Guilt, shame and the perception of being a burden among older adult with multimorbidity: a scoping review and qualitative exploration - The GLASS Study

Problem

Due to an ageing population worldwide, care for older adults has become a global challenge. For many older adults living with multiple long-term conditions (or multimorbidity), poor care coordination, and overwhelming burden related to the necessity of learning about, following self-management plans and necessary lifestyle changes can be further complicated by feelings of guilt and shame of being a burden to formal and informal caregivers. Objective: This study aims to develop a better understanding of how feelings and experiences of guilt, shame, and the perception of being a burden impact on older adults’ health care interactions.

Approach

Three complementary research elements are being conducted: i) scoping review: involving a comprehensive search of databases (n=6) to identify relevant studies up to November 2022. Citations were independently screened by reviewers using pre-defined eligibility criteria (Protocol: Open Science Framework registry (https://doi.org/10.17605/OSF.IO/EKADQ). Extracted data were categorised and a map of existing knowledge and current gaps in literature is being profiled; ii) through interviews and focus groups, and using ‘creative methods’, we further explore older people’s experiences of guilt, shame and self-perceived burden, and their impact on healthcare use, self-management, and overall health. A public art gallery (virtual) will be developed, adding depth and richness to findings; iii) stakeholder engagement workshops will support co-design of strategies to reduce the potential impact of older adults’ perceptions of being a burden on their overall health outcomes, and interactions with health services. Settings: This is a mixed methods study, based in primary care. Clinicians and patients with multiple long-term conditions formed an advisory group contributing to study design, interpretation, and dissemination of findings. Engagement and involvement of public members, in this project is being guided by the UK Standards for public involvement framework.

Findings

9845 unique citations were screened in the review, 52 studies were included. Early findings show that older adults with multiple long-term conditions experience self-perceived burden. Further health deterioration and failing to meet health /self-management goal(s) may lead to feelings of guilt, and shame which may not often be communicated to care givers and/clinicians. Analysis is ongoing. Full findings will be presented at the conference.

Consequences

There’s need for awareness and strategies to strengthen support for the health and well-being of older adults with multiple long-term conditions in primary care. This may reduce health inequalities and enhance health and social-care delivery.