The interaction between lived experiences of older patients and their family caregivers confronted with a cancer diagnosis and treatment: a qualitative study

Abstract

Background: Despite the growing incidence of cancer among older people, little is understood about how older patients and their family caregivers experience receiving a cancer diagnosis and treatment and how their experiences mutually influence each other. Such knowledge is needed to provide meaningful support for both the older person and family caregivers.

Objectives: Exploring lived experiences of older cancer patients, family caregivers and their interaction.

Design: Qualitative interview design.

Setting: Six outpatient oncology departments at a University Hospital.

Participants: Thirty-two patients (age range 70-86) and 19 family caregivers (age range 42-83).

Methods: Semi-structured interviews with a fairly open framework were conducted and analyzed using the constant comparative method inspired by a grounded theory approach.

Results: Older patients and family caregivers experience important demands when confronted with cancer. Patients feel the inherent need to search for hope, and the majority are able to do so by employing coping strategies. Because of their older age, patients anticipate getting a serious illness such as a cancer diagnosis. Family caregivers become 'a family member of an older person with cancer' and feel responsible for the patient's well-being and for providing care. If patients are able to maintain a 'positive' story, family caregivers support this ability. If not, they search for a 'positive' story and point this out to the patient. Most family caregivers perceive their care-giving as a normal process and find it difficult to request professional help for themselves. Nevertheless, knowing that professional help is available whenever they need it reassures them. Overall, life continues during the illness experience: the interaction between patients and family caregivers goes on, their relationship proceeds, the coping and care patterns continue.

Conclusions: The cancer diagnosis has a major impact on patients and family caregivers. This study offers a framework for understanding what is it like to have cancer in old age and outlines the importance of listening actively to the life stories of patients and family caregivers in order to comprehend coping strategies. This may result in better tailored patient-family centered care.

Keywords: Aged; Cancer diagnosis; Caregivers; Coping skills; Frail elderly; Lived experience(s); Mutual protection; Qualitative research.