Becoming a Rare Disease Parent
An Interpretative Phenomenological Analysis of Parent-Caregivers' Postpartum Experiences
Bibliographic Data
Rare diseases constitute a group of conditions that are individually rare, but in aggregate impact between 3 and 6% of the world population. Many of these conditions present during infancy and involve substantial caregiving responsibilities, often assessed via quantitative measurements. However, few qualitative analyses examine lived experiences of parent-caregivers during the early period of their child's life. The purpose of this study was to examine the meaning that rare disease parent-caregivers apply to the postpartum year using data collected from a semi-structured interview exploring significant experiences over the course of their affected child's life. We utilized an interpretative phenomenological analysis (IPA) approach to analyze 22 interview transcripts from caregivers to children with several inherited metabolic and mitochondrial disorders, as well as an undiagnosed disease. Our analysis yielded three superordinate themes: Reckoning With the Parent-Caregiver Role, Familial Transition, and Adaptation and Adjustment. Subordinate themes expanded upon these concepts and included distinctions between the parent and caregiving identity, communal coping and shifting of family dynamics, as well as meaning applied to child milestones, anticipatory grief, and parental perception of a new normal. Exploration of these themes in relation to existing literature, as well as future research directions for qualitative research on rare disease caregivers, is discussed. Overall, this work contributes to a growing body of literature exploring the parental experience of rare disease across several condition contexts
Developmental psychology · Disease · Interpretative phenomenological analysis · Perception · Population · Qualitative research · Sociology · Superordinate goals · BRCA gene mutations in cancer · Clinical Psychology · Genetic Syndromes and Imprinting · Genomics and Rare Diseases · Medicine · Psychology · Social Psychology
Estimating cumulative point prevalence of rare diseases
Communal Coping and Adjustment to Chronic Illness
Global birth prevalence and mortality from inborn errors of metabolism
The Role of Parent/Caregiver with Children Affected by Rare Diseases
Parental health spillover effects of paediatric rare genetic conditions
Achieving excellence in interpretative phenomenological analysis (IPA)
Primary Caregivers in a Network Context
Parenthood and Well‐Being
Adjustment to threatening events
The transition to parenthood as a critical window for adult health
The Biographical Illusion
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