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Part 2 - 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. Occupational Therapy Practitioners with expertise in the field or wellness or self-care, in addition to having one or more years of experience supporting families with children on the Autism Spectrum, are invited to review the Family Goals for Achieving Lifelong Self-Care (Family GOALS) program. The purpose of this study is to have Occupational Therapists review Family GOALS program-related content and materials to ensure of the quality as well as strength of this program in addressing families’ self-care.

A zip file will be provided after consent has been obtained. Occupational Therapists can contact the primary researcher, Valencia Steele, MS, OTR/L to receive the zip file.([email protected])

What does this study involve?

Occupational Therapists will have approximately 1 week to review the content and activities that are a part of the Family GOALS Program. All participants will be given a consent form where you can autonomously decide about your participation in this research study. Upon consent, you will be able to review the full Family GOALS program. To review this program, you will be able to access program-related files through the survey platform, Qualtrics. A zip file with PowerPoints for the Family GOALS program will also be provided once consent is obtained. Upon your review, a Doodle Poll will also be provided to determine the date and time that will work best for each therapist to meet via Columbia University’s Zoom Platform. Once the date and time has been confirmed, you will receive an invitation to a one-time, 2-hour virtual conference through Columbia University’s (CUIMC) Zoom Platform. On Zoom, we will discuss your perceptions and/ or thoughts about Family GOALS with this researcher and 4-6 Occupational Therapists. Semi-structured questions will be provided by this researcher to engage participants in an open dialogue.

This Zoom session will be audio recorded. Prior to the audio recording each Occupational Therapist will randomly select a pseudonym to ensure that your identity remains concealed. These pseudonyms will be referred to and used throughout the discussion that will take place. Additionally, at any time before or during this study your participation will remain completely voluntary. You may choose consent or not consent, choose which questions you would like to respond to during the Zoom session, or discontinue your participation throughout the course of this study.

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. Upon your consent, you will be asked to review four assessments, program-related activities, and five PowerPoints. The assessments include:

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

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

b) a Supplemental Survey

-A survey 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

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

-An 11-itemed survey that supports families’ in reflecting on their beliefs about their self-care, the actions that they have taken to support their self-care, and self-care knowledge.

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.

How anonymity of data and confidentiality will be ensured?

The 2-hour Zoom meeting will be audio recorded, only. Prior to audio recording a formal introduction will occur where focus group experts will use pseudonyms to de-identify experts. After deciding on pseudonyms, these pseudonyms will be referred to and used throughout the audio recorded discussion. The audio recording(s) will be used for analysis by the research team. The recording(s) will include experts’ pseudonyms and content related to the discussion and review of the Family GOALS program.

The audio recording(s) will be stored on Columbia University's OneDrive account. The audio recording(s) will be used for the sole purpose of data transcription and will be immediately destroyed after use. Data will be destroyed/ discarded within no more than a 3-month period after data transcription.

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 Rehabilitative Medicine Columbia University Medical Center, Vagelos Physicians and Surgeons School of Medicine.

Authorities from Columbia University and New York-Presbyterian Hospital, including the Institutional Review Board ('IRB') and the Office of Human Research Protections (OHRP). The OHRP is organized to protect the rights and welfare (health/safety and well-being) of people involved in research.

Additionally, the IRB makes sure that all people are provided with the best intervention programs or treatments that are supported by up-to-date and morally sound (accepted and truthful) evidence.

Deadline for completion/closure of survey

The completion of the program review and one-day, 2-hour CUIMC Zoom session will occur on or before March 5th, 2023