Literature DB >> 31502488

Unmet Respite Needs of Children With Medical Technology Dependence.

Sarah A Sobotka1, Emma Lynch1, Michael T Quinn1, Saria S Awadalla2, Rishi K Agrawal3, Monica E Peek1.   

Abstract

Children with medical technology dependency (MTD) require a medical device to compensate for a vital body function and substantial nursing care. As such, they require constant high-level supervision. Respite care provides caregivers with a temporary break, and is associated with reduced stress; however, there are often barriers. The study utilizes mixed methodology with the National Survey of Children with Special Health Care Needs (NS-CSHCN) and semistructured interviews with state-wide care coordinators to understand the gap for respite care services. Fifty-nine percent of parents who needed respite care received none. Parents of older children with MTD were more likely to report respite needs. Care coordinators described that home health shortages created barriers to respite care utilization, and the lack of respite care can lead to hospital readmission. Although respite care is a vital resource to support families of children with MTD, it is infrequently available, which can have severe consequences.

Entities:  

Keywords:  caregiving; children with disabilities; children with medical complexity; home care; respite care

Mesh:

Year:  2019        PMID: 31502488      PMCID: PMC7232777          DOI: 10.1177/0009922819870251

Source DB:  PubMed          Journal:  Clin Pediatr (Phila)        ISSN: 0009-9228            Impact factor:   1.168


  36 in total

Review 1.  Long-term home mechanical ventilation in the United States.

Authors:  Angela C King
Journal:  Respir Care       Date:  2012-06       Impact factor: 2.258

Review 2.  Respite for children with complex health needs: issues from the literature.

Authors:  Claire Thurgate
Journal:  Paediatr Nurs       Date:  2005-04

3.  Financing of Pediatric Home Health Care.

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

4.  Pediatric long-term home mechanical ventilation: twenty years of follow-up from one Canadian center.

Authors:  Reshma Amin; Priya Sayal; Faiza Syed; Arlene Chaves; Theo J Moraes; Ian MacLusky
Journal:  Pediatr Pulmonol       Date:  2013-09-02

5.  Children with complex chronic conditions in inpatient hospital settings in the United States.

Authors:  Tamara D Simon; Jay Berry; Chris Feudtner; Bryan L Stone; Xiaoming Sheng; Susan L Bratton; J Michael Dean; Rajendu Srivastava
Journal:  Pediatrics       Date:  2010-09-20       Impact factor: 7.124

6.  The population prevalence of children receiving invasive home ventilation in Utah.

Authors:  Melissa Gowans; Heather T Keenan; Susan L Bratton
Journal:  Pediatr Pulmonol       Date:  2007-03

7.  Predictors of clinical outcomes and hospital resource use of children after tracheotomy.

Authors:  Jay G Berry; Dionne A Graham; Robert J Graham; Jing Zhou; Heather L Putney; Jane E O'Brien; David W Roberson; Don A Goldmann
Journal:  Pediatrics       Date:  2009-07-13       Impact factor: 7.124

8.  Chronic ventilator need in the community: a 2005 pediatric census of Massachusetts.

Authors:  Robert J Graham; Eric W Fleegler; Walter M Robinson
Journal:  Pediatrics       Date:  2007-05-07       Impact factor: 7.124

9.  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

10.  Respite care for children with special health care needs.

Authors:  Savithri Nageswaran
Journal:  Arch Pediatr Adolesc Med       Date:  2009-01
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  6 in total

1.  Intervention research to improve care and outcomes for children with medical complexity and their families.

Authors:  James A Feinstein; Jay G Berry; Chris Feudtner
Journal:  Curr Probl Pediatr Adolesc Health Care       Date:  2022-01-05

2.  The Role of Care Coordinators for Children with Respiratory Technologies and Home Nursing.

Authors:  Sarah A Sobotka; Emma Lynch; Rishi Agrawal
Journal:  Pediatr Allergy Immunol Pulmonol       Date:  2022-06       Impact factor: 0.885

3.  Employing Family Caregivers: An Innovative Health Care Model.

Authors:  Kristin Carter; Christy Blakely; Jeannie Zuk; Mark Brittan; Carolyn Foster
Journal:  Pediatrics       Date:  2022-06-01       Impact factor: 9.703

4.  "You Never Exhale Fully Because You're Not Sure What's NEXT": Parents' Experiences of Stress Caring for Children With Chronic Conditions.

Authors:  Stephanie Smith; Mary Tallon; Carrie Clark; Lauren Jones; Evalotte Mörelius
Journal:  Front Pediatr       Date:  2022-06-27       Impact factor: 3.569

5.  Readmission drivers for children with medical complexity: Home nursing shortages cause health crises.

Authors:  Sarah A Sobotka; Emma Lynch; Monica E Peek; Robert J Graham
Journal:  Pediatr Pulmonol       Date:  2020-03-25

6.  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'.

Authors:  Bethan F Page; Lisa Hinton; Emily Harrop; Charles Vincent
Journal:  Health Expect       Date:  2020-06-16       Impact factor: 3.377

  6 in total

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