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The purpose of this study is to explore the experiences of caregivers who are providing care to an adult family member who is living with mental illness in Windsor-Essex. We also aim to understand the needs of these caregivers to help them care for their ill family member; the information will be used to inform the programme for the Caring for the Caregiver Conference. Finally, we will explore the levels of satisfaction with the conference among caregivers.
Within the context of this project, a caregiver is a person who assists an adult relative/family member aged 18 years or older who is living with mental illness, in at least one of the following areas: "organizing, supervising or carrying out shopping, banking, bill payment, meal preparation and housekeeping; monitor[ing] symptoms, manag[ing] problematic behaviours, situations and crises; and provid[ing] companionship, and emotional and financial support". Additionally, a family caregiver may be involved in "providing housing and transportation; educating others about the illness; providing guidance around community resources, money management, personal safety, and hygiene; as well as encouraging and motivating their ill relative in many ways". The caregiver should be currently involved in the care of their family member for at least six months.
Part 1: You will be asked to complete a three-part online survey about your demographic information, general health and experiences of caring for a family member who is living with mental illness in the community. You will be asked information about age, gender identity, the diagnosis of your family member living with mental illness, your relationship to the ill family member, living arrangements, your employment situation (full-time or part-time), the length of time you have been providing care or support and the average number of care hours per week. The survey will also ask about your perceptions regarding your general health, as well as things which other people have found happen to them while caring for an ill family member. If you volunteer to participate, you will be asked to complete 63 questions in total, and an open-ended question that will ask you about the kind of supports or assistance you may need to care for your ill family member. It will take you approximately 20 to 25 minutes to complete the survey. You will not receive any payment for participating in this study. The survey may be done from anywhere with internet access, therefore you may complete this survey in a location of your choice, including at home. You will have the option of refraining from answering any question you do not wish to answer without penalty. You may withdraw your consent to participate at any time without penalty by simply closing your web browser and not submitting your survey responses.
Part 2: You will be asked to complete a 30 to 60-minute interview. Interview questions will include information about your age, gender identity, the diagnosis of your family member living with mental illness, your relationship to the ill family member, living arrangements, employment situation (full-time or part-time), the challenges you experience as a caregiver, your coping strategies when confronted with challenges related to the care of your family member, the kinds of supports you think will be met by a caregiver conference, and any other suggestions you would like for us to take into consideration as we plan for the conference. In consideration of the current COVID-19 pandemic, the interview will be carried out online using Microsoft Office Teams, or by phone. The interview will be audio-recorded. You will have the option of not answering any questions you do not wish to answer without penalty. You may withdraw your consent to participate at any time until one week after the interview.
