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Development of the Community-Based Program Family GOALS (Family Goals for Achieving Lifelong Self-Care) to Promote the Self-Care Participation of Families with a Child or Children on the Autism Spectrum: A Pilot Study


We are inviting you to participate in a research study. This research study will test the program, Family GOALS (Family Goals for Achieving Lifelong Self-Care), in order to discover if this program can both support and improve the self-care participation of families with a child or children on the Autism Spectrum.

What does this study involve?

Family GOALS is a community-based program or Community of Practice (CoP) that caters to families with a child/ children on the Autism Spectrum. The mission of Family GOALS is to create an open environment in which professional and family-to-family support can help families discover resources and cultivate diverse (develop different) strategies to improve upon their self-care. The lifelong vision is to enable communities of families to become empowered as they attain positive health and wellness in order to nurture themselves on their journeys as caregivers and individuals who are a valued part of the community. Families who are a part of Family GOALS convene once weekly for 5 weeks for a total of 45-minutes each session.

The format of this program, Family GOALS, is specially tailored to meet families where they are at in their self-care including defining the self-care activities that are meaningful to them and planning how they will do their self-care. Within each of the 5 sessions there is a focus on guiding families through an active and staged process in learning to dedicate the time, place, and space to do their self-care, which is currently an unmet need. Participants will also reflect in a weekly journal based on the topics of discussion.

Procedure for Completing the Questionnaire

As part of this study, you will be asked to sign a consent form to indicate your willingness to participate in the study. You will be asked to complete four assessments for this program, however only three of these assessments are included in the pre-program questionnaire. These three assessments include:

a) Families Assessment of Quality Engagement in Self-Care (FAQ-Self Care)

-An assessment developed by the investigator to assess the factors that influence families’ participation in self-care

b) a Supplemental Survey

-This will be used to collect information on families’ demographics, e.g., number of children within household and number of children on the Autism Spectrum, families’ perceptions of their current self-care participation, and gain a detailed picture of the unique life factors that affect families’ participation in self-care

and c) A Knowledge, Beliefs, and Actions (KBA) Survey

-To assess families’ beliefs about their self-care, the actions that they have taken to support their self-care, and self-care knowledge. This assessment will also be used in the Post-Program Reflection to assess the changes that have occurred with families’ knowledge, beliefs, and/ or actions that support their self-care.

d) The Canadian Occupational Performance Measure (COPM)

-The COPM will be used to help families create self-care goals within the program (session two). After the course of the following three sessions, the COPM will be revisited to help families reflect on changes in their self-care.

Pre-and Post-Program assessments should take approximately 20 minutes to complete. At the end of the Pre-Program questionnaire, we will also ask you to agree with the community agreement at the start of the program to ensure that your family's privacy is maintained at all times and the information that is shared is not disclosed or discussed outside of this program.

How anonymity of data and confidentiality will be ensured?

For group discussions, a community agreement will be provided to you to prevent unwanted sharing of personal information outside of this program. This agreement will be upheld by all members within the program including members of the research team.

The study team also plans to protect your privacy by making sure your survey responses are not easily identified and cannot be traced back to you. All sensitive information, e.g., name, location, will be removed from your responses and separated from your name or any other information that can identify you. Your responses will be assigned a unique identifier on a secure (safe), encrypted Excel file and Columbia's secure server. Only the investigators and study staff will have access to this file.

The following individuals and/or agencies will be able to access (look at and copy) and/ or use your research records:

The investigators, Dr. Rochelle Mendonca, PhD, OTR/L and Valencia Steele, MS, OTR/L at Columbia University's Programs in Occupational Therapy, Department of Regenerative and

To take part please complete the Family GOALS Pre-Program CUIMC Qualtrics Consent Form and Questionnaire (To be completed one week before the first session) which can be accessed here.

The following is to be completed after the fifth (Final session). Family GOALS Post-Program Reflection CUIMC Qualtrics Questionnaire. Please access here.