers of patients with advanced cancer, but there are neither resources nor need to offer all carers the same level of care. The overall aim of the present study was thus to identify Physical QoL (...truncated)