Exploring the experiences of family caregivers with low income accessing health care services for children with inborn errors of metabolism
| dc.contributor.author | Chimney, Katherine | |
| dc.contributor.examiningcommittee | Napier, Melanie (Biochemistry and Medical Genetics) | en_US |
| dc.contributor.examiningcommittee | Reynolds, Kristin (Psychology) | en_US |
| dc.contributor.examiningcommittee | Rockman-Greenberg, Cheryl (Pediatrics and Child Health) | en_US |
| dc.contributor.supervisor | Mhanni, Aizeddin | |
| dc.date.accessioned | 2022-08-30T14:56:55Z | |
| dc.date.available | 2022-08-30T14:56:55Z | |
| dc.date.copyright | 2022-08-14 | |
| dc.date.issued | 2022-08-14 | |
| dc.date.submitted | 2022-08-14T17:32:11Z | en_US |
| dc.degree.discipline | Biochemistry and Medical Genetics | en_US |
| dc.degree.level | Master of Science (M.Sc.) | en_US |
| dc.description.abstract | Inborn errors of metabolism (IEMs) have been shown to impact the wellbeing of family caregivers, with more challenges experienced by families with lower income. The main objective of this study was to gain understanding of the experiences of family caregivers with low income accessing diagnosis-related care for their children with IEMs in Manitoba. Secondary objectives included: (1) To explore the factors that facilitate or cause difficulties accessing IEM-related care, (2) To explore the perceived impact of the COVID-19 pandemic on family caregivers’ experiences of accessing IEM-related care, and (3) To compare the experiences of accessing IEM-related care for urban and rural families. This mixed methods study involved the distribution of a survey to 98 family caregivers of children with IEMs who access care in Manitoba. Additionally, we conducted eight semi-structured individual interviews with survey respondents to further explore the experiences of these family caregivers. These qualitative interviews were transcribed, coded, and analyzed to identify themes and make recommendations to improve access to care. Twenty-five surveys were returned, and descriptive statistics are presented on the experiences of these study participants. Additionally, qualitative analysis revealed that participants found caregiving was overwhelming and consuming especially throughout the first year following a positive newborn screen. Participants expressed that they were lacking psychosocial support as well as assistance with navigating financial resources. Participants also recognized many costs of care, shared experiences outlining difficulties in accessing care, and described changes in care due to the COVID-19 pandemic. This research reveals the unmet needs of family caregivers of children with IEMs in Manitoba, especially in the psychosocial and financial domains. Study findings will enable genetic counsellors to advocate for equitable access to metabolic care in Manitoba and beyond. | en_US |
| dc.description.note | October 2022 | en_US |
| dc.description.sponsorship | University of Manitoba | en_US |
| dc.identifier.uri | http://hdl.handle.net/1993/36805 | |
| dc.language.iso | eng | en_US |
| dc.rights | open access | en_US |
| dc.subject | inborn errors of metabolism | en_US |
| dc.subject | family caregiving | en_US |
| dc.subject | low income | en_US |
| dc.subject | health equity | en_US |
| dc.subject | grounded theory | en_US |
| dc.title | Exploring the experiences of family caregivers with low income accessing health care services for children with inborn errors of metabolism | en_US |
| dc.type | master thesis | en_US |
| local.subject.manitoba | yes | en_US |
| oaire.awardTitle | Master's Award: Canada Graduate Scholarships | en_US |
| project.funder.identifier | https://doi.org/10.13039/501100000024 | en_US |
| project.funder.name | Canadian Institutes of Health Research | en_US |