Section 13: The published experience and outcomes of family caregivers when a child is on home mechanical ventilation

References

• Carter B, Cummings J, Cooper L. An exploration of best practice in multi-agency working and the experiences of families of children with complex health needs. What works well and what needs to be done to improve practice for the future? J Clin Nurs. 2007;16(3):527–539.
   Google Scholar
• Amin R, Chaves A, Syed F, Moraes T. Technology dependent children: the chronically ventilated child. Cpr. 2012;8(2):114–130.
   Google Scholar
• Kirk S. Families' experiences of caring at home for a technology-dependent child: a review of the literature. Child Care Health Dev. 1998;24(2):101–114.
   PubMed Web of Science ®Google Scholar
• Lindahl B, Lindblad BM . Family members' experiences of everyday life when a child is dependent on a ventilator: a metasynthesis study. J Fam Nurs. 2011;17(2):241–269.
   PubMed Web of Science ®Google Scholar
• Blucker R, Elliot T, Warren R, Warren A. Psychological adjustment of family caregivers of children who have severe neurodisabilities that require chronic respiratory management. Fam Syst Health. 2011;29(3):215–231.
   PubMedGoogle Scholar
• Manhas K, Mitchell I. Extremes, uncertainties and responsibility across boundaries: facets and challenges of the experience of transition to complex, pediatric home care. J Child Health Care. 2012;16(3):224–236.
   Google Scholar
• Hefner JL, Tsai WC. Ventilator-dependent children and the health services system. Unmet needs and coordination of care. Annals Ats. 2013;10(5):482–489.
   Google Scholar
• Kuster PA, Badr LK. Mental health of mothers caring for ventilator-assisted children at home. Issues Ment Health Nurs. 2006;27(8):817–835.
   PubMedGoogle Scholar
• Meltzer L, Mindell J. Impact of a child's chronic illness on maternal sleep and daytime functioning. Arch Intern Med. 2006;166(16):1749–1755.
   Google Scholar
• Meltzer L, Boroughs D, Downes J. The relationship between home nursing coverage, sleep and daytime functioning in parents of ventilator-assisted children. J Pediatr Nurs. 2010;25(4):250–257.
   Google Scholar
• Toly VB, Musil CM, Zauszniewski JA. Resourcefulness training intervention: a promising approach to improve mental health of mothers with technology-dependent children. Appl Nurs Res. 2014;27(1):87–90.
   PubMed Web of Science ®Google Scholar
• Kuster PA, Badr LK, Chang BL, Wuerker AK, Benjamin AE. Factors influencing health promoting activities of mothers caring for ventilator-assisted children. J Pediatr Nurs. 2004;19(4):276–287.
   PubMedGoogle Scholar
• Baldwin-Myers AS, Oppenheimer EA. Quality of life and quality of care data from a 7-year pilot project for home ventilator patients. J Ambul Care Manage. 1996;19(1):46–59.
   Google Scholar
• Dybwik K, Tollali T, Nielsen E, Brinchmann B. Fighting the system": families caring for ventilator dependent children and adults with complex health care needs at home. Bmc Health Serv Res. 2011;11(1):156–163.
   Google Scholar
• Mah J, Thannhauser J, McNeil D, Dewey D. Being the lifeline: the parent experience of caring for a child with neuromuscular disease on home mechanical ventilation. Neuromuscular Disord. 2008;18(12):983–988.
   PubMed Web of Science ®Google Scholar
• Agazio J. Family transition through the termination of private duty home care nursing. J Pediatr Nurs. 1997;12(2):74–84.
   Google Scholar
• Caicedo C. Families with special needs children family health, functioning, and care burden. J Am Psychiatr Nurses Assoc. 2014;20(6):398–407.
   PubMed Web of Science ®Google Scholar
• Margolan H, Fraser J, Lenton S. Parental experience of services when their child requires long-term ventilation. Implications for commissioning and providing services. Child Care Health Dev. 2004;30(3):257–264.
   Google Scholar
• O'Brien ME, Wegner CB. Rearing the child who is technology dependent: perceptions of parents and home care nurses. J Spec Pediatr Nurs. 2002;7(1):7–15.
   Google Scholar
• Miyasaka K, Suzuki Y, Sakai H, Kondo Y. Interactive communication in high-technology home care: videophones for pediatric ventilatory care. Pediatrics. 1997;99(1):e1–e6.
   Google Scholar
• Mah J, Thannhauser J, Kolski H, Dewey D. Parental stress and quality of life in children with neuromuscular disease. Pediatr Neurol. 2008;39(2):102–107.
   Google Scholar
• Quint R, Chesterman E, Crain L, Winkleby M, Boyce T. Home care for ventilator-dependent children. Am J Dis Child. 1990;144(11):1238–1241.
   Google Scholar
• Toly V, Musil C, Carl J. A longitudinal study of families with technology-dependent children. Res Nurs Health. 2012;35(1):40–54.
   PubMed Web of Science ®Google Scholar
• Toly V, Musil C, Carl J. Families with children who are technology dependent: normalization and family functioning. West J Nurs Res. 2012;34(1):52–71.
   PubMed Web of Science ®Google Scholar
• Chatwin M, Bush A, Simonds A. Outcome of goal-directed non-invasive ventilation and mechanical insufflation/exsufflation in spinal muscular atrophy type I. Arch Dis Child. 2011;96(5):426–432.
   Google Scholar
• Kun S, Davidson-Ward S, Hulse L, Keens T. How much do primary care givers know about tracheostomy and home ventilator emergency care? Pediatr Pulmonol. 2010;45(3):270–274.
   Google Scholar
• Tofil NM, Rutledge C, Zinkan JL, et al. Ventilator caregiver education through the use of high-fidelity pediatric simulators a pilot study. Clin Pediatr (Phila). 2013;52(11):1038–1043.
   Google Scholar
• Sonneveld HM, Strating MMH, van Staa AL, Nieboer AP. Gaps in transitional care: what are the perceptions of adolescents, parents and providers?. Child Care Health Dev. 2013;39(1):69–80.
   Google Scholar
• Aday L, Wegener D, Andersen R, Aitken M. Home care for ventilator-assisted children. Health Aff (Millwood). 1989;8(2):137–147.
   Web of Science ®Google Scholar