Cancer, a relational disease

ABSTRACT

Purpose: In this qualitative interview study we investigated the experiences of family members to cancer patients. Our objective was to explore and to differentiate their needs from the needs of cancer patients.

Methods: Five focus groups and six individual narrative interviews with 17 family members to cancer patients in Sweden were conducted and compared with 19 cancer patient interviews. Our analysis was inspired by classic grounded theory.

Results: Family members to cancer patients expressed own morbidity connected to high stress levels and difficulties in recognizing own stress due to ongoing comparisons with the cancer patient. Family members were trapped in a momentary terror-like situation where they became their sick relative’s safety net. A percieved inability to improve their loved one’s well being contributed to a feeling of guilt. The longing for it all to end was encumbered with shame since the end included possible death.

Conclusions: By recognizing cancer as a disease striking both body and relationships, family members are given precedence over their own struggles, differentiated from the patient’s experiences. We define differences in needs between cancer patients and family members. Family members to cancer patients may be supported in developing balancing strategies towards less stress, increased safety and moments of contentment.

KEYWORDS:

• Health
• family members
• carers
• cancer care
• grounded theory
• waiting
• safety
• momentary contentment
• salutogenesis
• informal caregiver

Authors’ contribution

The first author carried out the data collection. All authors participated in the analysis and the design of the study. All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

Disclosure statement

No potential conflict of interest was reported by the authors.

Correction Statement

This article has been republished with minor changes. These changes do not impact the academic content of the article.

Additional information

Notes on contributors

Ulrika Sandén

Ulrika Sandén is a PhD student in innovation engineering with a special interest in user innovation, patient perspective and cancer care. She is the initiator of a new course at Lund university bringing cancer patients, family members and staff together.

Fredrik Nilsson

Fredrik Nilsson is a professor at the Department of Design sciences. His research interest is in innovation, inter-organizational development and complexity thinking, with current projects in healthcare and consumer goods supply chains.

Hans Thulesius

Hans Thulesius is a professor in family medicine at Linnaeus University, national editor of Scandinavian Journal of Primary Health Care and part time family physician.

Maria Hägglund

Maria Hägglund is an associate professor at the Department of Women’s and Children’s Health, Uppsala University. She has a special interest in family perspective on cancer care.

Lars Harrysson

Lars Harrysson, is a senior lecturer at School of Social Work and specializes in elderly care, retirement and pedagogic explorations.