The wellbeing of carers of people with severe and enduring eating disorders (SEED)

Introduction: Research on carers of people with eating disorders (ED) is limited and on carers of people with severe and enduring eating disorders (SEED) almost nonexistent. Nearly 40% of carers of people with ED experience clinical level mental health difficulties. The current aims investigated wellbeing in carers of people with ED and specifically, carers of people with SEED; investigated gender differences; and compared data with wellbeing studies investigating carers of people with other long-term conditions. The Stress Process Model (SPM) (Pearlin, Mullan, Semple, & Skaff, 1990) was used to better understand predictors of wellbeing.

Method: Carers (28 male, 76 female) were recruited from ED carer support groups. Carers were stratified using duration (since diagnosis) of their recipient’s ED (0-2 years, 2-6 years, over 6 years). The “over 6 years” category was classified as SEED. Comparison data were drawn from carers of people with dementia, brain injury, ED and psychosis. Standardised questionnaires measured wellbeing (SF-36), experiences of caregiving (ECI), perceived caregiver competence (MoCC), sense of personal mastery (MoPM) and expressive support (MoES).

Results: Carers of people with SEED were not significantly different on reported wellbeing to the whole sample of carers of people with ED. However, carers of people with ED reported significantly less wellbeing than community norms, carers of people with brain injury and dementia. Perceived dependency, carer gender and sense of personal mastery accounted for 29% of the variance in mental wellbeing scores. Differences in reported positive experiences of caregiving were identified.

Discussion: The mental wellbeing of carers of people with SEED and ED appears poorer than carers of other conditions. Further research on carers of people with SEED is needed. The SPM is a helpful framework to use. Clinical implications include ensuring that perception of dependency and the positive experiences of caregiving are addressed in workshops and support groups.