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

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.

Living with non-cardiac chest pain—a qualitative study of spouses’ perspectives

“…In our study, spouses reported taking on greater responsibility for household tasks and had less leisure time, which impacted their everyday lives negatively as they became inactivate and isolated at home. This is a common theme in other studies, in which spouses also reported social isolation and feeling constrained, even if they left home, as they were plagued by feelings of worry and guilt (32,34). Although some spouses reported that the challenges of dealing with NCCP could strengthen their relationship, others experienced strained and changed relationships; e.g., change in relationship roles and a loss of intimacy.…”

“…To conclude, this study, among others, shows that spouses of patients with somatic problems, such as NCCP, have complex physically-, emotionally-, and socially-strained living situation and unmet needs (31)(32)(33)(34)(35). It is important that healthcare professionals do not forget spouses in their encounters with the NCCP patients and acknowledge and support them in their struggle to help their partners to deal with chest pain, and thereby not to become healthcare consumers themselves.…”

“…Spouses´ experiences were categorized as "a feeling of being neglected", "a tension between the hope and despair" and "a threat to ordinary life". Although this is the rst study among spouses of patients with NCCP, there are studies performed in spouses or families of patients with established medical diagnoses, such as heart failure (31), chronic pain (32), chronic musculoskeletal pain (33), multiple chronic conditions (34), and cancer (35).…”

Living with non‐cardiac chest pain – An inductive qualitative interview study of spouses' perspectives

“…To conclude, this study, among others, shows that spouses of patients with somatic problems, such as NCCP, have complex physically, emotionally and socially strained living situations and unmet needs (De Sola et al, 2023;Imes et al, 2011;Kim et al, 2020;Lambert et al, 2012;Neate et al, 2019;Ploeg et al, 2020;Smith et al, 2021).…”

“…Spouses’ experiences were categorized as “a feeling of being neglected”, “a tension between hope and despair” and “a threat to ordinary life”. There are several studies performed on spouses or families of patients with established medical diagnoses, such as heart failure (Imes et al., 2011; Kim et al., 2020), chronic pain (De Sola et al., 2023), chronic musculoskeletal pain (Smith et al., 2021), multiple sclerosis (Neate et al., 2019), multiple chronic conditions (Ploeg et al., 2020) and cancer (Lambert et al., 2012). However, this study differs in that it explores experiences of living with a partner with an unclear condition and recurring symptoms that are difficult to manage as they often do not receive a diagnosis or explanation for their symptoms, and therefore, fall between the cracks.…”