Literature DB >> 32949218

Home nursing for children with home mechanical ventilation in the United States: Key informant perspectives.

Sarah A Sobotka1, Ayesha Dholakia2, Jay G Berry3, Maria Brenner4, Robert J Graham5, Denise M Goodman6, Rishi K Agrawal7.   

Abstract

OBJECTIVES & HYPOTHESIS: Children with home mechanical ventilation (HMV) require skilled care by trained caregivers, and their families feel the impacts of ubiquitous home nursing shortages. It is unknown which factors determine allocation; no standards for private duty nursing intensity exist. We sought to characterize provider experiences with and opinions on home nursing for children with HMV, hypothesizing providers would describe frequent home nursing gaps across clinical scenarios.
METHODS: Purposeful and snowball sampling identified key informant clinical providers. Survey topics included hours of home nursing received across clinical and family scenarios. Close-ended responses were analyzed using descriptive statistics and open-ended questions coded with iterative modification for major theme agreement.
RESULTS: A total of 59 respondents represented care of patients from 44 states; 49.2% physicians, 37.3% nurses, 10.2% respiratory therapists, and 3.4% case managers. Nearly all (97%) believed that families should receive more hours during initial home transition, yet less than half (47%) do. The majority (80.7%) thought the presence of other children in the home should influence nursing hours, yet only three (5.3%) reported other children have influence. Across hypothetical medical technology scenarios, providers consistently described children receiving fewer nursing hours than the providers' ideal practice. A third (31.7%) described discharging patients without any home nursing arranged.
CONCLUSIONS: This HMV provider sample highlights pervasive deficiency in home nursing provision with heterogenous interpretation of what constitutes ideal home care. Family and social contextual factors are infrequently considered in nursing allocations. Provider, community health, and family stakeholders must collaborate to generate national community practice standards for children with HMV.
© 2020 Wiley Periodicals LLC.

Entities:  

Keywords:  children with medical complexity; epidemiology; home nursing; mechanical ventilation; social dimensions of pulmonary medicine

Mesh:

Year:  2020        PMID: 32949218      PMCID: PMC8055039          DOI: 10.1002/ppul.25078

Source DB:  PubMed          Journal:  Pediatr Pulmonol        ISSN: 1099-0496


  31 in total

1.  Attributable Delay of Discharge for Children with Long-Term Mechanical Ventilation.

Authors:  Sarah A Sobotka; Carolyn Foster; Emma Lynch; Lindsey Hird-McCorry; Denise M Goodman
Journal:  J Pediatr       Date:  2019-05-29       Impact factor: 4.406

2.  Home Health Care For Children With Medical Complexity: Workforce Gaps, Policy, And Future Directions.

Authors:  Carolyn C Foster; Rishi K Agrawal; Matthew M Davis
Journal:  Health Aff (Millwood)       Date:  2019-06       Impact factor: 6.301

3.  Informal caregiver burden among survivors of prolonged mechanical ventilation.

Authors:  David C Van Pelt; Eric B Milbrandt; Li Qin; Lisa A Weissfeld; Armando J Rotondi; Richard Schulz; Lakshmipathi Chelluri; Derek C Angus; Michael R Pinsky
Journal:  Am J Respir Crit Care Med       Date:  2006-10-26       Impact factor: 21.405

4.  Financing of Pediatric Home Health Care.

Authors:  Edwin Simpser; Mark L Hudak
Journal:  Pediatrics       Date:  2017-03       Impact factor: 7.124

5.  Absolute involvement: the experience of mothers of ventilator-dependent children.

Authors:  Sharon Wilson; Janice M. Morse; Janice Penrod
Journal:  Health Soc Care Community       Date:  1998-07

Review 6.  Families' experiences of caring at home for a technology-dependent child: a review of the literature.

Authors:  S Kirk
Journal:  Child Care Health Dev       Date:  1998-03       Impact factor: 2.508

7.  Impact, meaning and need for help and support: The experience of parents caring for children with disabilities, life-limiting/life-threatening illness or technology dependence.

Authors:  Mark Whiting
Journal:  J Child Health Care       Date:  2012-12-05       Impact factor: 1.979

8.  Ventilator-dependent children and the health services system. Unmet needs and coordination of care.

Authors:  Jennifer L Hefner; Wan Chong Tsai
Journal:  Ann Am Thorac Soc       Date:  2013-10

9.  Care of technology-dependent children in the home.

Authors:  Deborah Boroughs; Joan A Dougherty
Journal:  Home Healthc Nurse       Date:  2009-01

10.  Examining pediatric emergency home ventilation practices in home health nurses: Opportunities for improved care.

Authors:  Sheila S Kun; Virginia N Beas; Thomas G Keens; Sally S L Ward; Jeffrey I Gold
Journal:  Pediatr Pulmonol       Date:  2014-04-07
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  2 in total

1.  Allocation of Pediatric Home Care Nursing Hours: The Minnesota Experience.

Authors:  Lindsey Paitich; Chris Luedemann; Judy Giel; Roy Maynard
Journal:  Home Healthc Now       Date:  2022 Jan-Feb 01

2.  Increasing the Focus on Children's Complex and Integrated Care Needs: A Position Paper of the European Academy of Pediatrics.

Authors:  Maria Brenner; Josephine Greene; Carmel Doyle; Berthold Koletzko; Stefano Del Torso; Ivan Bambir; Ann De Guchtenaere; Theofilos Polychronakis; Laura Reali; Adamos A Hadjipanayis
Journal:  Front Pediatr       Date:  2021-12-01       Impact factor: 3.418

  2 in total

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