Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research

Abstract

In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective. Please see later in the article for the Editors' Summary

A Look at Person-Centered and Family-Centered Care Among Older Adults: Results from a National Survey

“…The clinical relevance of treatment burden has been established for consequential outcomes such as adherence to prescribed treatments, quality of life, and health services utilization. 13,22,[36][37][38] That aspects of burden associated with managing health was more commonly experienced by persons in worse health underscores the practical importance of incorporating individual perspectives and preferences in prioritization of possible treatment and preventive regimens by balancing evidence of clinical benefit with minimizing burdens. [39][40][41] Current delivery and reimbursement structures fail to support providers' ability to comprehensively deliberate with patients about the risks and benefits of alternative treatment options and preventive strategies.…”

“…Questions to assess health care decision-making preferences and treatment burden were developed based on existing literature, and were devised for broad population relevance and feasible administration within a national survey. This emphasis varies from the prevailing evidence base that has focused on decision-making preferences and experiences of care with a specific health condition, 13,22,38 clinical situation, 36,37 or medical encounter, 14,28 although measures to ascertain these constructs are evolving. 2,49,50 Study findings are limited to older adults' perspectives, and do not encompass perspectives of family members and close friends who may share or assume responsibility for management of health care activities.…”

“…8,9 The existing literature generally indicates that older adults prefer a passive role in health care decision-making [10][11][12] and portrays older adults as burdened by care. 13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions. [12][13][14][15][16] Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care.…”

“…13,14 However, prior studies have typically emphasized age-related differences, 10,11 or focused on targeted subgroups of older adults with low-literacy, poor health, or specific conditions. [12][13][14][15][16] Understanding what people view to be important and their experience of care is foundational in the measurement of person-centered and family-centered care. 2 Therefore, we designed a study to understand older adults' preferences for participating in health care decision-making and their experiences with care as measured by aspects of treatment burden associated with managing health.…”

Strengthening nursing role and functions in stroke rehabilitation 24/7: A mixed‐methods study assessing the feasibility and acceptability of an educational intervention programme

“…Patients perceive nursing staff as only focusing on meeting patients’ basic physical needs, which gives patients a feeling of physiological and emotional isolation during their inpatient rehabilitation (Gallacher et al, 2013; Hole et al, 2014; Satink et al, 2013; Secrest & Thomas, 1999). Patients admitted to inpatient rehabilitation are described as being inactive and alone during the day (Bernhardt, Dewey, Thrift, & Donnan, 2004; West & Bernhardt, 2012) despite evidence that early rehabilitation and intensive training are significant for functional outcome (Askim, Bernhardt, Salvesen, & Indredavik, 2014; Bernhardt, Godecke, Johnson, & Langhorne, 2017).…”