Does the training and support programme for parents of children with cerebral palsy enhance children’s quality of life?
Aim and background of project
This study focused on exploring the experiences of children with cerebral palsy (CP). Future research should aim to include the views of young people as well as those of the parents and other family members, so as to provide a full picture of the needs of children with CP and other long- term health conditions.
Positive benefits of massage
The training and support programme (TSP) is an intervention for parents and their children with disabilities, which teaches parents how to massage their child. Previous evaluations of the TSP have shown many positive benefits of the programme for parents in terms of improved parental psychosocial wellbeing. In addition, parents have reported improvements in their children’s functioning and in bonding between parent and child. However, to date, the views of children regarding this intervention have not been explored. The aim of this study was to evaluate the effectiveness of the training and support programme (TSP) in terms of the quality of life of children with CP and to document their views regarding their lives and their experience of attending the TSP.
The study
A total of 89 parents expressed an interest in taking part in the TSP with their child and were sent an information pack; 62 parents returned a completed consent form and questionnaire. Five parents withdrew from the study before starting the TSP and 8 were unable to start because of funding issues towards the end of the study. Thus, 49 children completed the TSP with their parents. Forty-three follow-up questionnaires were returned, thus, quantitative data analysis were conducted on data from these families. The children had a mean age of 8.7 years (SD 4.2), 24 (56%) were female, 38 (88%) had siblings, 27 (63%) attended a special school and 11 (26%) were receiving complementary therapy. All children had a diagnosis of CP, mean age at diagnosis was 10.5 months (SD 15.3), and 23 (54%) had co-morbid conditions.
The majority of parents were mothers (74%), were married or living with a partner (81%), were white/European (79%) and had educational qualifications (86%). Parents had a mean age of 43 (SD 10.0) years; 40% were working either full or part-time and 47% reported health problems.
A sub-sample (n=8) of children were randomly selected for interview from those children who, along with their parents, had given consent to be contacted regarding participating in the interview. Children were aged between 8 and 15 years (5 male, 3 female).
Method
Data were collected by self-administered questionnaires mailed to parents. Children aged 8+ years completed a questionnaire if they were able to. Data were collected at baseline (before commencing the TSP) and at 4-month followup. In addition, therapists completed observation forms during the TSP.
Results
Child consultation forms
At baseline, children’s mobility and musculoskeletal problems were the most frequent issues reported by parents (96%), followed by verbal communication problems (80%), feeding problems (69%), bowel problems (63%), sleep problems (63%) and lack of calmness (59%).
Interviews before the TSP
Interviews with children before the TSP revealed that they experienced a wide variety of difficulties. The children varied in their ability to communicate clearly, in their level of mobility and in their level of participation in school and home life. Themes emerging from baseline interviews related to life at school and social life in general, physical symptoms and difficulties, and treatment and health professionals.
Qualitative data from parent and child baseline questionnaires
Regarding living with CP, children admitted they sometimes became frustrated, upset or bored when they were unable to join in activities. However, children using wheelchairs perceived them as important in helping them to feel more independent. Parents described difficulties associated with caring, including the extra support and care their children needed, lack of information available, concerns around their children’s future, negative attitudes of society, and sadness at their children’s frustrations and the difficulties they faced. Parents described their children’s attributes, their love for their children and that caring for their children was sometimes very rewarding. Parents wanted to learn massage to help their children’s conditions, improving bonding, and spending one-to-one time together, and because of the improvement their children gained from touch.
Therapist observation forms
Therapists’ observations completed during the TSP supported parental reports of improvements in children’s conditions, the relationship between parents and children, and children’s enjoyment of massage (see below). Therapists provided emotional support during the TSP and described some of the common difficulties encountered during TSP delivery and how these were resolved.
Quantitative data from parent and child follow-up questionnaires
Questionnaire data collected before commencing the TSP and 4-month follow-up revealed statistically significant improvements in parental perceptions of children’s bowel movements (p=.001). In addition, there were trends towards statistically significant improvements in parental perceptions of children’s mobility (p=.071) and verbal communication (P=.015). There was a trend towards improvement on parental stress (P=.070). No statistically significant improvements were found on child study variables as reported by child or parent proxy reports.
A number of issues were encountered in relation to children’s self-reported quantitative data, including the small number of children who were old enough and sufficiently able to self-complete questionnaires. This problem was exacerbated by a smaller than expected sample size.
Qualitative data from parent and child follow-up questionnaires
Children and parents reported improvements in children’s physical problems and in relaxation, how much they enjoyed the massage, and how much they liked their therapists. In addition, parents described how much they enjoyed spending the relaxed one-to-one time with their children during massaging sessions, and learning a new skill that they could use to help their children’s physical and emotional wellbeing. They described ways they found of fitting massage into their daily routine to continue after the TSP was completed.
Child follow-up interviews
Regarding the TSP, interviews revealed that the TSP had positive effects for most of the children. All of the children enjoyed the relaxed feeling that the massage induced, during the massage itself or immediately afterwards.
There was a difference between these two preferences, in that some child participants enjoyed the actual physical experience of being massaged by their parents, whereas others preferred the relaxed state that resulted from massage. Qualitative data from therapists and parents supported these findings.
Case study
The aim of this case study was to illustrate the experience of one child and parent as they progressed through the TSP. The therapist’s observations and comments from the parent’s questionnaire have been used. Names have been changed to protect anonymity.
Family details
Child: Sukhi, female, 12 years old, has 1 sibling aged 13 years, she was diagnosed with CP aged 4 months.
Parent: Reeta, 38 years old, Sukhi’s mother, has formal educational qualifications but is unable to work due to her daughter’s ill health.
Therapist observations
Session 1
In the telephone consultation session Reeta reported Sukhi’s problems to include CP, epilepsy, no verbal communication, visual impairment, chronic constipation, bladder weakness and poor sleep.
Session 2
During the first massage session the therapist found Sukhi to be quiet and withdrawn, whilst receiving the massage Sukhi gave no reaction or acknowledgment. During the stomach massage the therapist described Sukhi’s stomach as hard and distended. The therapist was told by Reeta that Sukhi has chronic constipation that can cause her much discomfort and that she needs medication to produce a bowel movement. In addition, Sukhi has poor sleep. Reeta believes that this need may be due to the fear of being alone, caused by her serious visual impairment.
Session 3
This session, Suhki’s stomach felt much less distended and only a little hard to the touch. Although initially Sukhi tensed during the stomach massage and seemed a little uncomfortable, she soon relaxed again. Reeta informed the therapist that Sukhi had had several bowel movements during the previous week and had also pooed at school. The school staff had asked her if Sukhi’s medication had been altered to cause this effect and Reeta had told them about the tummy massage. They were very interested to hear about the TSP.
Session 4
Reeta reported to the therapist that the positive effects of the massage on Sukhi’s bowel movements had been continuing, so that medication for constipation only rarely needed to be given. Sukhi continued to be more responsive to massage this week, relaxing and smiling throughout the chest massage and even sleeping for a few minutes during her back massage.
Session 5
Reeta reported that Sukhi’s sleep pattern had improved; she had been more relaxed before being put to bed and, on several occasions, had fallen asleep without having someone lying beside her in bed. This had surprised Reeta the first time it happened, but meant she was able to sleep in her own bed all night without any interruption from Sukhi. The family noted that Sukhi also seemed more rested on waking each morning.
Sessions 6-7
When Sukhi arrived for session six, she presented to the therapist as a very happy little girl; she made a giggling noise, which she had not done in sessions before. To the therapist, her eyes seemed much clearer and brighter, she had put on weight, her skin and hair were less dry and positioning of her arms and hands were less tensed. The therapist also felt Reeta seemed more energetic and confident, her posture seemed improved, her shoulders were less rounded/raised and she was happy and smiling during the whole session.
“I noted immediately that Sukhi has more flesh-on-the-bones today! She has certainly gained some weight, which is very positive. … More flexibility in ankles/wrists/elbows. Fingers relaxed today and not held in tight fists as previously noted. I noted that when tummy massaged Sukhi giggled/ sighed loudly and kicked out her legs - very happy today! Also unusual to see movement such as this! Sukhi loves her chest massage and closed her eyes/sighed. She responded to my voice each time I spoke to her by smiling at me/towards me.”
Session 8
At session eight the improvements in Sukhi appeared to have continued, the therapist commented that her joint flexibility had improved, her thighs were chunkier and her hands were no longer clenched into fists. Sukhi now enjoyed tummy massage and has regular bowel movements - school staff are still amazed that Sukhi does a poo during the school day.
Reeta’s comment written on the questionnaire after completing the TSP was:
“I would like to thank all involved in providing my daughter and myself with this opportunity. We have found something positive and special that I can do for her to enable her to relax. The therapist who has worked with us is a fabulous teacher, very kind and inspirational. Although I have probably not answered more questions in the survey – the overall benefits to my daughter have been great and just learning the techniques to help with bowel movements would have been enough, we have learnt much more. It would have been great to have known this years ago. Best wishes to all and thank you.”
This case study demonstrates how Sukhi, although initially unresponsive to massage, over the sessions began to enjoy it more and more, becoming very responsive to the massage. In addition, Sukhi experienced many improvements in her condition, including improved bowel function (also noticed by her school), improved sleep patterns (which her mother also benefits from) and flexibility in her joints. In addition, she put on weight during the programme.
Conclusion
This study focused on exploring the experiences of children with CP. Future research should aim to include the views of young people as well as those of the parents and other family members, so as to provide a full picture of the needs of children with CP and other long-term health conditions.
Project Design
This study was a pre-test post-test design, with a nested qualitative study. Children’s views were explored in more depth via interviews.
This information is not meant to replace the advice of any physician or qualified health professional. The information provided by Cerebra is for information purposes only and is not a substitute for medical advice or treatment for any medical condition. You should promptly seek professional medical assistance if you have concerns regarding any health issue.