2009 – 2013
South-Eastern Norway Reginal health Authority and Oslo University Hospital
About the project
This study was part of a larger interdisciplinary and international collaborative study to advance knowledge of patients with cancer and their family caregivers’ (FCs) symptoms, problems, burden and health related quality of life and to develop an Internet based intervention for FC support.
This study was conducted to provide insight into the situation of FCs of patients with cancer. The overall aim of this thesis was to synthesize findings about the challenging situation of FCs living close to a patient with cancer, based on conceptualization and knowledge from various perspectives: literature, social workers, health care professionals and FCs themselves.
First, a systematic literature review (Paper I) was conducted to identify the types of problems and burdens that FCs of cancer patients experience during the patient’s illness. Of 2845 titles identified, 192 articles met the inclusion criteria and were included in this review. Of these, 164 were research-based. In addition to FC responsibilities and the impact of being a caregiver on daily life, a number of other physical, social, and emotional problems related to caregiving for these FCs were identified.
To obtain a deeper understanding of the experiences of FCs living close to a patient with cancer, individual interviews were conducted with 15 FCs (Paper II). This study revealed that living close to a patient with cancer over the course of his or her illness affected many aspects of the FC’s life in significant ways. Their experiences were summarized in two major themes: living in an ever changing life world, and balancing between conflicting interests and dilemmas.
To further explore on the situation of FCs and of their need for support over the course of the patient cancer trajectory, as seen from the perspective of social- and health care professionals, four focus groups and two individual interviews were conducted with 24 social- and healthcare professionals in cancer care (Paper III). From these analyses four main themes emerged, that describe the social and health care professional’s experiences of FCs, seen with the social- and health care professionals eyes, especially from the early phases of the patient’s cancer trajectory: infinitely strong and struggling with helplessness; being an asset and an additional burden to health care; being an outsider in the center of care; and being in different temporalities. Social- and health care professionals experienced it as a challenge to create space for FCs in patients’ in-hospital care and to support both patients and FCs.
In the last paper (Paper IV) we investigated changes over time in FCs’ perceived levels of symptoms and caregiver burden in a relatively large sample of FCs of cancer patients under treatment; how FCs’ demographic characteristics were associated to FCs’ symptoms and caregiver burden; and how FCs symptoms were associated with caregiver burden. Of 278 FCs included in the study, 198 completed self-reported questionnaires on demographic characteristics and depression, fatigue, sleep disturbance and caregiver burden, at the time of the patient’s diagnosis and after three and six months. FCs experienced high levels of depressive symptoms and sleep disturbance, low levels of fatigue and low to moderate levels of caregiver burden over time. On the basis of established cut-off points, 24.3% of the FCs had clinically meaningful levels of depression, and 39.3% sleep disturbance. Being female and not being employed were factors associated with an increased risk of symptoms and caregiver burden.
The knowledge from our study contributes to a better understanding of FCs’ experiences and needs for support, specifically regarding the early phases of the cancer patients’ illness. Moreover this knowledge comes from different perspectives (FCs and social- and health care professionals), and has been gathered using a variety of methods.
Finally, the understanding evolving from this study about FCs’ own health risk, caregiver burden and experiences through the patient’s cancer trajectory can enhance social workers and health care professional’s awareness of FCs’ challenging situation and the potential impact this has on the FCs ability to provide care to the patient.
- Stenberg U., M.Cvancarova, M.Ekstedt, M.Olsson and C.Ruland (2014) Family Caregivers of Cancer Patients: Perceived Burden and Symptoms During the Early Phases of Cancer Treatment. Social work in health careSocial Work in Health Care 53(3) p.289-309
- Ekstedt, M., U. Stenberg, M. Olsson and C. Ruland. Health Care Professionals Perspectives on the Experiences of Family Caregivers of Patients in Cancer Care. Submitted
- Stenberg, U., C. Ruland C, M. Olsson and M. Ekstedt (2012) To Live Close to a Person With Cancer-Experiences of Family Caregivers. Social work in health care. 51(10) p.909- 926.5110909926 DOI 10.1080/00981389.2012.714847
- Stenberg, U., C. Ruland and C.Miaskowski (2010) Review of the literature on the effects of caring for a patient with cancer.Psycho-Oncology19(10) p1013-1025, DOI10.1002/pon.1670