Explaining the Experiences and Consequences of Care Among Family Caregivers of Patients with Cancer in the Terminal Phase: A Qualitative Research

Abstract

Background: Cancer is a disease which affects both the patient and family members. Family caregivers of these individuals have been recognized as the undercover patients, the problems and experiences of whom should be evaluated. The present research has been aimed to provide a deep understanding of the experiences and consequences of care in family caregivers of patients with cancer in the terminal phase. Methods: The present research has been conducted by a qualitative content analysis method. The sampling method was purposeful and it was progressed until data saturation. The data were gathered through in-depth semi-structured interviews, and then, were analyzed via content analysis. Results: From the total 18 interviews, 413 initial concepts (codes) were obtained. Finally, three main concepts (categories) were extracted after data analysis, including: 1, inhibition; 2, challenges and consequences of care; and 3, supportive-palliative factors. Conclusions: According to the family caregivers' condition in Iran, that is, caring overload, informational and emotional inhibition, and spirituality as a way of alleviation and adaptability, the emergent need for counseling and psychological-socialinformational-spiritual support particular to this culture, seems to be necessary.

'The experience of spirituality in family caregivers of adult and elderly cancer patients receiving palliative care: A meta‐synthesis'

“…With the uncertainties arising from the worsening of the disease and the possibility of imminent death of the loved one, family caregivers found more intense relief, acceptance and support in their religious and spiritual beliefs and practices (Bruun et al, 2011;Juarez et al, 2014Juarez et al, , 2015Paiva et al, 2015), seeing illness as 'divine will and ordeal' (Arian et al, 2017;Juarez et al, 2014;Lima & Machado, 2018;Rocha et al, 2018;Sutherland, 2009). The support of the religious community brought comfort and hospitality (Cagle & Kovacs, 2011;Lima & Machado, 2018;Maddalena et al, 2010).…”

“…The experience of being a caregiver and being aware of the disease progression often encouraged family members to search for new meanings in their lives (Arian et al, 2017;Cagle & Kovacs, 2011;Juarez et al, 2014;Lee & Yoo, 2015;Lima & Machado, 2018;Maddalena et al, 2010;Paiva et al, 2015;Rocha et al, 2018;Sutherland, 2009;Totman et al, 2015). Family caregivers sought to value the moments lived with the patient: 'we've been together…”

“…for 31 years now… It takes something like this to bring two people together' (Arian et al, 2017;Lee & Yoo, 2015;Sutherland, 2009, p. 426;Totman et al, 2015), while appreciating their teachings, values and affections; they tended to review the personal history of the sick person and their influence on their lives (Cagle & Kovacs, 2011;Lee & Yoo, 2015;Lima & Machado, 2018). This process brought personal growth (Lima & Machado, 2018) and new meanings to existence through reflection on how to live life and to live with death itself (Lee & Yoo, 2015;Lima & Machado, 2018;Paiva et al, 2015;Totman et al, 2015).…”

“…Quality assessment of included studies according to the Critical Appraisal Skills Program (CASP) Characteristics of the studies included in the thematic synthesisArian et al (2017), IranTo provide a deep understanding of the experiences and consequences of care in family caregivers of patients with cancer in the terminal phase…”

Caregivers of cancer patients: what are their information-seeking behaviours and resource preferences?

“…Cancer impacts not only the patient but also the family members who share the distressing trajectory of the patient [ 1 – 3 ]. It disrupts family dynamics and changes roles and daily functioning [ 4 ]. Care responsibilities comprises both tangible assistance such as preparing meals for patients, providing transportation, helping with medication, communicating with doctors, and assessing the need for medication and treatment and intangible assistance, such as providing emotional, financial, social and spiritual support [ 5 , 6 ].…”