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

Area of Science:

• Neuroscience
• Community Health
• Psychometrics

Background:

• Support group leaders are crucial for neurodegenerative disorder communities.
• Leaders often lack formal training and have unmet personal support needs.
• Managing complex behaviors in neurodegenerative disorders presents unique challenges for leaders.

Purpose of the Study:

• To develop and validate a psychometric tool to assess the functioning of support groups for neurodegenerative disorders.
• To identify the support needs of group leaders.
• To provide a means to evaluate the impact of training programs on support group functioning.

Main Methods:

• Development and piloting of a support group well-being questionnaire.
• Exploratory factor analysis to evaluate psychometric properties.
• Focus on participants of an educational training program for support group leaders.

Main Results:

• A reliable, five-item, single-factor solution was identified: the Support Group Functioning Scale (SGFS).
• Preliminary interpretation guidelines were proposed for the SGFS.
• The SGFS demonstrates potential as an efficient assessment tool.

Conclusions:

• The SGFS is a promising first step in addressing support group leaders' needs.
• This scale can efficiently identify support groups requiring assistance.
• The SGFS may be used to assess the effectiveness of leader training interventions.