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Families' healthcare experiences for children with inherited metabolic diseases: protocol for a mixed methods cohort study.
Chow, Andrea J; Iverson, Ryan; Lamoureux, Monica; Tingley, Kylie; Jordan, Isabel; Pallone, Nicole; Smith, Maureen; Al-Baldawi, Zobaida; Chakraborty, Pranesh; Brehaut, Jamie; Chan, Alicia; Cohen, Eyal; Dyack, Sarah; Gillis, Lisa Jane; Goobie, Sharan; Graham, Ian D; Greenberg, Cheryl R; Grimshaw, Jeremy M; Hayeems, Robin Z; Jain-Ghai, Shailly; Jolly, Ann; Khangura, Sara; MacKenzie, Jennifer J; Major, Nathalie; Mitchell, John J; Nicholls, Stuart G; Pender, Amy; Potter, Murray; Prasad, Chitra; Prosser, Lisa A; Schulze, Andreas; Siriwardena, Komudi; Sparkes, Rebecca; Speechley, Kathy; Stockler, Sylvia; Taljaard, Monica; Teitelbaum, Mari; Trakadis, Yannis; van Karnebeek, Clara; Walia, Jagdeep S; Wilson, Brenda J; Wilson, Kumanan; Potter, Beth K.
Afiliação
  • Chow AJ; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Iverson R; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Lamoureux M; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Tingley K; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Jordan I; Patient Partner, Squamish, British Columbia, Canada.
  • Pallone N; Patient Partner, Canadian PKU & Allied Disorders Inc, Toronto, Ontario, Canada.
  • Smith M; Patient Partner, Canadian Organization for Rare Disorders, Toronto, Ontario, Canada.
  • Al-Baldawi Z; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Chakraborty P; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Brehaut J; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada.
  • Chan A; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Cohen E; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Dyack S; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
  • Gillis LJ; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
  • Goobie S; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Graham ID; Division of Pediatric Medicine, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Greenberg CR; Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Grimshaw JM; Department of Medicine, Johns Hopkins All Children's Hospital, St Petersburg, Florida, USA.
  • Hayeems RZ; Division of Medical Genetics, Department of Pediatrics, Dalhousie University, Halifax, Nova Scotia, Canada.
  • Jain-Ghai S; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Jolly A; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Khangura S; Rady Faculty of Health Sciences, Max Rady College of Medicine, Department of Pediatrics and Child Health, University of Manitoba, Winnipeg, Manitoba, Canada.
  • MacKenzie JJ; Children's Hospital Research Institute of Manitoba, Winnipeg, Manitoba, Canada.
  • Major N; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Mitchell JJ; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada.
  • Nicholls SG; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, Ontario, Canada.
  • Pender A; Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, ON, Canada.
  • Potter M; Department of Medical Genetics, University of Alberta, Edmonton, Alberta, Canada.
  • Prasad C; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Prosser LA; Contagion Consulting Group, Ottawa, Ontario, Canada.
  • Schulze A; School of Epidemiology and Public Health, University of Ottawa, Ottawa, Ontario, Canada.
  • Siriwardena K; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • Sparkes R; Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada.
  • Speechley K; Department of Pediatrics, University of Ottawa, Ottawa, Ontario, Canada.
  • Stockler S; Division of Pediatric Endocrinology, Department of Pediatrics, Montreal Children's Hospital, Montreal, Quebec, Canada.
  • Taljaard M; Clinical Epidemiology Program, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Teitelbaum M; Ottawa Methods Centre, Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
  • Trakadis Y; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • van Karnebeek C; Hamilton Health Sciences, McMaster Children's Hospital, Hamilton, Ontario, Canada.
  • Walia JS; Department of Pathology and Molecular Medicine, McMaster University, Hamilton, Ontario, Canada.
  • Wilson BJ; Department of Pediatrics, Western University, London, Ontario, Canada.
  • Wilson K; Department of Pediatrics, Susan B. Meister Child Health Evaluation and Research Center, University of Michigan, Ann Arbor, Michigan, USA.
  • Potter BK; Department of Pediatrics, University of Toronto, Toronto, Ontario, Canada.
BMJ Open ; 12(2): e055664, 2022 Feb 22.
Article em En | MEDLINE | ID: mdl-35193919
ABSTRACT

INTRODUCTION:

Children with inherited metabolic diseases (IMDs) often have complex and intensive healthcare needs and their families face challenges in receiving high-quality, family centred health services. Improvement in care requires complex interventions involving multiple components and stakeholders, customised to specific care contexts. This study aims to comprehensively understand the healthcare experiences of children with IMDs and their families across Canada. METHODS AND

ANALYSIS:

A two-stage explanatory sequential mixed methods design will be used. Stage 1 quantitative data on healthcare networks and encounter experiences will be collected from 100 parent/guardians through a care map, 2 baseline questionnaires and 17 weekly diaries over 5-7 months. Care networks will be analysed using social network analysis. Relationships between demographic or clinical variables and ratings of healthcare experiences across a range of family centred care dimensions will be analysed using generalised linear regression. Other quantitative data related to family experiences and healthcare experiences will be summarised descriptively. Ongoing analysis of quantitative data and purposive, maximum variation sampling will inform sample selection for stage 2 a subset of stage 1 participants will participate in one-on-one videoconference interviews to elaborate on the quantitative data regarding care networks and healthcare experiences. Interview data will be analysed thematically. Qualitative and quantitative data will be merged during analysis to arrive at an enhanced understanding of care experiences. Quantitative and qualitative data will be combined and presented narratively using a weaving approach (jointly on a theme-by-theme basis) and visually in a side-by-side joint display. ETHICS AND DISSEMINATION The study protocol and procedures were approved by the Children's Hospital of Eastern Ontario's Research Ethics Board, the University of Ottawa Research Ethics Board and the research ethics boards of each participating study centre. Findings will be published in peer-reviewed journals and presented at scientific conferences.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Atenção à Saúde / Doenças Metabólicas Tipo de estudo: Etiology_studies / Guideline / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Limite: Child / Humans Idioma: En Ano de publicação: 2022 Tipo de documento: Article
Texto completo
Imprimir
XML
PubMed Links
Buscar no Google

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Assunto principal: Atenção à Saúde / Doenças Metabólicas Tipo de estudo: Etiology_studies / Guideline / Incidence_studies / Observational_studies / Qualitative_research / Risk_factors_studies Limite: Child / Humans Idioma: En Ano de publicação: 2022 Tipo de documento: Article