Care recipient self-perceived burden: Perspectives of individuals with chronic health conditions or personal experiences with caregiving on caregiver burden in the US

Abstract

Introduction: Self-perceived burden refers to the perceived impact of a care recipients’ illness and care needs on their caregiver(s). This study aimed to: 1) examine the components of caregiver burden from a perspective of people with chronic health conditions, 2) explore the extent to which people consider caregiver burden important in their healthcare decision-making, and 3) develop a global item to capture the essential elements of self-perceived burden. Methods: Semi-structured interviews using cognitive debriefing were conducted with US-based individuals with chronic conditions, informal caregivers and social care users between October and December 2018. Components of caregiver burden were organized within a concept analysis framework. The preferred wording for a global self-perceived burden item was explored for face and content validity using five candidate items. Interviews were transcribed verbatim and analyzed using thematic analysis. Results: Total of 19 participants, aged 23–76, completed the interviews. Study identified three main antecedents of caregiver burden: caregiving situation, financial resources, and sociocultural environment. Attributes included physical, emotional, financial, and social aspects. Consequences were financial hardship and decreased health-related quality of life. Most participants distinguished “burden” from related concepts such as “bother” and “stress”. “I feel like a burden to my family/friends” with a severity response option scale, was perceived to broadly encompass the construct. Conclusion: Self-perceived burden was identified as a highly relevant concept in healthcare decision-making for US participants. A global self-perceived burden item can provide a valuable summary measure to inform medical decision-making and potentially capture spillover effects of patient care on family and caregivers.

Keywords

• Caregiver burden
• Care recipient self-perceived burden
• Global care recipient self-perceived burden item
• Self-perceived burden
• US healthcare system