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

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]

mailto:[email protected]


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


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


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

11th Annual Interdisciplinary Research Conference 2010

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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


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


Phase 2: Data analysis

SPSS Version 17 ◦Descriptive statistics to determine frequencies

Qualitative data analysed using thematic analysis


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


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


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


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


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


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


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


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


The Jack and Jill Foundation

This study was funded by the Irish Hospice Foundation.

Acknowlegements

https://www.jackandjill.ie/


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

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

Documents

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