DOMICILARY
OXYGEN FOR INFANTS WITH CHRONIC LUNG DISEASE-THE PARENTS/CARERS PERSPECTIVE
OF THEIR SUPPORT NEEDS
Hughes J.
University of Reading, Reading, United
Kingdom
Objective: Over recent years there have been considerable
technological advances in the field of neonatal medicine (Kotecha and
Silverman 1999). One of the consequences of the increased survival of
extremely preterm infants is that of Chronic lung disease of prematurity
(CLD). Infants presenting with CLD may require oxygen for prolonged periods
and many units throughout the United Kingdom will offer a community service
to allow these babies to be nursed in the home environment.
As a Community Childrens’ Nurse (CCN) my caseload includes infants
requiring home oxygen thus I have a vested interest in identification of
the support needs of the carers of babies with CLD.
The objectives of my research were:
To identify the support needs as perceived by the
carers
To establish the interest for a support group
Methods: Initially a literature search was carried out to
identify other studies both nationally and internationally. Having
identified the client group and sought ethical approval, I identified a
field study utilising ethnographic theory as the method of research. Data
Collection was through questionnaire and semi structured interview.
Results: From a qualitative perspective the questions were analysed and interviews
transcribed thematically. There was some statistical analysis to identify
the level of interest in a support group. 94% of the client group would
attend a support group. Further questions were then devised to identify how
the carers would like the group to be run. Whilst they identified the
support of a Health Professioanl in setting up the group they expressed a
preference for it to be carer led and to take place in the home setting.
Conclusion: The initial support group for carers of oxygen
dependant infants was set up in
1996 and has been running successfully since. It
appears that the need for support lessens as the baby is weaned from the
oxygen and at this point carers attend the group less regularly. The most
recent cohort have expressed a particular interest in national and
international email links with parents/carers of babies with CLD. Many
parents locally have set up internet sites for their baby and further
research is now required to identify the benefits of internet support
groups for these families.
REFS: Kotecha S, Silverman M. Chronic
respiratory complications of neonatal disorders. In Lansau LI, Taussing LM,
eds Texbook of pediatric respiratory medicine. Mosby. 1999