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Tough Transitions: Family Caregiver Experiences with a Pediatric Long Term Ventilation Discharge Pathway
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  • Jackie Chiang,
  • Allia Karim,
  • Andrea Hoffman,
  • Karen Dryden Palmer,
  • Krista Keilty,
  • Faiza Syed,
  • Joanna Janevski,
  • Tilak Dutta,
  • Maryanne Fellin,
  • Sally Lindsay,
  • Laura Beaune,
  • Reshma Amin
Jackie Chiang
The Hospital for Sick Children Department of Paediatrics
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Allia Karim
The Hospital for Sick Children Department of Paediatrics
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Andrea Hoffman
Holland Bloorview Kids Rehabilitation Hospital
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Karen Dryden Palmer
Hospital for Sick Children Research Institute
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Krista Keilty
Hospital for Sick Children
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Faiza Syed
The Hospital for Sick Children
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Joanna Janevski
The Hospital for Sick Children Department of Paediatrics
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Tilak Dutta
Toronto Rehab
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Maryanne Fellin
Holland Bloorview Kids Rehabilitation Hospital
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Sally Lindsay
Holland Bloorview Kids Rehabilitation Hospital
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Laura Beaune
Holland Bloorview Kids Rehabilitation Hospital
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Reshma Amin
The Hospital for Sick Children
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Abstract

Objectives: Discharging a child home on long term ventilation (LTV) via tracheostomy is complex and involves multiple healthcare providers across healthcare sectors. To date, patient and family feedback of a newly developed LTV discharge pathway has been anecdotal. Our objective was to explore the perceptions of family caregivers (FCs) that have completed the LTV pathway to home with respect to their: (1) experience with transitions across the pathway (2) perceptions of competency attainment and, (3) viewed opportunities for improvement. Methods: We conducted 11 semi structured interviews with FCs. Interviews focused on FCs experience with the training process, perception of competency from a knowledge and skill perspective and opportunities for improvement. Interviews were audiotaped, transcribed verbatim, coded and analyzed using an inductive thematic analysis approach. Results: Eight mothers and 3 fathers of 10 children participated. Six primary themes were identified: 1) making an informed decision, 2) transitioning to rehabilitation, 3) building capacity for self-care, 4) coordinating case management, 5) readying for discharge home and, 6) experiencing home care. Conclusion: Overall, FCs felt that the preparation and transition support obtained through the application of a standardized LTV discharge pathway allowed successful attainment of new knowledge and skills necessary to care for their child with LTV at home.

Peer review status:IN REVISION

29 Apr 2021Submitted to Pediatric Pulmonology
30 Apr 2021Submission Checks Completed
30 Apr 2021Assigned to Editor
01 May 2021Reviewer(s) Assigned
20 May 2021Review(s) Completed, Editorial Evaluation Pending
21 May 2021Editorial Decision: Revise Major
10 Jun 20211st Revision Received
17 Jun 2021Assigned to Editor
17 Jun 2021Reviewer(s) Assigned
17 Jun 2021Submission Checks Completed