The experience of patient-centered care for autistic adults: communication, relationships, diversity, and tension
| dc.contributor.author | Wright, M. Michelle | |
| dc.contributor.examiningcommittee | Jakobson, Lorna (Psychology) | |
| dc.contributor.examiningcommittee | Yu, C.T. (Psychology) | |
| dc.contributor.examiningcommittee | Roger, Kerstin (Community Health Sciences) | |
| dc.contributor.examiningcommittee | Stone, Mark (Deakin University) | |
| dc.contributor.supervisor | Montgomery, Janine | |
| dc.date.accessioned | 2023-12-20T15:25:19Z | |
| dc.date.available | 2023-12-20T15:25:19Z | |
| dc.date.issued | 2023-12-19 | |
| dc.date.submitted | 2023-12-19T19:47:45Z | en_US |
| dc.date.submitted | 2023-12-20T01:58:15Z | en_US |
| dc.degree.discipline | Psychology | en_US |
| dc.degree.level | Doctor of Philosophy (Ph.D.) | |
| dc.description.abstract | Patient-centered care is the predominant modern healthcare framework, focusing on healthcare communication and relationships, and understanding of patients wholistically as persons, all of which have been found to be beneficial to patient experiences and objective health outcomes in the general population. However, communication, relationships, and being understood by others is often challenging for autistic adults, and consequently they may differ in their experience of patient-centred care compared to the non-autistic general population. In the present study autistic adults’ experiences in healthcare were examined through online open-ended long-answer questions about their experiences navigating healthcare, including communication, relationships, and what they wanted others to understand about them. Responses were coded using constant comparison analysis within the Grounded Theory framework. A limited number of content level themes emerged across participants, such as needing more time for the clinical encounter, wanting a strong relationship with their healthcare provider, and needing communication accommodations and modifications - all of which are consistent with the growing autistic informed literature on healthcare experiences. However, more complex over-arching themes emerged with respect to the tension between diversity and dichotomous experiences (e.g., tension between disclosing diagnosis at the risk of receiving marginalizing responses vs not disclosing diagnosis at the expense of support and accommodation; tension between factors of intergroup diversity and intragroup diversity), and the impact that healthcare interactions have on autistic patients. Discussion of these experiences is presented for deeper understanding of the complexity of the autistic healthcare experience. Implications for a) patient-initiated tools and accommodations and b) healthcare provider training are discussed. | |
| dc.description.note | February 2024 | |
| dc.identifier.uri | http://hdl.handle.net/1993/37882 | |
| dc.language.iso | eng | |
| dc.rights | open access | en_US |
| dc.subject | Autism | |
| dc.subject | Patient-Centred Care | |
| dc.subject | Grounded Theory | |
| dc.subject | Knowledge Translation | |
| dc.subject | Healthcare Experiences | |
| dc.title | The experience of patient-centered care for autistic adults: communication, relationships, diversity, and tension | |
| dc.type | doctoral thesis | en_US |
| local.subject.manitoba | no | |
| oaire.awardTitle | Manitoba Mental Health Foundation PhD Studentship | |
| project.funder.name | Research Manitoba |