Exploring the experiences of adolescents and young adults with phenylketonuria and glycogen storage disease 1a through the healthcare transition
| dc.contributor.author | Palmer, Michaela | |
| dc.contributor.examiningcommittee | Halas, Gayle (School of Dental Hygiene) | |
| dc.contributor.examiningcommittee | Dart, Allison (Pediatrics and Child Health) | |
| dc.contributor.examiningcommittee | Napier, Melanie (Biochemistry and Medical Genetics) | |
| dc.contributor.supervisor | Frosk, Patrick | |
| dc.date.accessioned | 2023-07-25T18:47:18Z | |
| dc.date.available | 2023-07-25T18:47:18Z | |
| dc.date.issued | 2023-07-18 | |
| dc.date.submitted | 2023-07-18T14:00:07Z | en_US |
| dc.date.submitted | 2023-07-25T18:01:45Z | en_US |
| dc.degree.discipline | Biochemistry and Medical Genetics | en_US |
| dc.degree.level | Master of Science (M.Sc.) | |
| dc.description.abstract | The healthcare transition (HCT) is often precarious for patients diagnosed with chronic medical conditions as adolescent and young adult patients are required to independently manage their condition after relying heavily on parents for their disease management prior to the transition. The HCT is the coordinated and planned process that addresses the medical, psychosocial, and educational needs of patients as they transfer from pediatric to adult healthcare. The transition to adult care is significant due to the striking dissimilarities between the pediatric and adult care cultures. It is well known that patients with chronic diseases, such as inborn errors of metabolism (IEM), are at risk for declining disease management throughout the HCT, which is consequently associated with worse health outcomes. Patients with phenylketonuria (PKU) and glycogen storage disease 1a (GSD1a), two relatively common IEM characterized by a high management burden, are known to struggle with disease management during the HCT. Unfortunately, there are substantial gaps in our understanding of the patient-reported factors influencing readiness and capacity for disease management during the HCT, especially in patients with IEM. Due to the substantial effort associated with managing these conditions, patients with PKU and GSD1a have valuable knowledge regarding the factors influencing their management and the support they require to effectively navigate the HCT. Semi-structured interviews with participants identified that experiences with the HCT were highly variable among participants, though they similarly identified a lack of support and information from their healthcare providers. Participants also described feeling isolated by their condition which impacted their mental health. The complexity of participants’ evolving lives was an additional barrier to appropriate management as participants made management compromises to integrate their management with their everyday lives. Participants hoped to find balance between their management and mental health. Relationships with healthcare providers and parental involvement were also identified as highly influential on participants’ willingness and capacity for disease management. Overall, this study describes patients’ perceptions of the HCT and the factors influencing their management throughout the HCT. The data presented herein were foundational to generating patient-centred recommendations to improve the HCT and ultimately promoting better health outcomes for future patients. | |
| dc.description.note | October 2023 | |
| dc.identifier.uri | http://hdl.handle.net/1993/37428 | |
| dc.language.iso | eng | |
| dc.rights | open access | en_US |
| dc.subject | Genetics | |
| dc.subject | Patient-centered care | |
| dc.subject | Phenylketonuria | |
| dc.subject | Glycogen Storage Disease 1a | |
| dc.subject | Healthcare transition | |
| dc.subject | Self-management | |
| dc.subject | Emerging adulthood | |
| dc.title | Exploring the experiences of adolescents and young adults with phenylketonuria and glycogen storage disease 1a through the healthcare transition | |
| dc.type | master thesis | en_US |
| local.subject.manitoba | no |