scholarly journals Exploring a child's developmental diagnosis: an interpretive description of parents' experiences in northern British Columbia

2017 ◽  
Author(s):  
Tammy Pearson
Keyword(s):  
British Columbia ◽  
Interpretive Description ◽  
Parents Experiences

scholarly journals Understanding Parents’ Experiences Caring for a Child with Functional Constipation: Interpretive Description Study (Preprint)

2020 ◽  
Author(s):  
Alison P Thompson ◽  
Shannon E MacDonald ◽  
Eytan Wine ◽  
Shannon D Scott
Keyword(s):  
Information Needs ◽  
Medical Condition ◽  
Clinical Care ◽  
Functional Constipation ◽  
Evidence Base ◽  
Treatment Programs ◽  
Interpretive Description ◽  
Care Models ◽  
Digital Knowledge ◽  
Parents Experiences

BACKGROUND Pediatric functional constipation (FC) is a common but serious medical condition. Despite significant effects on children, families, and the healthcare system, the condition is typically undertreated. Parents carry primary responsibility for complex treatment programs; therefore, understanding their experiences and needs may offer a critical perspective towards improving clinical care. OBJECTIVE The initial aim of this study was to understand and give voice to parents’ experiences and information needs when caring for a child with FC. The ultimate objective was to build an evidence base suitable for creating a digital Knowledge Translation tool to better support parents caring for a child with FC. METHODS This qualitative design used Interpretive Description methodology to generate findings aimed towards improving clinical care. One-on-one, in-depth interviews were completed either in-person or via online teleconferencing to explore parents’ perspectives. Data collection and analysis occurred concurrently. RESULTS Analysis of sixteen interviews generated four major themes; 1) living in the shadows, 2) not taken seriously - with a subtheme of 2a) persevering and advocating, 3) missing information and misinformation, 4) self-doubt and strained relationships. One minor theme of affirmative influences foster resilience and hope was identified. CONCLUSIONS Parents have significant unmet needs for support and information related to pediatric FC. To address gaps in current care provision, decision-makers may consider interventions for clinicians, resources for parents, and shifting care models to better meet parents’ needs. CLINICALTRIAL

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