Advertisement

Parent education programs for children assisted by invasive mechanical ventilation: A scoping review

      Highlights

      • Most education programs for parents of children with IMV focus on caregiving skills.
      • Program characteristics vary widely and evidence for effectiveness is limited.
      • Positive gains in primary parent and child outcome measures are reported.
      • Opportunities exist to optimize parent education for children assisted by IMV.

      Abstract

      Problem

      The population of children assisted by invasive mechanical ventilation (IMV) and living at home is growing. Although parent education is essential for safe transitions from hospital-to-home, little is known about how this education is delivered. The aim of this review is to identify existing literature about parent education programs, synthesize the evidence, and identify gaps in the literature for future inquiry.

      Eligibility criteria

      This scoping review was conducted in accordance with the Joanna Briggs Institute methodology. Full-text publications in the English language focused on describing parent education programs for children assisted by IMV, indexed in CINAHL, PubMed, OVID, and PsycINFO and published from 2010 to 2021 were included. Reference lists of relevant articles were reviewed, and a hand search was completed to locate any additional literature outside the original search.

      Sample

      A total of 2472 citations were identified. After screening titles and abstracts, 37 full-text articles were retrieved and assessed for eligibility. Two independent reviewers completed the screening process. A hand search located one additional article. A final sample of 18 articles were included in the review.

      Results

      The parent education programs described in the final sample included standardized discharge education programs, simulation training, resourcefulness training, patient-specific action plans, disaster preparedness, and symptom and technology management.

      Conclusion

      Although most parent education programs identified in this review focused on teaching caregiver skills, program characteristics and outcome measures varied widely.

      Implications

      This review recommends directions for future research to optimize parent education for children assisted by IMV.

      Keywords

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      References

        • Amar-Dolan L.G.
        • Horn M.H.
        • O’Connell B.
        • Parsons S.K.
        • Roussin C.J.
        • Weinstock P.H.
        • Graham R.J.
        “This is how hard it is”. Family experience of hospital-to-home transition with a tracheostomy.
        Annals of the American Thoracic Society. 2020; 17: 860-868
        • Baker C.D.
        • Martin S.
        • Thrasher J.
        • Moore H.M.
        • Baker J.
        • Abman S.H.
        • Gien J.
        A standardized discharge process decreases length of stay for ventilator-dependent children.
        Pediatrics. 2016; 137: 04
        • Boebel Toly V.
        • Blanchette J.E.
        • Musil C.M.
        • Zauszniewski J.A.
        Journaling as reinforcement for the resourcefulness training intervention in mothers of technology-dependent children.
        Applied Nursing Research. 2016; 32: 269-274
        • Boroughs D.S.
        An evaluation of a continuing education program for family caregivers of ventilator-dependent children with spinal muscular atrophy (SMA).
        Children. 2017; 4: 29
        • Breitenstein S.M.
        • Gross D.
        • Christophersen R.
        Digital delivery methods of parenting training interventions: A systematic review.
        Worldviews on Evidence-Based Nursing. 2014; 11: 168-176
        • Callans K.M.
        • Bleiler C.
        • Flanagan J.
        • Carroll D.L.
        The transitional experience of family caring for their child with a tracheostomy.
        Journal of Pediatric Nursing. 2016; 31: 397-403
        • Coller R.J.
        • Klitzner T.S.
        • Lerner C.F.
        • Nelson B.B.
        • Thompson L.R.
        • Qianqian Z.
        • Chung P.J.
        Complex care hospital use and postdischarge coaching: A randomized controlled trial.
        Pediatrics. 2018; 142: 1-9
        • Com G.
        • Kuo D.Z.
        • Bauer M.L.
        • Lenker C.V.
        • Melguizo-Castro M.M.
        • Nick T.G.
        • Makris C.M.
        Outcomes of children treated with tracheostomy and positive-pressure ventilation at home.
        Clinical Pediatrics. 2013; 52: 54-61
        • DeMauro S.B.
        • D’Agostino J.A.
        • Bann C.
        • Bernbaum J.
        • Gerdes M.
        • Bell E.F.
        • Kirpalani H.
        Developmental outcomes of very preterm infants with tracheostomies.
        The Journal of Pediatrics. 2014; 164 (e1302): 1303-1310
        • Edwards J.D.
        • Panitch H.B.
        • George M.
        • Cirrilla A.M.
        • Grunstein E.
        • Wolfe J.
        • Miller R.L.
        Development and validation of a novel informational booklet for pediatric long-term ventilation decision support.
        Pediatric Pulmonology. 2020; 11: 11
        • Gaudreau P.A.
        • Greenlick H.
        • Dong T.
        • Levy M.
        • Hackett A.
        • Preciado D.
        • Reilly B.K.
        Preventing complications of pediatric tracheostomy through standardized wound care and parent education.
        JAMA Otolaryngology. Head & Neck Surgery. 2016; 142: 966-971
        • Gillen J.K.
        • Morris M.C.
        Preparing families of technology-dependent children for emergencies.
        Hospital Pediatrics. 2019; 9: 874-879
        • Gowans M.
        • Keenan H.T.
        • Bratton S.L.
        The population prevalence of children receiving invasive home ventilation in Utah.
        Pediatric Pulmonology. 2007; 42: 231-236
        • Henderson C.M.
        • Raisanen J.C.
        • Shipman K.J.
        • Jabre N.A.
        • Wilfond B.S.
        • Boss R.D.
        Life with pediatric home ventilation: Expectations versus experience.
        Pediatric Pulmonology. 2021; 56: 3366-3373
        • Kirk S.
        • Glendinning C.
        • Callery P.
        Parent or nurse? The experience of being the parent of a technology-dependent child.
        Journal of Advanced Nursing. 2005; 51: 456-464
        • Kohn J.
        • McKeon M.
        • Munhall D.
        • Blanchette S.
        • Wells S.
        • Watters K.
        Standardization of pediatric tracheostomy care with “go-bags”.
        International Journal of Pediatric Otorhinolaryngology. 2019; 121: 154-156
        • Mai K.
        • Davis R.K.
        • Hamilton S.
        • Robertson-James C.
        • Calaman S.
        • Turchi R.M.
        Identifying caregiver needs for children with a tracheostomy living at home.
        Clinical Pediatrics (Phila). 2020; 59: 1169-1181
        • Maynard R.
        • Christensen E.
        • Cady R.
        • Jacob A.
        • Ouellette Y.
        • Podgorski H.
        • Wheeler W.
        Home health care availability and discharge delays in children with medical complexity.
        Pediatrics. 2019; 143e20181951
        • McCasland M.
        • Brooks R.L.
        Multidisciplinary team approach improves patient outcomes in tracheostomy patients: A clinical initiative.
        ORL-Head and Neck Nursing. 2019; 37 (Retrieved from): 6-10
        • Muesing C.
        • Schimelpfenig B.
        • Hustvet D.
        • Maynard R.
        • Christensen E.W.
        Longitudinal prevalence of Tracheostomized children in Minnesota.
        Hospital Pediatrics. 2020; 10: 663-669
        • Nelson B.B.
        • Coller R.J.
        • Saenz A.A.
        • Chung P.J.
        • Kaplan A.
        • Lerner C.F.
        • Klitzner T.S.
        How avoidable are hospitalizations for children with medical complexity? Understanding parent perspectives.
        Academic Pediatrics. 2016; 16: 579-586
        • Page M.J.
        • McKenzie J.E.
        • Bossuyt P.M.
        • Boutron I.
        • Hoffmann T.C.
        • Mulrow C.D.
        • Moher D.
        The PRISMA 2020 statement: An updated guideline for reporting systematic reviews.
        BMJ. 2021; 372n71
        • Peters M.
        • Godfrey C.
        • Khalil H.
        • McInerney P.
        • Parker D.
        • Soares C.
        Guidance for conducting systematic scoping reviews.
        International Journal of Evidence-Based Healthcare. 2015; 13
        • Peters MDJ G.C.
        • McInerney P.
        • Munn Z.
        • Tricco A.C.
        • Khalil H.
        Chapter 11: Scoping reviews (2020 version).
        in: Z A.E.M. JBI Manual for evidence synthesis: JBI. 2020
        • Prickett K.
        • Deshpande A.
        • Paschal H.
        • Simon D.
        • Hebbar K.B.
        Simulation-based education to improve emergency management skills in caregivers of tracheostomy patients.
        International Journal of Pediatric Otorhinolaryngology. 2019; 120: 157-161
        • Raines D.A.
        • Robinson J.
        Format of parent education material preferred by new mothers.
        Clinical Nursing Research. 2020; 29: 256-259
        • Sobotka S.A.
        • Foster C.
        • Lynch E.
        • Hird-McCorry L.
        • Goodman D.M.
        Attributable delay of discharge for children with long-term mechanical ventilation.
        The Journal of Pediatrics. 2019; 212: 166-171
        • Sobotka S.A.
        • Gaur D.S.
        • Goodman D.M.
        • Agrawal R.K.
        • Berry J.G.
        • Graham R.J.
        Pediatric patients with home mechanical ventilation: The health services landscape.
        Pediatric Pulmonology. 2019; 54: 40-46
        • Sobotka S.A.
        • Lynch E.
        • Peek M.E.
        • Graham R.J.
        Readmission drivers for children with medical complexity: Home nursing shortages cause health crises.
        Pediatric Pulmonology. 2020; 55: 1474-1480
        • Spratling R.
        • Faulkner M.S.
        • Chambers R.
        • Lawrence P.
        • Feinberg I.
        • Hayat M.J.
        Establishing fidelity for the creating opportunities for personal empowerment: Symptom and technology management resources (COPE-STAR) intervention.
        Journal of Advanced Nursing. 2020; 76: 3440-3447
        • Sterni L.M.
        • Collaco J.M.
        • Baker C.D.
        • Carroll J.L.
        • Sharma G.D.
        • Brozek J.L.
        • Halbower A.C.
        An official American Thoracic Society clinical practice guideline: Pediatric chronic home invasive ventilation.
        American Journal of Respiratory and Critical Care Medicine. 2016; 193: e16-e35
        • Szondy M.V.
        • Morton D.E.
        • Parrott H.M.
        • Bazzy-Asaad A.
        • Tolomeo C.
        Standardizing family education in a pediatric respiratory care unit.
        Journal of Pediatric Nursing. 2014; 29: 272-278
        • Thrasher J.
        • Baker J.
        • Ventre K.M.
        • Martin S.E.
        • Dawson J.
        • Cox R.
        • Baker C.D.
        Hospital to home: A quality improvement initiative to implement high-fidelity simulation training for caregivers of children requiring long-term mechanical ventilation.
        Journal of Pediatric Nursing. 2018; 38: 114-121
        • Tofil N.M.
        • Rutledge C.
        • Zinkan J.L.
        • Youngblood A.Q.
        • Stone J.
        • Peterson D.T.
        • White M.L.
        Ventilator caregiver education through the use of high-fidelity pediatric simulators: A pilot study.
        Clinical Pediatrics. 2013; 52: 1038-1043
        • Tolomeo C.
        • Major N.E.
        • Szondy M.V.
        • Bazzy-Asaad A.
        Standardizing care and parental training to improve training duration, referral frequency, and length of stay: Our quality improvement project experience.
        Journal of Pediatric Nursing. 2017; 32: 72-79
        • Toly V.B.
        • Musil C.M.
        • Zauszniewski J.A.
        Resourcefulness training intervention: A promising approach to improve mental health of mothers with technology-dependent children.
        Applied Nursing Research. 2014; 27: 87-90
        • Tricco A.C.
        • Lillie E.
        • Zarin W.
        • O’Brien K.K.
        • Colquhoun H.
        • Levac D.
        • Straus S.E.
        PRISMA extension for scoping reviews (PRISMA-ScR): Checklist and explanation.
        Annals of Internal Medicine. 2018; 169: 467-473
        • Van Orne J.
        • Branson K.
        • Cazzell M.
        Boot camp for caregivers of children with medically complex conditions.
        AACN Advanced Critical Care. 2018; 29: 382-392
        • Whalen M.
        The feasibility and use of simulation to assess parent learning.
        Clinical Simulation in Nursing. 2020; 38: 23-26
        • Woodgate R.L.
        • Edwards M.
        • Ripat J.D.
        • Borton B.
        • Rempel G.
        Intense parenting: A qualitative study detailing the experiences of parenting children with complex care needs.
        BMC Pediatrics. 2015; 15: 197
        • Yuen A.
        • Rodriguez N.
        • Osorio S.N.
        • Nataraj C.
        • Ward M.J.
        • Clapper T.C.
        • Ching K.
        Simulation-based discharge education program for caregivers of children with tracheostomies.
        Hospital Pediatrics. 2021; 11: 571-578