| Autor: |
Maja Kuharic, Lisa K. Sharp, Robin S. Turpin, Brendan Mulhern, Todd A. Lee, Chloe Elizabeth Grace Rose, Andrea Monteiro, A. Simon Pickard |
| Jazyk: |
angličtina |
| Rok vydání: |
2024 |
| Předmět: |
|
| Zdroj: |
SSM: Qualitative Research in Health, Vol 5, Iss , Pp 100398- (2024) |
| Druh dokumentu: |
article |
| ISSN: |
2667-3215 |
| DOI: |
10.1016/j.ssmqr.2024.100398 |
| Popis: |
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. |
| Databáze: |
Directory of Open Access Journals |
| Externí odkaz: |
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