Life story of Iranian parents of a child with phenylketonuria: a qualitative study

Mardani-Hamooleh, Marjan; Heidari, Haydeh

doi:10.1007/s12687-023-00653-z

J Community Genet

2023

DOI: 10.1007/s12687-023-00653-z

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Life story of Iranian parents of a child with phenylketonuria: a qualitative study

Marjan Mardani-Hamooleh

Haydeh Heidari

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2024

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A Qualitative Investigation into the Determinants of Unfulfilled Needs in Caregivers of Patients with Phenylketonuria

Zheng,

Hou,

Zhao

et al. 2024

PPA

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Objective To conduct an in-depth exploration of the factors influencing unfulfilled needs in caregivers of patients with phenylketonuria. Methods A rapid qualitative analysis approach was used to conduct semi-structured interviews with 16 caregivers of patients with phenylketonuria undergoing specialized dietary interventions, along with 5 medical professionals, within a designated phenylketonuria diagnosis and treatment center in Shanxi Province. Interview data were systematically organized, analyzed, and thematically extracted. Results Four primary themes were extracted: self-imposed constraints (including insufficient caregiver engagement, economic limitations, and stigma); interpersonal constraints (encompassing social isolation, inadequate social support networks, and lack of doctor-patient interactions); structural limitation factors (inadequate provision of specialized professional support systems, lack of medical dietary supplements, and deficiencies in national policies); and experiential limitation factors (encompassing sensory perceptions of medical dietary supplements and insufficient continuity in psycho-emotional care). Conclusion The unfulfilled needs of caregivers of patients with phenylketonuria primarily manifest across four dimensions. Greater emphasis on addressing these needs is warranted, necessitating increased attention to patients with phenylketonuria and their caregivers. Specifically, the focus should be directed toward addressing their emotional requirements, along with proactive development of the medical service infrastructure. Such measures are imperative for reducing unfulfilled needs among caregivers of patients and enhancing their prognosis.

show abstract

A Qualitative Investigation into the Determinants of Unfulfilled Needs in Caregivers of Patients with Phenylketonuria

Zheng,

Hou,

Zhao

et al. 2024

PPA

View full text Add to dashboard Cite

show abstract

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Life story of Iranian parents of a child with phenylketonuria: a qualitative study

Cited by 1 publication

References 36 publications

A Qualitative Investigation into the Determinants of Unfulfilled Needs in Caregivers of Patients with Phenylketonuria

A Qualitative Investigation into the Determinants of Unfulfilled Needs in Caregivers of Patients with Phenylketonuria

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