Caregiver satisfaction with a multidisciplinary community-based rehabilitation programme for children with cerebral palsy in South Africa

Figures & data

Table 1: Six-week intervention sessions

Week	Educational theme	Activity	Rehabilitation outcomes
1	What is cerebral palsy?	Presentation	Identifying CP and needs for rehabilitation
2	Challenges when caring for a child with cerebral palsy	Presentation	Understanding the psychosocial demands of caregivers and role of the MDT
3	Importance of rehabilitation	Group therapy with children	Demonstrated mat-work, positioning and joint-protection techniques
4	Importance of stimulation	Toy-making with group and identification of appropriate play equipment	Demonstrated play therapy techniques and selection of appropriate toys by caregivers
5	Importance of positioning and feeding	Demonstrated correct positioning and feeding with each caregiver	Appropriate selection of foodPreparation for feedingCorrect position for feeding
6	Education on empowerment of communities	Community awareness and stigma presentation	Community-based rehabilitation project ideasEducating the community

Table 2: Caregivers’ level of satisfaction with the six-week rehabilitation intervention

Question	Poor	Neutral	Rating excellent
How would you rate your level of satisfaction with the quality of the six-week intervention	0%	15%	85%
How well did the staff deal with your needs	0%	23%	77%
What did you think of the quality of care you received	0%	15%	85%
How did you find the explanation of procedure/treatment provided	0%	8%	92%
How did you find the explanation of medical condition and treatment	0%	15%	85%
How would you rate your level of satisfaction with the referral to other healthcare professionals	0%	10%	90%
How would you rate your level of satisfaction with the explanation of discharge and follow-up care instructions	0%	46%	54%
How did you find the courtesy and concern you received from the rehabilitation healthcare worker who treated your child	0%	38%	62%
How did you feel about the rehabilitation healthcare worker’s concern about your confidentiality and privacy	0%	62%	38%
How did you feel about your involvement in treatment sessions	0%	23%	77%
What do you think about the material given about the services, content and understanding	0%	27%	73%
How would you rate the exercises	0%	23%	77%

Note: n = 26.

Table 3: Thematic representation of caregivers’ understanding of CP and their challenges to rehabilitation

Sub-theme	Quotes
Myths and beliefs about cerebral palsy
Witchcraft or curse	'Our ancestors were angry and caused the child to be sick’ (Caregiver 3)
	‘Her father took her to his family before they performed necessary rituals for her. That made the ancestors angry’ (Caregiver 8)
Mother’s stress caused cerebral palsy	‘My daughter was abused by the child’s father when she was pregnant that is why he is like this’ (Caregiver 7)
Mother’s medication as a cause of cerebral palsy	‘It is the tablets that I take when I was pregnant that caused the child to be disabled’ (Caregiver 10)
Behaviour as a cause	‘An arrogant or rude mother can cause the child to be sick’ (Caregiver 1)
	‘If we being shouted at a lot when mom was pregnant’ (Caregiver 2)
Perceptions of caregivers of children with cerebral palsy toward rehabilitation and health care
Untimely referral	‘I get help but they ordered wrong shoes for him [physiotherapy referral to orthotist] and it took a long time to do so’ (Caregiver 4)
	‘I tell them there at physio to give him a chair, they take long to get it from the other therapist [Referring to OT]’ (Caregiver 6)
Scarcity of information from healthcare staff	‘To me they said that there was blood in her brain. But did not explain how it got there or what challenges I will face with her, I only heard at physio that she had cerebral palsy (Caregiver 11)
	‘For me they said she had cerebral palsy, marked with cerebral atrophy and small head. I can see the small head but do not understand what the other stuff means’ (Caregiver 8)
Poor consultation with healthcare team	‘Depends on person attending you. Some are nice and help, others don’t explain to us. They just look at the child and you don’t know what they are doing. They would not even explain like you did here [referring to 6-week programme] and just give you your next appointment’ (Caregiver 20)
Lack of communication from rehabilitation team	‘No one explains to us the results of these CT scans they do and what it means and what will happen to his body’ (Caregiver 7)
	‘They just tell us that the child has delayed milestone. But what does it mean, At least here you tell us more [referring to 6-week programme], later the child presents this way’ (Caregiver 19)
Rehabilitation benefits children	‘Attending physiotherapy clinic helps. My child was tight now is better. She can now walk for short distances, exercises helped a lot’ (Caregiver 14)
	‘Exercises and advice was to sit him for long to strengthen muscles of his body and head. That helped me’ (Caregiver 7)
	‘What help me and my child was physiotherapy. My child could not turn and laugh but now can’ (Caregiver 10)
	‘My child could not speak. After I started attend speech now I can understand when she talks, it’s still not very clear but I can hear her now’ (Caregiver 8)
Intrinsic inhibitors of caregivers
Lack of understanding	‘I just don’t know what to do when he does not want to eat and when he chokes on drinking and during feeding. No one tells us what to do’ (Caregiver 10)
Psychosocial barriers	‘I don’t have friends because they laughed at me and my child because she was disabled and the father left us as soon as the child was sick. My mom is my friend now’ (Caregiver 8)
	‘I just worry when he is sick with flu or when get a fits because I know after that he will get sicker and they might think I don’t take care of him. Sometimes I don’t even attend therapy when he is not well’ (Caregiver 23)
Physical stressors	‘I stress a lot when I think about him and his future. I just don’t know what will happen to him when I die because we are both sick and no one supports us’ (Caregiver 10)
	‘For me lack of sleep stresses me. I sometimes have to be up all night and he cries and do not want to go to sleep. The next morning I’ll still have to go to work’ (Caregiver 22)
Extrinsic barriers to caring for children with cerebral palsy
Lack of community support	‘People laugh at you when you walking with your disabled child. People laugh all the time. It’s very sad’ (Caregiver 19)
Stigma	‘Some people in the community would look at you and think that you deserved having a child like this more especially when you are young like us. They say we did not listen to our parents and we are cursed’ (Caregiver 10)
Lack of information	‘People still don’t know that our kids with disability are a gift like other kids. Some mothers I know don’t walk with them but they get paid for disability grant. I walk with my child and I’m not ashamed’ (Caregiver 18)
Financial constraints	‘Finances are always a challenge for me. I sometimes do not have money to take him to hospital for his physiotherapy appointment because I need money for three people to be able to ride the taxi’ (Caregiver 14
	‘My family does not support me. Being alone with no one to support is hard [no support from the father and also financially]’ (Caregiver 10)
Transport barriers	‘Some taxis would stop for you, but when they see that you have a disabled child on a buggy they would just leave you and rush say they are rushing. I hire a private car every time I come for therapy’ (Caregiver 17)
Personal enablers to coping with caring for child with cerebral palsy
Spiritual and religious support	‘Prayer helped me. I feel less sad as I pray’ (Caregiver 7)
Recommendations by caregivers
Community-awareness strategies	‘I think I would tell the community to take their kids to the clinics if they see that their growth is slower or they are later than the other kids same age to advise about caring for their children’ (Caregiver 8)
Support groups	‘Meet with other mothers to encourage them to take step to help their kids. For example, I attend clinics and I continue with their therapy programmes because at a long run they help. I’ll tell them about my child’ (Caregiver 14)