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Nurses' perception of readiness to care for parents of children with special healthcare needs

Published:November 22, 2022DOI:https://doi.org/10.1016/j.pedn.2022.11.010

      Highlights

      • It is known that parents have a difficult time caring for a child with special healthcare needs in the home
      • It is reported that little time is spent preparing and evaluating parents' readiness for discharge
      • Nurses perceive parents to be underprepared on financial, psychological, and emotionaldomains.
      • Practice and policy implications related to discharge preparation may improve parent readiness to care once home

      Abstract

      Purpose

      To describe pediatric nurses' perception of readiness to care for parents of children with special healthcare needs.

      Design and Methods

      This cross-sectional, exploratory study surveyed 56 pediatric nurses from a large tertiary care center in Appalachia. Participants completed an anonymous electronic survey aimed at evaluating perception of discharge preparation and readiness to care. Data analysis included descriptive statistics and Chi square comparisons.

      Results

      The majority of participants (80%) reported spending 12 h or less preparing parents for discharge. The domains rated lowest on readiness to care included financial, psychological, and emotional. Participants anticipate parents spending an average of 13.9 h a day serving as the child's primary caregiver in the home.

      Conclusions

      Subjective, ‘unseen’ domains of readiness are often under-assessed and evaluated. Parents are often discharged with limited preparation to assume around-the-clock care for a child with special healthcare needs, specifically related to their holistic health and wellbeing.

      Practice Implications

      Standardization of discharge preparation and readiness evaluation should focus on overall parent preparedness, including financial, psychological, and emotional domains. Discharge preparation should begin at the time of admission to familiarize parents with care. Clear, frequent communication should be used to emphasize realistic expectations and assess unique needs. Provision of accessible community-based resources should be given early to better equip parents with supportive services once home.

      Keywords

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      References

      1. AARP. (2020). Caregiving in the US. https://www.aarp.org/content/dam/aarp/ppi/2020/05/full-report-caregiving-in-the-united-states.doi.10.26419-2Fppi.00103.001.pdf.

        • Aydon L.
        • Hauck Y.
        • Murdoch J.
        • Siu D.
        • Dip M.S.
        Transition from hospital to home: Parents' perception of their preparation and readiness for discharge with their preterm infant.
        Journal of Clinical Nursing. 2018; 27: 269-277
        • Berman L.
        • Raval M.V.
        • Ottosen M.
        • Mackow A.K.
        • Cho M.
        • Goldin A.B.
        Parent perspectives on readiness for discharge home after neonatal intensive care unit admission.
        The Journal of Pediatrics. 2019; 205: 98-104
        • Centers for Disease Control and Prevention
        Prevention.
        2017 (https://www.cdc.gov/pictureofamerica/pdfs/picture_of_america_prevention.pdf)
        • Courtney E.
        • Kiernan G.
        • Guerin S.
        • Ryan K.
        • McQuillan R.
        Mothers' perspectives of the experience and impact of caring for their child with a life-limiting neurodevelopmental disability.
        Child: Care, Health and Development. 2018; 44: 704-710
        • Currie G.
        • Szabo J.
        ‘It would be much easier if we were just quiet and disappeared’: Parents silenced in the experience of caring for children with rare diseases.
        Health Expectations. 2019; 22: 1251-1259
        • Foster C.C.
        • Agrawal R.K.
        • Davis M.M.
        Home health care for children with medical complexity: Workforce gaps, policy, and future directions.
        Health Affairs. 2019; 38: 987-993
        • Hariati S.
        • Febriani A.D.B.
        • Sutomo R.
        • Lusmilasari L.
        • McKenna L.
        Exploring Indonesian nurses' perspectives on preparing parents of preterm infants for hospital discharge: A qualitative study.
        Journal of Neonatal Nursing. 2021; 28: 59-66
        • MacPherson M.
        • Arango P.
        • Lauver C.
        • McManus M.
        • Newacheck P.W.
        • Perrin J.M.
        • Shonkoff J.P.
        • Strickland B.
        A new definition of children with special healthcare needs.
        Pediatrics. 1998; 102: 137-139
        • Neuman B.
        The neuman systems model: Application to nursing education and practice.
        Appleton-Century-Crofts, 1982
        • Neuman B.
        NSM PowerPoint overview.
        Newman Systems Model, Inc, 2005
        • Panicker L.
        Nurses' perceptions of parent empowerment in chronic illness.
        Contemporary Nurse. 2013; 45: 210-219
        • Peyrovi H.
        • Mosayebi Z.
        • Mohammed-Doost F.
        • Chehrzad M.M.
        • Mehran.
        The effect of empowerment program on “perceived readiness for discharge” of mothers of premature infants.
        The Journal of Maternal-Fetal & Neonatal Medicine. 2016; 29: 752-757
        • Phillips B.
        Experience of parents caring for a child with an acquired disability (11307.).
        ([Doctoral dissertation, West Virginia University]. Graduate Theses, Dissertations, and Problem Reports)
        • Phillips B.
        • Theeke L.
        • Sarosi K.
        Relationship between negative emotions and perceived support among parents of hospitalized, critically ill children.
        International Journal of Nursing Sciences. 2020; 8: 1-8
        • Poh P.F.
        • Lee J.H.
        • Loh Y.J.
        • Tan T.H.
        • Cheng K.K.F.
        Readiness for hospital discharge, stress, and coping in mothers of children undergoing cardiac surgeries: A single-center prospective study.
        Pediatric Critical Care Medicine. 2020; 21: 301-310
        • Schuh M.
        • Schendel S.
        • Islam S.
        • Klassen K.
        • Morrison L.
        • Rankin K.N.
        • Robert C.
        • Mackie A.S.
        Parent readiness for discharge from a tertiary care pediatric cardiology unit.
        Journal for Specialists in Pediatric Nursing. 2016; 21: 139-146
        • 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
        • Weiss M.E.
        • Lerret S.M.
        • Sawin K.J.
        • Schiffman R.F.
        Parent readiness for hospital discharge scale: Psychometrics and association with postdischarge outcomes.
        Journal of Pediatric Health Care. 2020; 34: 30-37
        • Weiss M.E.
        • Sawin K.J.
        • Gralton K.
        • Johnson N.
        • Klingbeil C.
        • Lerret S.
        • Malin S.
        • Yakusheva O.
        • Schiffman R.
        Discharge teaching, readiness for discharge, and post-discharge outcomes in parents of hospitalized children.
        Journal of Pediatric Nursing. 2017; 34: 58-64