There are few studies that focus on children's subjective responses to home
ventilation and how this in turn affects their daily lives. This multiple case study
explored the experience of home ventilation from the children's
perspective. Data were collected from five children through observation and
audiotaped interviews. Children expressed their physical and emotional relationship
with the ventilator, stating: ‘It's okay. It helps me to
breathe’–a theme that had a number of distinct dimensions. Other
themes included the medicalization of childhood, being a child and hopes for the
future. Unlike other study findings to date, the children in this study concluded
that the technology was only one small part of their lives. Nurses must ensure that
these children have an opportunity to communicate their perspectives, in order to
provide care that is clinically effective and childcentered.
Aday, L.A.
,
Aitken, M.J.
and
Wegener, D.H.
(1988) Pediatric Home Care: Results of a National Evaluation
of Programs for Ventilator-assisted Children.
Chicago, IL: Pluribus Press
.
2.
Admi, H.
(1996)
‘Growing Up with a Chronic Health Condition: a Model of an
Ordinary Lifestyle’
, Qualitative Health Research6(2):
163–183
.
3.
Alexander, E.
,
Rennick, J.E.
,
Carnevale, F.
and
Davis, M.
(2002)
‘Daily Struggles: Living with Long-term Childhood Technology Dependence’
, Canadian Journal of Nursing Research34(4):
7–14
.
4.
Beresford, B.
(1995) Expert Opinions: a National Survey of Caring for a
Severely Disabled Child.
Bristol: Policy Press
.
5.
Bergen, A.
and
While, A.
(2000)
XEN=‘A Case for Case Studies: Exploring the Use of Case Study
Design in Community Nursing Research’
, Journal of Advanced Nursing31(4):
926–934
.
6.
Dalton, R.
and
Kirkhart, K.
(1986)
‘An Evolution of Emotional Problems Faced by Ventilator-assisted Children’
, The Psychiatric Forum4:
73–81
.
7.
Erickson, E.
(1963) Childhood and Society(2nd edn).
New York: W.W. Norton & Company
.
8.
Fauroux, B.
,
Sardet, A.
and
Foret, D.
(1995)
‘Home Treatment for Chronic Respiratory Failure in Children: a
Prospective Study’
, European Respiratory Journal8(12):
2062–2066
.
9.
Gilgoff, R.L.
and
Gilgoff, I.S.
(2003)
Long-term Follow-up of Home Mechanical Ventilation in Young Children with
Spinal Cord Injury and Neuromuscular Conditions'
, Journal of Pediatrics142(5):
476–480
.
10.
Gilgoff, I.S.
,
Kahlstrom, E.
,
Maclaughlin, E.
and
Keens, T.G.
(1989)
‘Long-term Ventilatory Support in Spinal Muscular Atrophy’
, Journal of Pediatrics115(6):
904–909
.
11.
Hamlett, K.W.
,
Walker, W.
,
Evans, A.
and
Weise, K.
(1994)
‘Psychological Development of Technology-dependent Children’Journal of Pediatric Psychology19(4):
493–503
.
12.
Hazlett, D.E.
(1989)
‘A Study of Pediatric Home Ventilator Management: Medical,
Psychosocial, and Financial Aspects’
, Journal of Pediatric Nursing4(4):
284–294
.
13.
Horne, S.xs
(1999)
‘Phenomenology: Understanding the Life Experience of Long-term
Ventilated Adolescents’
, Pediatric Nursing11(6):
37–39
.
14.
Kirk, S.
(1998)
‘Families’ Experiences of Caring at Home for a
Technology-dependent Child: a Review of the Literature’
, Child: Care, Health and Development24(2):
101–114
.
15.
Litwin, P.D.
,
Flegel, C.M.
and
Richardson, B.G.
(1992)
‘An Overview of Home Mechanical Ventilation in Canada’
, Canadian Journal of Respiratory Therapy28(2):
67–73
.
16.
Lumeng, J.C.
,
Warschausky, S.A.
,
Nelson, V.S.
and
Augenstein, K.
(2001)
‘The Quality of Life of Ventilator-assisted Children’
, Pediatric Rehabilitation4(1):
21–27
.
17.
McDonnell, A.
,
Jones, M.L.
and
Read, S.
(2000)
‘Practical Considerations in Case Study Research: the
Relationship Between Methodology and Process’
, Journal of Advanced Nursing32(2):
383–390
.
18.
Marcus, C.L.
,
Jansen, M.T.
,
Poulsen, M.K.
,
Keens, S.E.
,
Nield, T.A.
,
Lipsker, L.E.
and
Keens, T.G.
(1991)
‘Medical and Psychosocial Outcome of Children with Congenital
Central Hypoventilation Syndrome’
, Journal of Pediatrics119(6):
888–895
.
19.
Nelson, V.S.
,
Carroll, J.C.
,
Hurvitz, E.A.
and
Dean, J.M.
(1996)
‘Home Mechanical Ventilation of Children’
, Developmental Medicine and Child Neurology38(8):
704–715
.
20.
Noyes, J.
(2000)
‘Enabling Young “Ventilator-dependent” People
to Express Their Views and Experiences of Their Care in Hospital’
, Journal of Advanced Nursing31(5):
1206–1215
.
21.
Noyes, J.
,
Hartmann, H.
,
Samuels, M.
and
Southall, D.
(1999)
‘The Experiences and Views of Parents Who Care for
Ventilator-dependent Children’
, Journal of Clinical Nursing8(4):
440–450
.
22.
O’Brien, M.E.
(2001)
‘Living in a House of Cards: Family Experiences with Long-term
Childhood Technology Dependence’
, Journal of Pediatric Nursing16(1):
13–22
.
23.
Oren, J.
,
Kelly, D.H.
and
Shannon, D.C.
(1987)
‘Long-term Follow-up of Children with Congenital Central
Hypoventilation Syndrome’
, Pediatrics80(3):
375–380
.
24.
Patterson, J.M.
and
Gerber, G.
(1991)
‘Preventing Mental Health Problems in Children with Chronic
Illness or Disability’
, Children's Health Care20(3):
150–161
.
25.
Rehm, R.S.
and
Rohr, J.A.
(2002)
‘Parents’, Nurses’ and Educators’
Perceptions of Risks and Benefits of School Attendance by Children Who Are
Medically Fragile/Technology Dependent’
, Journal of Pediatric Nursing17(5):
345–353
.
26.
Scharer, K.
and
Dixon, D.M.
(1989)
‘Managing Chronic Illness: Parents with a Ventilator-dependent Child’
, Journal of Pediatric Nursing4(4):
236–247
.
27.
Strauss, A.
and
Corbin, J.
(1998) Basics of Qualitative Research.
Thousand Oaks, CA: Sage
.
28.
Wang, K.K.
and
Barnard, A.
(2004)
Technology-dependent Children and Their Families: a Review'
, Journal of Advanced Nursing45(1):
36–46
.
29.
Yin, R.K.
(1994) 'Case Study Research: Design and
Methods(2nd edn).
Thousand Oaks, CA: Sage
.
