1 / 22

Background

What a Challenge? Management of Technology by Parents of Children with Complex Needs in the Home Presenter: Ms. Carmel Doyle carmel.doyle@tcd.ie. Background.

huy
Download Presentation

Background

An Image/Link below is provided (as is) to download presentation Download Policy: Content on the Website is provided to you AS IS for your information and personal use and may not be sold / licensed / shared on other websites without getting consent from its author. Content is provided to you AS IS for your information and personal use only. Download presentation by click this link. While downloading, if for some reason you are not able to download a presentation, the publisher may have deleted the file from their server. During download, if you can't get a presentation, the file might be deleted by the publisher.

E N D

Presentation Transcript

  1. What a Challenge? Management of Technology by Parents of Children with Complex Needs in the HomePresenter: Ms. Carmel Doylecarmel.doyle@tcd.ie 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  2. Background • 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). 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  3. Influential Reports • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  4. Aim of the Project • The aim of this project was to identify the types of technology used by children with complex needs who are receiving care at home. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  5. 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. 5 11th Annual Interdisciplinary Research Conference 2010

  6. 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 6 11th Annual Interdisciplinary Research Conference 2010

  7. 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 Phase 2: Recruitment 7 11th Annual Interdisciplinary Research Conference 2010

  8. 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 8 11th Annual Interdisciplinary Research Conference 2010

  9. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  10. Phase 2: Data analysis • SPSS Version 17 • Descriptive statistics to determine frequencies • Qualitative data analysed using thematic analysis 11th Annual Interdisciplinary Research Conference 2010

  11. Theme 1 – The Procurement Process • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  12. Theme 2-Managing Equipment • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  13. Theme 3- Impact on the Home • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  14. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  15. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  16. Theme 4- Medication Management • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  17. Implications • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  18. Implications • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  19. Implications • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  20. Conclusions • 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  21. Acknowlegements • The Jack and Jill Foundation • This study was funded by the Irish Hospice Foundation. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

  22. References • 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 FondazioneMaruzza 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. 13th Annual Interdisciplinary Research Conference, School of Nursing & Midwifery, Trinity College

More Related