Children who live with medical conditions that were previously considered
incompatible with long term survival are often highly dependent on interventions and
equipment which would traditionally have required hospitalization. However, it is
generally accepted that their social, psychological, emotional and developmental
needs are best met at home. One of the many factors that can impede these children
from being discharged from hospital is the lack of availability of staff who can
provide care and support for them and their families. Increasing the number of staff
who are able to provide such support might, therefore, assist in providing for their
care needs. This article reports on a study of the perceived education and training
needs of staff who care for children with complex needs and their families.
Aday, L.A.
and
Wegener, D.H.
(1998)
‘Home Care for Ventilator-assisted Children: Implications for the
Children, Their Families, and Health Policy’
, Journal of Child Health Care17(2):
112-120
.
2.
Appierto, L.
,
Cori, M.
,
Binnchi, R.
,
Onofri, A.
,
Catena, S.
,
Ferrari, M.
and
Villani, A.
(2002)
‘Home Care for Chronic Respiratory Failure in Children: 15 Years Experience’
, Paediatric Anaesthesia12(4):
345-350
.
3.
Balling, K.
and
McCubbin, M.
(2001)
‘Hospitalized Children with Chronic Illness: Parental Caregiving
Needs and Valuing Parental Expertise’
, Journal of Pediatric Nursing16(2):
110-119
.
4.
Baumgardner, D.J.
and
Burtea, E.D.
(1998)
‘Quality-of-life in Technology-dependent Children Receiving Home
Care, and Their Families: A Qualitative Study’
, Western Medical Journal97(8):
51-55
.
5.
Boosfeld, B.
and
O’Toole, M.
(2000)
‘Technology Dependent Children: From Hospital to Home’
, Paediatric Nursing12(6):
20-22
.
6.
Burns, N.
and
Grove, S.K.
(1993) The Practice of Nursing Research (2nd edn).
London: W.B. Saunders
.
7.
Darbyshire, P.
(1995)
‘Family-centred Care within Contemporary British Paediatric Nursing’
, British Journal of Nursing4(1):
31-33
.
8.
Department of Health
(1997) A Bridge to the Future: Nursing Standards, Education
and Workforce Planning in Paediatric Intensive Care.
London: Department of Health
.
9.
Department of Health
(1998) Paediatric Intensive Care Framework: Future Targets
and Milestones.
London: Department of Health
.
10.
Department of Health
(2004) The National Service Framework for Children, Young
People and Maternity Services. Standard 8. Disabled Children, Young People and
those with Complex Needs.
London: Department of Health
.
11.
Dougherty, J.M.
,
Parrish, J.M.
and
Hock-Long, L.
(1995)
‘Developing a Competency-based Curriculum for Tracheostomy and
Ventilator Care’
, Paediatric Nursing21(6):
581-584
.
12.
Glendinning, C.
and
Kirk, S.
(2000)
‘High Tech Care: High Skilled Parents’
, Paediatric Nursing12(6):
25-27
.
13.
Graves, C.
and
Hayes, V.E.
(1996)
‘Do Nurses and Parents of Children with Chronic Conditions Agree
on Parental Needs?’
, Journal of Pediatric Nursing11(5):
288-299
.
14.
Hewitt-Taylor, J.
(1998)
‘Paediatric Intensive Care Nursing Education by Distance
Learning: An Example from Canada’
, Intensive and Critical Care Nursing:
14(3):
137-143
.
15.
Hewitt-Taylor, J.
(2003)
‘Facilitating Distance Learning in Nurse Education’
, Nurse Education in Practice3(1):
23-29
.
16.
Holden, C.
(2001)
‘Review of Home Paediatric Parenteral Nutrition on the UK’
, British Journal of Nursing10(12):
782-788
.
17.
Jardine, E.
,
O’Toole, M.
,
Paton, J.Y.
and
Wallis, C.
(1999)
‘Current Status of Long Term Ventilation of Children in the
United Kingdom: A Questionnaire Survey’
, British Medical Journal318(7179):
295-299
.
18.
Kirk, S.
(2001)
‘Negotiating Lay and Professional Roles in the Care of Children
with Complex Health Care Needs’
, Journal of Advanced Nursing34(5):
593-602
.
19.
Kirk, S.
and
Glendinning, C.
(2002)
‘Supporting ‘Expert’ Parents: Professional
Support and Families Caring for a Child with Complex Health Care Needs in
the Community’
, International Journal of Nursing Studies39(6):
625-635
.
20.
Le May, A.
(2001) Making Use of Research.
London: South Bank University
21.
Lumeng, J.C.
,
Nelson, V.S.
and
Hurvitz, E.A.
(1999)
‘Perinatal Spinal Cord Injury Requiring Long-term Home Mechanical
Ventilation: A Report of Four Cases’
, Paediatric Rehabilitation3(2):
53-58
.
22.
Malim, T.
and
Birch, A.
(1997) Research Methods and Statistics.
London: Macmillan
.
23.
Matheson, R.
(2003)
‘Promoting the Integration of Theory and Practice by the Use of a
Learning Contract’
, International Journal of Therapy and Rehabilitation10(6):
264-269
.
24.
Neufeld, S.M.
,
Query, B.
and
Drummond, J.E.
(2001)
‘Respite Care Users Who Have Children with Chronic Conditions:
Are They Getting a Break?’
, Journal of Pediatric Nursing16(4):
234-244
.
25.
National Health Service Executive
(1997) Evaluation of the Pilot Project Programme for Children
with Life Threatening Illness.
London: NHSE
.
26.
Noyes, J.
(2002)
‘Barriers that Delay Children and Young People who are Dependent
on Mechanical Ventilators From Being Discharged From Hospital’
, Journal of Clinical Nursing11(1):
2-11
.
27.
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
.
28.
O’Brien, M.E.
and
Wegener, C.B.
(2002)
‘Rearing the Child who is Technology Dependent: Perceptions of
Parents and Home Care Nurses’
, Journal of Specialist Pediatric Nursing7(1):
7-15
.
29.
Olsen, R.
and
Maslin-Prothero, P.
(2001)
‘Dilemmas in the Provision of Own-home Respite Support for
Parents of Young Children with Complex Health Care Needs: Evidence from an Evaluation’
, Journal of Advanced Nursing34(5):
603-610
.
30.
Prewlett, B.
(2000) Committed to Caring: The Views of Short Break Carers
for Children Who are Hard to Place.
London: YPS
.
31.
Robinson, C.
and
Jackson, P.
(1999) Children’s Hospices: A Lifeline for Families?London: National Children’s Bureau
.
32.
Robinson, C.
,
Jackson, P.
and
Townsley, R.
(2001)
‘Short Breaks for Families Caring for a Disabled Child with
Complex Health Needs’
, Child and Family Social Work6(1):
67-75
.
33.
Sasaki, M.
,
Sugai, K.
,
Fukumizu, M.
,
Hanaoka, S.
and
Kaga, M.
(2001)
‘Mechanical Ventilation Care in Severe Childhood Neurological Disorders’
, Brain and Development23(8):
796-800
.
34.
Taylor, J.
(2000)
‘Partnership in the Community and Hospital: A Comparison’
, Paediatric Nursing12(5):
28-30
.
35.
Valkinier, B.J.
,
Hayes, V.E.
and
McElheran, P.J.
(2002)
‘Mothers’ Perspectives of an In-home Nursing Respite
Service: Coping and Control’
, Canadian Journal of Nursing Research34(1):
87-109
.
36.
Watson, D.
,
Townsley, R.
and
Abbott, D.
(2002)
‘Exploring Multi-agency Working in Services to Disabled Children
with Complex Healthcare Needs and Their Families’
, Journal of Clinical Nursing11(3):
367-375
.
37.
Wellington, J.J.
(1996) Methods and Issues in Educational Research.
Sheffield: Sheffield University Division of Education
.
