Research map: Care Coordination Experiences of Whole Families Caring for Children With Medical Complexity in Rural Areas

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  1. Toward an experimental ecology of human development. · Urie Bronfenbrenner · 1977 · 10432 citations · Cited by this paper
  2. Co‐Creation of a Study Protocol to Assess the Effect of Transcranial Direct Current Stimulation in the Management of Fatigue in Children and Young People With Acquired Brain Injury (Fatiguebrain‐tDCS) · 2026 · Related
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  13. Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays · APSU Rare Diseases Impacts on Families Study group · 2017 · 245 citations · Cited by this paper
  14. Living With COPD and Views on Digital Health Tools Among Pacific Peoples and Family Carers in Aotearoa New Zealand: A Qualitative Study · 2026 · Related
  15. Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs · Roberta Lynn Woodgate · 2015 · 227 citations · Cited by this paper
  16. Powerless or Powerful? Healthcare Professionals' Construction of Agency in Patient and Family Engagement Accounts · 2026 · Related
  17. Integrated complex care coordination for children with medical complexity: A mixed-methods evaluation of tertiary care-community collaboration · Eyal Cohen · 2012 · 175 citations · Cited by this paper
  18. Impact of a Health Research Training Program on Patient and Community Partners, and Researchers: A Qualitative Evaluation · 2026 · Related
  19. The challenges of caring for children who require complex medical care at home: ‘The go between for everyone is the parent and as the parent that’s an awful lot of responsibility’ · Bethan F. Page · 2020 · 163 citations · Cited by this paper
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  21. Doing Interview-based Qualitative Research · Eva Magnusson · 2015 · 160 citations · Cited by this paper
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  23. “It is like a jungle gym, and everything is under construction”: The parent's perspective of caring for a child with a rare disease · Genevieve Currie · 2018 · 124 citations · Cited by this paper
  24. Developing an analytical framework for multiple perspective, qualitative longitudinal interviews (MPQLI) · Susanne Vogl · 2017 · 118 citations · Cited by this paper
  25. Families’ Priorities Regarding Hospital-to-Home Transitions for Children With Medical Complexity · JoAnna K. Leyenaar · 2016 · 117 citations · Cited by this paper
  26. Estimating the prevalence of chronic conditions in children who die in England, Scotland and Wales: a data linkage cohort study · Pia Hardelid · 2014 · 116 citations · Cited by this paper
  27. ‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases · Genevieve Currie · 2019 · 99 citations · Cited by this paper
  28. Hidden caring, hidden carers? Exploring the experience of carers for people with long‐term conditions · Sarah E. Knowles · 2015 · 97 citations · Cited by this paper
  29. The impacts of distance to hospital on families with a child with a chronic condition · Nicole Marie Yantzi · 2001 · 95 citations · Cited by this paper
  30. Parent Perspective on Care Coordination Services for Their Child with Medical Complexity · RHONDA G. CADY · 2017 · 78 citations · Cited by this paper
  31. Strengths-Based Approaches in Social Work and Social Care: Reviewing the Evidence · James Caiels · 2021 · 76 citations · Cited by this paper
  32. The Experience of Parental Caregiving for Children With Medical Complexity · Jessica Teicher · 2022 · 70 citations · Cited by this paper
  33. Siblings of children with complex care needs: their perspectives and experiences of participating in everyday life · Roberta Lynn Woodgate · 2016 · 68 citations · Cited by this paper
  34. Living with a Rare Disease: Psychosocial Impacts for Parents and Family Members – a Systematic Review · Jenny C. Atkins · 2024 · 65 citations · Cited by this paper
  35. Measuring the financial and productivity burden of paediatric hospitalisation on the wider family network · Virginia Mumford · 2018 · 60 citations · Cited by this paper
  36. Association Between Children With Life-Threatening Conditions and Their Parents’ and Siblings’ Mental and Physical Health · Chris Feudtner · 2021 · 59 citations · Cited by this paper
  37. Significant reductions in tertiary hospital encounters and less travel for families after implementation of Paediatric Care Coordination in Australia · Christie Breen · 2018 · 58 citations · Cited by this paper
  38. “You Know the Medicine, I Know My Kid”: How Parents Advocate for Their Children Living With Complex Chronic Conditions · Katherine A. Rafferty · 2016 · 51 citations · Cited by this paper
  39. Have Families Been Rethought? Ethic of Care, Family and ‘Whole Family’ Approaches · Lesley J. Murray · 2010 · 46 citations · Cited by this paper

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