Table 3.

Sample quotes describing caregivers’ recommended strategies to reduce physical and emotional stress

	Theme	Advice to other families
Child Related	Pain management regimen	‘She was in a lot of pain which was tough so I guess better pain management would have made it easier. ‘Make sure there is good pain management straight away because we weren’t given any help on what to do’
	Change of scenery	‘Wheeling her out with you into the garden to have a change of scenery. That will clear your head’
	The right equipment	‘Definitely the couch that is on wheels. It was comfortable for her and it supported her knee well, that was amazing help’ ‘Keep them the most comfortable as possible. Use pillows underneath the plaster whilst in bed to make it comfortable’
	Reestablishment of routine	‘When she was in less pain it was easier to take her out. We could even take her to restaurants in her splints so we still tried to have some normality to life’ ‘She gets terribly bored. I knew she had to go back to kinder in that 6 weeks and I think it benefited her keeping interactive’ ‘I think it’s getting back to the normal environment they are used to living in’
	Rehabilitation	‘Gentle range of motion of her upper body because she confined to the bed the whole time’ ‘If you can keep her busy and distracted so she has something to do while standing she will last longer’ ‘Having support from physio and carer support will help the child to recover quicker rather than having them in hospital’
Parent Related	Breaks from caring	‘World of good when you get out the house. Also just being kind to yourself and having little breaks and getting much sleep as you can. Quite often when she went to sleep during the day I would sleep. Not much around the place got done’ ‘A good routine of carers and have back-up friends and family who are pretty good’ ‘It doesn’t have to be a great length of time or an expensive activity. It could be a swim or a walk. Life doesn’t have to evolve around the girls. Well it does but you do need to do activities for yourself.’
	Social network	‘Kinder is amazing because we get to speak to other parents there as well’ ‘Rett mums worldwide have a page called My Daughter has Rett syndrome’
	Support from partner	‘I couldn’t manage without Pop though. Even now he is very good he helps me a lot with her’ ‘My husband and I are good at taking turns to relieve the burden on one person’ ‘Make sure you have plenty of support around you that is the biggest issue. It is a big task’
	Helpful organisations	‘The one thing that did help me though was the fact I was able to talk to (organisation) that gave me a lot of confidence’