June 1, 2020
The College of Nursing, Rady Faculty of Health Sciences at the University of Manitoba, is conducting a study with a team of researchers from the University of Manitoba, as well as other organizations and hospitals in Canada and internationally and is seeking Manitoba families to participate in their study. The name of the study is Designing a Responsive and Integrative Model of Respite Care for Families of Children with Complex Care Needs and Conditions (CCNC) through Patient-Oriented Research. The purpose of the study is to learn from family members about their experiences and needs in order to improve respite care services. The study is funded by the Canadian Institutes of Health Research and has been approved by the University of Manitoba Health Research Ethics Board.
They are inviting families of children requiring respite care to participate in the study. Involvement in this study is strictly voluntary, and participants will receive an honorarium. Families will be asked to participate in two digitally recorded interview sessions and an arts-based activity called photovoice. Each interview will last between 1-2 hours. In response to the COVID-19 pandemic, these interviews will take place via video call. If that is not possible, then interviews will take place over the phone. Once social distancing rules have been lifted, interviews will take place in-person.
In the first session:
The primary caregiver of the family (e.g., mother, father) will be asked to fill out a form and answer some questions about their family and the respite services they receive. Each caregiver will then be asked to participate in an interview to talk about their experiences with respite care services. They will be asked questions on what is working well with respite care services, what is not working well, what should remain the same, and what changes should be made to respite care services. Examples of the types of questions that will be asked include:
- Can you please describe what the ideal system of respite service would look like for your family?
- What changes do you think are needed in order for current respite services to match this ideal?
At the end of this interview, family members will be asked to take photos of people, places and things that represent their daily life experiences and record oral narratives explaining what is in each photo using PixStori, a free photography app that can be used with an iPod Touch, iPad, or iPhone device. If participants do not own a device, an iPod Touch will be provided.
In the second session:
Family members will participate together in a family group interview. They will be asked questions about their photos, including why the photos were taken, what can be explained from the photos, how they relate to their lives, and how they relate to improving respite care services.
Participation in the study will take place over 5-7 weeks. Involvement in this study, including identities and the data collected, will be kept confidential, unless participants choose to allow the PixStoris they create (photographs with accompanying captions and/or oral narratives) that contain identifying information to be shared with others.
After the interviews are completed, researches plan to apply the input from families to the design of a responsive and integrative model of families of children requiring respite. All reports and products derived from this study will be shared with health care and educational professionals, community groups, policy makers, service providers, and other researchers. Participants can also receive a brief summary of the study findings.
The study specifics are explained in greater detail in a consent form that will be provided prior to the interview, should you choose to participate.
If you are interested in our study and/or have any questions, concerns, or need additional information, please contact Heidi Pylypjuk at 204-480-1051 or by email at heidi.pylypjuk@umanitoba.ca. You may also contact Dr. Roberta L. Woodgate at 204-474-8338 or by email at roberta.Woodgate@umanitoba.ca.