Subtopic Deep Dive

Parent Perspectives in Healthcare Transition
Research Guide

What is Parent Perspectives in Healthcare Transition?

Parent Perspectives in Healthcare Transition examines parental experiences, concerns, and roles in supporting children's shift from pediatric to adult healthcare for chronic conditions.

Researchers apply qualitative methods to capture family viewpoints on barriers during care handoffs for adolescents with special needs. Studies highlight emotional burdens and policy gaps in transition support (Suris et al., 2004, 450 citations; Weissberg-Benchell et al., 2007, 267 citations). Over 20 papers from 2000-2018 address compliance, developmental issues, and family-centered strategies.

Curated Papers

Key Challenges

Why It Matters

Parent perspectives guide family-centered policies that ease emotional distress during pediatric-to-adult care transitions for youth with chronic illnesses like congenital heart disease and HIV (Mackie et al., 2009, 271 citations; Mellins & Malee, 2013, 356 citations). Insights inform interventions reducing dropout rates, as seen in compliance reviews for adolescents (Kyngäs et al., 2000, 271 citations). Real-world applications include tailored apps for self-management and service provision improvements (Majeed-Ariss et al., 2015, 283 citations; Sayal et al., 2017, 1133 citations).

Key Research Challenges

Limited Parent-Specific Data

Few studies isolate parent voices amid adolescent-focused research on chronic conditions. Surveys face methodological diversity in defining transitions (Suris et al., 2004). Qualitative gaps persist in rare disorders (von der Lippe et al., 2017).

High Follow-Up Dropout Rates

Children with congenital heart disease often lose continuity post-pediatrics due to unmet parent concerns. Follow-up duration remains understudied (Mackie et al., 2009). Compliance challenges compound during handoffs (Kyngäs et al., 2000).

Emotional and Developmental Barriers

Parents report heightened anxiety in emerging adulthood transitions for chronic illness youth. Mental health needs overlap with biomedical focus gaps (Mellins & Malee, 2013; Wood et al., 2017).

Essential Papers

ADHD in children and young people: prevalence, care pathways, and service provision

Kapil Sayal, Vibhore Prasad, David Daley et al. · 2017 · The Lancet Psychiatry · 1.1K citations

Emerging Adulthood as a Critical Stage in the Life Course

David L. Wood, Tara Crapnell, Lynette Lau et al. · 2017 · 518 citations

Abstract Emerging adulthood, viewed through the lens of life course health development, has the potential to be a very positive developmental stage with postindustrial societies giving adolescents ...

The adolescent with a chronic condition. Part I: developmental issues

J.-C. Suris, Pierre Michaud, Russell Viner · 2004 · Archives of Disease in Childhood · 450 citations

The prevalence of chronic conditions among adolescents is difficult to assess due to the lack of quality data focusing specifically on this age group, as well as the diversity in methodology and de...

Living with a rare disorder: a systematic review of the qualitative literature

Charlotte von der Lippe, Plata Sofie Diesen, Kristin Billaud Feragen · 2017 · Molecular Genetics & Genomic Medicine · 378 citations

Abstract Background Individuals with rare diseases may face challenges that are different from those experienced in more common medical conditions. A wide range of different rare conditions has res...

Understanding the mental health of youth living with perinatal HIV infection: lessons learned and current challenges

Claude A. Mellins, Kathleen Malee · 2013 · Journal of the International AIDS Society · 356 citations

Introduction Across the globe, children born with perinatal HIV infection (PHIV) are reaching adolescence and young adulthood in large numbers. The majority of research has focused on biomedical ou...

Social well‐being among adolescents and young adults with cancer: A systematic review

Echo L. Warner, Erin E. Kent, Kelly M. Trevino et al. · 2016 · Cancer · 351 citations

BACKGROUND A cancer diagnosis during adolescence or young adulthood may negatively influence social well‐being. The existing literature concerning the social well‐being of adolescents and young adu...

Treating juvenile idiopathic arthritis to target: recommendations of an international task force

Angelo Ravelli, Alessandro Consolaro, Gerd Horneff et al. · 2018 · Annals of the Rheumatic Diseases · 336 citations

Reading Guide

Foundational Papers

Start with Suris et al. (2004, 450 citations) for developmental issues in chronic adolescent conditions, then Weissberg-Benchell et al. (2007, 267 citations) for transition mechanics, and Kyngäs et al. (2000, 271 citations) for compliance basics.

Recent Advances

Study Wood et al. (2017, 518 citations) on emerging adulthood, Sayal et al. (2017, 1133 citations) on care pathways, and Majeed-Ariss et al. (2015, 283 citations) on app supports.

Core Methods

Qualitative analysis of parent interviews, systematic reviews of compliance, and surveys on follow-up rates using life course frameworks (Suris et al., 2004; Mackie et al., 2009).

How PapersFlow Helps You Research Parent Perspectives in Healthcare Transition

Discover & Search

Research Agent uses searchPapers and exaSearch to find 50+ papers on parent roles in transitions, starting with citationGraph on Suris et al. (2004, 450 citations), then findSimilarPapers for family perspectives in chronic care.

Analyze & Verify

Analysis Agent applies readPaperContent to extract parent quotes from Weissberg-Benchell et al. (2007), verifies claims via CoVe against Kyngäs et al. (2000), and runs PythonAnalysis for citation trend stats with GRADE scoring on evidence quality.

Synthesize & Write

Synthesis Agent detects gaps in parent compliance data across Mellins & Malee (2013) and Mackie et al. (2009); Writing Agent uses latexEditText, latexSyncCitations, and latexCompile to draft policy review sections with exportMermaid for transition pathway diagrams.

Use Cases

"Analyze compliance trends in parent-supported transitions for adolescent chronic diseases."

Research Agent → searchPapers → Analysis Agent → runPythonAnalysis (pandas on citation/compliance data from Kyngäs et al. 2000 and Sayal et al. 2017) → matplotlib plot of dropout rates.

"Draft LaTeX review on parent perspectives in congenital heart transitions."

Synthesis Agent → gap detection → Writing Agent → latexEditText + latexSyncCitations (Mackie et al. 2009, Weissberg-Benchell et al. 2007) → latexCompile → PDF with cited barriers diagram.

"Find code for modeling healthcare transition simulations from papers."

Research Agent → paperExtractUrls → Code Discovery → paperFindGithubRepo → githubRepoInspect → Python sandbox test of transition probability models linked to Majeed-Ariss et al. (2015).

Automated Workflows

Deep Research workflow scans 50+ papers via searchPapers on parent transitions, structures reports with GRADE grading on Suris et al. (2004) and Wood et al. (2017). DeepScan applies 7-step CoVe analysis to verify parent concern themes in Mellins & Malee (2013). Theorizer generates hypotheses on family policy impacts from Kyngäs et al. (2000) compliance data.

Try Doxa for Parent Perspectives in Healthcare Transition Research

Frequently Asked Questions

What defines Parent Perspectives in Healthcare Transition?

It covers parental experiences and roles in pediatric-to-adult care shifts for children with chronic conditions, using qualitative methods to identify barriers (Weissberg-Benchell et al., 2007).

What methods dominate this subtopic?

Qualitative interviews and surveys capture parent views; systematic reviews assess compliance and developmental issues (Kyngäs et al., 2000; von der Lippe et al., 2017).

What are key papers?

Suris et al. (2004, 450 citations) on developmental issues; Mackie et al. (2009, 271 citations) on follow-up losses; Sayal et al. (2017, 1133 citations) on ADHD pathways.

What open problems exist?

Isolating parent data from adolescent studies, reducing transition dropouts, and scaling family apps remain unsolved (Majeed-Ariss et al., 2015; Mellins & Malee, 2013).