Training Neurodegenerative Disease Support Group Leaders: A New Support Group Functioning Scale.

Abstract

Support group leaders play pivotal roles in maintaining healthy community support groups; however, these leaders also have personal support needs and typically lack formal training in managing complex behaviors of neurodegenerative disorders. A support group well-being questionnaire, assessing support group functioning, was developed and piloted among participants of an educational training program designed for support group leaders of various neurodegenerative disorder-specific support groups. An exploratory factor analysis evaluated the questionnaire’s psychometric properties and identified a reliable single factor five-item solution, which was titled the Support Group Functioning Scale (SGFS). Preliminary interpretation guidelines were proposed. Development of this scale is a first step in identifying support group leaders’ needs as they provide frontline assistance to caregivers and individuals with neurodegenerative illnesses. This tool shows promise as an efficient way to identify support groups in need of assistance and to assess the impact of trainings on support group functioning. Further validation of the scale is needed.