"Is it going to hurt?": The impact of patient-provider interactions on children and their families during the diagnostic odyssey

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dc.contributor.advisor Estrella, Elicia
dc.contributor.author Carmichael, Nikkola
dc.date.accessioned 2013-05-28T20:16:40Z
dc.date.available 2013-05-28T20:16:40Z
dc.date.issued 2013
dc.identifier.uri http://hdl.handle.net/10192/25122
dc.description.abstract Pharmaceutical and therapeutic interventions to manage child distress are rarely offered to children undergoing minor medical procedures (such as venipuncture) despite overwhelming evidence that children find these procedures to be distressing. Reducing distress during medical appointments and procedures is crucial both for avoiding anticipatory anxiety before future procedures, and for improving the patient’s willingness to access healthcare as an adult. The purpose of this qualitative study was to document the experiences of children experiencing multiple procedures during their diagnostic odyssey. We interviewed ten parents of children with neuromuscular disorders using a semi-structured interview guide to elicit information regarding the perceived benefits of obtaining a diagnosis, the child’s experiences with different medical procedures, and parental perceptions (positive or negative) of their interactions with healthcare providers. We coded interviews based on a priori and emergent themes, and analyzed them based on the principles of interpretive description. Three common themes emerged: (1) Having a diagnosis reduced strain on parents by validating their concerns, by enabling them to plan for the child’s future healthcare needs, and by allowing them to access established support networks. (2) Parents reported that even “minor” procedures, such as venipuncture and x-rays, were distressing for some children. Interventions were rarely offered for these procedures, and half of the parents did not believe that providers were aware that the child was distressed. (3) Parents did not see themselves as passive recipients of medical care, but as active and experienced members of their child’s healthcare team. They preferred providers who listened to their concerns and spoke to them respectfully. While medical procedures are often distressing for children, they are a vital component of reaching a diagnosis. By asking parents about a child’s previous experiences, healthcare providers can identify those who would benefit from interventions. Furthermore, parents value the additional support available upon diagnosis. Facilitating communication with parents, a role that genetic counselors are well-suited for due to their training, may enable healthcare providers to offer more support to families during the diagnostic odyssey.
dc.description.sponsorship Brandeis University, Graduate School of Arts and Sciences
dc.format.mimetype application/pdf
dc.language English
dc.language.iso eng
dc.publisher Brandeis University
dc.relation.ispartofseries Brandeis University Theses and Dissertations
dc.rights Copyright by Nikkola Carmichael 2013
dc.subject diagnostic odyssey
dc.subject neuromuscular disorder
dc.subject anticipatory anxiety
dc.subject medical procedures
dc.subject distress
dc.subject venipuncture
dc.subject EMLA cream
dc.title "Is it going to hurt?": The impact of patient-provider interactions on children and their families during the diagnostic odyssey
dc.type Thesis
dc.contributor.department Graduate Program in Genetic Counseling
dc.degree.name MS
dc.degree.level Masters
dc.degree.discipline Genetic Counseling
dc.degree.grantor Brandeis University, Graduate School of Arts and Sciences


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