13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
What a Challenge? Management of Technology by Parents of
Children with Complex Needs in the Home
Presenter: Ms. Carmel [email protected]
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Increasing emphasis on providing children’s palliative care services and sustaining their excellence and quality (European Association of Palliative Care 2009, DoH&C 2010).
Children’s palliative care includes providing care for children with complex and life limiting illnesses in which technical care giving forms a core part of the caring role Nicholl 2008).
Approximately, 1400 children live with a life limiting illness in the Republic of Ireland (DoHC 2009).
Background
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Department of Health and Children and The Irish Hospice Foundation (2005) Palliative Care Needs Assessment for Children.
Department of Health and Children (2009) Palliative Care for Children with Life-limiting Conditions in Ireland. A National Policy. Dublin: Department of Health and Children.
Influential Reports
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
The aim of this project was to identify the types of technology used by children with complex needs who are receiving care at home.
Aim of the Project
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Objectives
• To identify: • the types of technology that are in use at the
homes of children with complex needs.
• the level of dependency on this technology.
• the challenges encountered by parents in using this technology.
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Methodology
Two phase mixed method research study Ethical approval Recruitment in 2 stages Phase 1
◦Focus group - expert nurses (n=9)◦Three activities focused on technology used
within the home◦Thematic data analysis to inform Phase 2:
questionnaire development
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Phase 2: Recruitment Purposeful sampling Project advertised on
website, newsletter and personal contact with all parents in receipt of services provided by The Jack and Jill Children’s Foundation
Potential participants sent an information pack
Response: 180 respondents consented to partake in study and 178 were contacted
Data collected by personal contact and phone
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Phase 2 – Data Collection
◦Questionnaire
◦8 sections Demographic data 93 forced choice response (Y;N;/N/A) 1 open question 1 closed question for data collector
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Section
Title
1 Demographic data
2 Equipment related to sleeping
3 Equipment related to hearing/vision/communication
4 Equipment related to mobilising
5 Equipment related to elimination
6 Equipment related to eating and drinking
7 Equipment related to breathing
8 Equipment related to additional equipment
11th Annual Interdisciplinary Research Conference 2010
Phase 2: Data analysis
SPSS Version 17 ◦Descriptive statistics to determine frequencies
Qualitative data analysed using thematic analysis
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Difficulties obtaining equipment and waiting times involved in acquiring essential devices.
“constant battle” (parent a). Long waiting times emphasised between
ordering and delivery of equipment. Waiting times of up to 3 years were recorded. Other times equipment arrived and company
representatives were delayed in demonstrating its use.
Some parents dealt directly with suppliers proving inconvenient and time consuming.
Theme 1 – The Procurement Process
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Often complex tasks taken on. Worried about correct use of some
equipment and the constant need to adjust it to ensure child was comfortable.
Operability of some equipment a constant source of worry.
Servicing of equipment. Need for back up devices/supplies. Exacerbated by lack of appropriate
instruction, training or support.
Theme 2-Managing Equipment
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Physical impact. Parents required equipment storage to be as
unobtrusive as possible. Often renovation or home extensions were
necessitated to achieve adequate storage space and maneuverability.
Equipment noise levels. Mobility of larger devices. Necessity for portable devices. Transportation issues. Restricted visiting due to safety risks posed by
certain devices.
Theme 3- Impact on the Home
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
80% of children were taking medications.
Timing of administration.
Parents highlighted the equipment and technology in the administration process.
Time consuming process if on multiple medications.
Theme 4- Medication Management
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Child and family◦The difficulty of living in a technological
and very clinical environment.◦Physical impact. ◦Emotional and psychological impact of
caring in the home. ◦Constant observation on the child using
cameras.◦Normal family life.
Implications
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Service Providers◦ Collaborative
approach to discharge planning required between community services and hospital.
◦ Parental training needs focused programmes.
Practitioners ◦ Specific, focused
discharge planning implemented before discharge home.
◦ Participate in ongoing parental training and support.
Implications
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Education Providers◦Enhance professionals understanding of the implications of providing care for children with life limiting illnesses at home.
◦Examine the role of interdisciplinary community care programmes for health professionals.
Implications
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
This study for the first time in Ireland quantified the range and nature of technology use by parents when caring for their child with life limiting illness in the home.
Care activities undertaken by parents were identified and the practical impact on the family was considered.
In conclusion, this study identifies the need for appropriate supportive mechanisms to be put in place for the parents and child with life limiting illness at home.
Conclusions
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
The Jack and Jill Foundation
This study was funded by the Irish Hospice Foundation.
Acknowlegements
13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College
Department of Health and Children (2010) Palliative care for children with life limiting conditions in Ireland - A National Policy. The Stationery Office, Dublin.
European Association of Palliative Care (EAPC) (2009) Palliative care for Infants, Children and Young People. The Facts. EAPC Taskforce for Palliative care for children supported by Fondazione Maruzza Lefebvre D’Ovido Onus, Italy.
Nicholl H. (2008) An exploration of mothers’ experiences in caring for children with complex needs. Unpublished PhD thesis University of Dublin, Trinity College.
References