Becoming a secondary actor of one's own life: A qualitative study of the experiences of informal caregivers in the care of people with chronic pain

Abstract

Abstract Introduction The physical limitations experienced by people with chronic pain (CP) produce a greater need for care and assistance, most of which is provided by an informal caregiver (IC). Despite the key role ICs play in the everyday lives of individuals living with CP, knowledge about their experiences and needs is limited. We aimed to address this limitation by exploring the experiences of IC of people with CP. Methods This is a qualitative descriptive study using semistructured interviews. Participants were 12 ICs purposively chosen from the Unit of Pain at the University Hospital in Cádiz. Individual interviews were recorded, transcribed verbatim and analysed following thematic analysis. Results We developed one overarching theme ‘Becoming a secondary actor of one's own life’ and three themes: 1. Key elements that shape a caregiver's experiences; 2. It's the hand that life dealt me; 3. The burden of being a caregiver and coping strategies. Conclusions This study's findings highlight how the CP impacts IC lives. Being an IC for a relative with CP became the most important role in the IC's life, to the point of casting a shadow over their own needs. Besides, participants felt not having other options but to keep going with that role. Yet, the context was essential in shaping the experiences as caregivers and the burden derived from caregiving. In this line, differences related to gender roles were found in the narratives of participant women and men. Patient or Public Contribution Participants were purposively chosen from the Unit of Pain at the University Hospital ‘Puerta del Mar’ who attended the consultation accompanying their relatives. All the eligible participants were approached by the clinician. After this initial approach by the clinician, one of the researchers met the potential participant and they went to a quieter place in a clinical setting for the interview, before which the participant was shown a letter with more comprehensive information about the study and its aim. The participants were left alone to read and think carefully before giving their written informed consent. Participation was voluntary and the subjects received no financial contribution for their time.

Keywords

• burden
• chronic pain
• experiences
• informal caregivers