Conceptualization, use, and outcomes associated with compassion in the care of people with multiple sclerosis: a scoping review

Abstract

Objective Compassion is widely regarded as an important component of high-quality healthcare. However, its conceptualization, use, and associated outcomes in the care of people with multiple sclerosis (PwMS) have not been synthesized. The aim of this review is to scope the peer reviewed academic literature on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Methods Studies were eligible for inclusion if reporting primary research data from quantitative, qualitative, or mixed-methods studies on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Relevant studies were identified through searching five electronic databases (CINAHL, Cochrane Library, EMBASE, MEDLINE, and PsycINFO) in January 2022. We followed the guidance outlined in the Joanna Briggs Institute (JBI) manual for evidence synthesis, and also referred to the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for Scoping Reviews Checklist (PRISMA-ScR). Simple descriptive methods were used to chart quantitative findings, and a descriptive approach with basic content analysis was employed to describe qualitative findings. Results Fifteen studies were included (participant n = 1722): eight quantitative, six mixed-methods, one exclusively qualitative. Synthesized qualitative data revealed that PwMS conceptualize compassion as involving self-kindness, agency, and acceptance. PwMS report using self-compassion in response to unpleasant sensations and experiences. Quantitative findings suggest that compassion may mediate benefit finding, reduced distress, and improved quality of life (QoL) in PwMS, that those with the condition may become more compassionate through time, and that self-compassion specifically can be increased through training in mindfulness. In this context, greater self-compassion in PwMS correlates with less depression and fatigue, better resilience and QoL. Among studies, self-compassion was the most common outcome measure for PwMS. Conclusions A nascent literature exists on the conceptualization, use, and outcomes associated with compassion in the care of PwMS. Further research is required to better understand what compassion means to PwMS and those caring for them. However, self-compassion can be cultivated among PwMS and may be helpful for managing unpleasant somatic symptoms and in benefit finding. Impact on other health outcomes is less clear. The use of compassion by health care providers in the care of PwMS is unstudied.

Conceptualization, use, and outcomes associated with compassion in the care of youth with childhood-onset disabilities: a scoping review

“…Several scoping reviews on compassion within the healthcare context have noted that compassion is often studied in healthcare providers more frequently than in patients ( Sinclair et al, 2016 ; Malenfant et al, 2022 ; Simpson et al, 2022 ). However, within the childhood-onset disability population, none of the reviewed studies described the interpersonal qualities or skills that define compassionate pediatric healthcare providers.…”

“…Compassion is often included in the competency frameworks and codes of ethics of professional healthcare organizations and is a crucial component of providing quality healthcare ( Sinclair et al, 2016 ; Malenfant et al, 2022 ; Simpson et al, 2022 ). Several physician behaviors identified by patients as important to providing compassion within healthcare interactions include: (1) listening and paying attention to the patient; (2) respecting preferences (i.e., physicians are culturally competent, respect the patient’s preferences and ensure patients are actively involved in healthcare decisions); (3) continuity of care (i.e., long-term management of chronic conditions with a physician); (4) genuine understanding (i.e., seeking to understand the patient’s situation and symptoms to attempt to identify a cause); (5) following-up on patient test results; (6) body language (i.e., not speaking over a patient, physician moves their chair to face patient, and explaining diagnosis in a manner the patient will understand); and (7) counseling and advocacy (i.e., being non-judgmental toward concerns related to mental health, chronic illness and diagnoses with somatic complaints, showing sensitivity, and providing counseling and advocacy related to these concerns) ( Baguley et al, 2022 ).…”

The bifactor structure of the Self-Compassion Scale: Bayesian approaches to overcome exploratory structural equation modeling (ESEM) limitations.

“…Ferrari et al’s (2019) meta-analysis found that self-compassion interventions had beneficial effects across 11 psychosocial outcomes, including eating behavior, rumination, self-compassion, stress, depression, MI, self-criticism, and anxiety. Further meta-analyses reported that self-compassion benefits the psychological well-being of diverse populations, including people with multiple sclerosis (Simpson et al, 2023), sexual and gender minorities (Helminen et al, 2023), patients with breast cancer (Fan et al, 2023), Asian communities (Kariyawasam et al, 2023), those who are self-critical (Wakelin et al, 2022), and those with body image concerns (Turk & Waller, 2020).…”