Palliative and Supportive Care

Family caregivers voice their needs: A Photovoice study

Jennifer Angelo^a1 c1 and Richard Egan^a2

^a1 Otago Community Hospice, Dunedin, New Zealand, and School of Physiotherapy, Division of Health Sciences, University of Otago, Otago, New Zealand

^a2 Cancer Society Social and Behavioural Research Unit, Te Hunga Rangahau Ārai Mate Pukupuku, Department of Preventive and Social Medicine, University of Otago Medical School, Dunedin, New Zealand

Abstract

Objective: Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.

Method: Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.

Results: The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.

Significance of results: Caregivers perform a variety of tasks, often under stress. 

This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. 

The themes were found to be intertwined, showing the complexity of the caregiving role.

(Received March 14 2014)

(Accepted April 22 2014)

Keywords

• Caregivers;
• Family support;
• Palliative care;
• Photovoice

Correspondence

^c1 Address correspondence and reprint requests to: Jennifer Angelo, Otago Community Hospice, 293 North Road, North East Valley, Dunedin 9010, New Zealand. E-mail: jangelo@jangelo.com