“I don’t have a choice but to keep getting up and doing the things that protect her”: The informal caregiver’s adaptation to the cancer diagnosis

Abstract

Purpose

Patients with hematologic malignancies (HM) typically rely on informal caregivers for support. Caregivers experience distress, poorer health, and lower quality of life. This study aimed to understand caregivers’ experiences adapting to, and making meaning of, their family members’ cancer diagnosis and treatment.

Approach

Qualitative, constructivist approach.

Participants

Caregivers (N = 28) of patients with HM within three months of diagnosis.

Methods

A descriptive content analysis was used to analyze semi-structured interview responses and generate themes.

Findings

Six themes emerged: power and control (powerlessness, empowerment, relinquishing control/accepting help), protection (gatekeeping, protective buffering), integrating the diagnosis, tolerating uncertainty, preparedness for the caregiver role, and maintaining positivity.

Conclusions

Findings highlight challenges and resilience-promoting processes for caregivers adapting to HM diagnosis and treatment.

Implications for Psychosocial Providers

Psychological and supportive care interventions can promote acceptance of the diagnosis, preparation for caregiving, navigation of power and control, and targeted coping strategies.

Keywords:

• Cancer
• caregiver
• hematological malignancy
• impact of diagnosis
• qualitative methods
• quality of life

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by the VCU Massey Cancer Center Tina L. Bachas Nursing Award Program and the Susan White Holsworth Palliative Care Scholar funds. We appreciate the caregivers who shared their experiences with us, the nurse navigators who helped identify potential participants (Ashlee Nickens and Patricia McCann), and unit nurses who welcomed us and introduced us to patients and their families.