The impact of switching on family caregivers of children with cerebral palsy

Abstract

Purpose: This study aimed to enhance our knowledge and understanding of switching, as assistive technology, and how it impacts on family caregivers of children with cerebral palsy with GMFCS levels four or five. Methods: A qualitative method using a constructivist approach was adopted. Purposive sampling was used to recruit five caregivers to participants in this study. Framework analysis was applied to the data collection of semistructured interviews conducted with each caregiver. Findings: The three main themes identified were an investment in the future, resulting in joy and hope. The learning process of switching is resource intensive, time consuming and effortful for caregivers. If caregivers do not perceive this as an investment, then they may not experience the joy switching can bring to their child, and in turn the joy, hope, and caregiver satisfaction it can offer for the future. Conclusion: This research indicates that caregivers often have the greatest impact on whether switching will be adopted in the home. The greatest impact on caregivers is related to their perception on the competence of therapists and coordination of services provided.

Implications for Rehabilitation

• Switching has the potential to increase caregiver satisfaction, decrease burden and provide hope for the future.

• Therapists need to guide family caregivers through the time consuming and resource intensive learning phase of switching.

• The greatest impact of assistive technology on caregivers is related to the competence of therapists and coordination of services provided.

Keywords::

• Caregiver
• cerebral palsy
• quality of life
• switching

Acknowledgments

The researches would like to extend sincere thanks to all the participants and organizations involved in making this research possible.

Declaration of interest: The authors declare no conflicts of interest.

Appendix A: Interview Guide

1.	Can you tell me what your child is using their switch for at the moment?
	Probes:
	Home, school, community
2.	How often is your child using the switch? At home, in the community
	Probes:
	How many times per week/day
	For how long each time
3.	Is your child able to do things now that they could not do before the switching
4.	Has the switch changed your child’s participation in the home
	Probes:
	If not using at home, why not?
	Playing, toys, using computers, turning pages of electronic book, mobility in powered wheelchair, communication devices
5.	Has the switch changed your child’s independence in the home?
	Probes:
	Are they using it in the community? Why/why not?
6.	Has your child’s mood or disposition changed using the switch?
	Probes:
	While using the switch
	Carry over to other times (less bored, more relaxed, happier)
	How does this affect the family dynamic?
	How does this affect you as the caregiver?
7.	Has the switch changed the effort required by you as a caregiver?
	Probes:
	Setting up the switch: How long? What is required?
	Increase/decrease time for self
	Physical effort
8.	Do you think it’s worth the effort?
	Probes:
	If yes, why?
	If no, is there anything that could make it better/easier?
9.	Where do you see this switch in the future?
	Probes:
	What would you like this switch to do for your child?
	How does this impact/affect you as the caregiver?
10.	Do you think this switch could make a difference in your future?
	Probes:
	How?

Service delivery:

11.	Can you explain the process you went through to get the switch
	Probes:
	Introduced to switch
	Trialling
	Practicing
12.	Did you need ongoing support or training?
	Probes:
	Did you receive enough support?
	If no, what further support did you need?
13.	What advice would you give to another family who was about to start the switching process?
14.	Is there anything further you would like to tell me about your switching experience?
	Additional probes included:
	Can you tell me more about that?
	Could you give me an example?
	How does that make you feel?