lable at ScienceDirect

Complementary Therapies in Clinical Practice 16 (2010) 47–51

Contents lists avai

Complementary Therapies in Clinical Practice

journal homepage: www.elsevier .com/locate /ctnm

Children’s experiences of their participation in a trainingand support programme involving massage

Lesley Powell*, Anna Cheshire, Laura SwabyCoventry University, Coventry CV1 5FB, UK

Keywords:ChildrenCerebral palsyTraining and support programmeMassage

* Corresponding author. Self-Management Programin Health & Lifestyle Interventions, Coventry Universit5FB, UK. Tel.: þ44 24 7688 7498.

E-mail address: l.powell@coventry.ac.uk (L. Powel

1744-3881/$ – see front matter � 2009 Elsevier Ltd.doi:10.1016/j.ctcp.2009.06.013

a b s t r a c t

This study reports on a research project that aimed to extrapolate the value of the Training and SupportProgramme (TSP), involving massage, among children with cerebral palsy (CP). Data gathering includedinformation from interviews with a sub-sample of children and the TSP therapist observation forms. Datawere analysed using standard thematic content analysis to identify key themes and issues of importanceto children. Results showed that children enjoyed the relaxing aspects of massage and reported a numberof improvements in their health such as improved muscle relaxation, mobility and bowel movements,and reduced pain. Future studies may need to explore other ways of extrapolating data from this pop-ulation and similar populations where communication is impaired due to disability, but at the same timeensure that their views are listened to and acted upon.

� 2009 Elsevier Ltd. All rights reserved.

1. Background

Cerebral palsy (CP) can be described as:

‘‘A group of permanent disorders of the development of move-ment and posture, causing activity limitation, that are attributedto non-progressive disturbances that occurred in the developingfetal or infant brain. The motor disorders of cerebral palsy areoften accompanied by disturbances of sensation, perception,cognition, communication, and behaviour, by epilepsy, and bysecondary musculoskeletal problems.’’ (p.9 Ref. [21])

Massage aids circulation of blood and lymph1 and may haveimplications for muscular tension, a key problem for children withcerebral palsy (CP). Further, massage aids muscle relaxation which,in addition to relieving muscle tension and stiffness, can promoteflexibility. Initial research has shown that massage may havebenefits for children with CP. In a comparative study conducted inthe USA, Hernandez-Reif et al.8 studied the effects of massage onchildren with CP. Twenty children received either 30 min ofmassage or 30 min of reading twice a week for 12 weeks. Childrenwho received massage had reduced spasticity, gained more muscleflexibility and motor function and had enhanced positive socialinteraction. In a single case study, Emly6 found that daily abdominal

me, Applied Research Centrey, Priory Street, Coventry CV1

l).

All rights reserved.

massage helped to relieve the constipation of a young man withquadriplegic CP (QCP). Stewart23 considered the therapeuticbenefits of massage for children with QCP and notes from her ownexperience that children with QCP smiled more often and appearedmore relaxed after receiving massage. Three Chinese studiesreported massage for children with CP as part of an interventionwhich involved many other types of Complementary and Alterna-tive Medicine (CAM)/treatment.7,25,28 Thus, although the studiesindicated a positive effect for the interventions it is not possible todetermine whether these results were related directly to massage.No studies were found to specifically explore children’s experienceof receiving massage.

The Training and Support Programme (TSP) provides parents withbasic massage skills that they can use in the care of their childrenwith disability and life limiting conditions in the home environment.Parents are trained in massage by therapists already qualified intherapeutic massage, and trained to deliver the TSP. Research on theTSP has shown that parents of children with CP report benefits totheir children including improved sleep quality and eating, enhancedmobility, more relaxed and happier (e.g. see Ref. [2,20]). Thesebenefits may be important on two counts. Firstly, young persons withCP are reported to be at greater risk of poorer quality of life, (e.g. seeRef. [13]), these benefits may help to reduce this risk. Secondly,complementary and alternative medicine (CAM) has becomeincreasingly popular among children with long-term health condi-tions15,22 with massage being the most popular type of CAM amongstchildren with CP.9,15,22 Therefore, it is important to understand anddocument any perceived benefits by children themselves.

L. Powell et al. / Complementary Therapies in Clinical Practice 16 (2010) 47–5148

Often research exploring the experiences of children with CP hastaken the form of proxy assessments by parents or carers. However,the views of parents or carers may not always reflect exactly howthe child feels11,24 although it may be that the two perspectivesarise from genuine differences of opinion between the twoparties.27 Overall, few studies have sought to explore the views ofchildren for such reasons as communication difficulties or age (e.g.compared with adults, children have less-developed cognitive skillsmaking comprehension and articulation of abstract concepts moredifficult).27

The aims of this study were to extrapolate the value of theTraining Support Programme (TSP) involving massage amongchildren with cerebral palsy (CP). Results will contribute to thescant literature regarding children’s perspectives in the context ofa CAM therapy.

2. Sample and methods

2.1. Sample

Parents and children were recruited through organizationsworking with children with CP and parent support groups. A total of89 parents expressed an interest in taking part in the TSP with theirchild and were sent an information pack; 62 parents returneda completed consent form. Five parents withdrew from the studybefore starting the TSP and eight were unable to start because offunding issues at the end of the study. Thus, 49 children completedthe TSP with their parent. However, six parents were lost at follow-up therefore 43 parent and child pairs completed the TSP and theassociated research.

Entry criteria were:

Children with CP aged 4–18 years;Parent or main carer able to complete the telephone consulta-tion and attendSeven training sessions with the child.

Exclusion criteria were:

Contra-indications for massage (e.g. recent major surgery);Inability to receive instruction in English (we did not havesufficient funding for translation of training materials);

A sub-sample of eight children were randomly selected forinterview from those children who, along with their parents, hadgiven consent to be contacted regarding participating in theinterview.

2.2. Procedure

Ethical approval for the study was granted by the CoventryUniversity Ethics Committee.

All parents and children expressing an interest in the study weremailed an Information Sheet and Consent Form by the ResearchTeam. The TSP was delivered in a number of geographical locationsin England in accord with the locations of therapists and partici-pating families. Researchers independent of the TSP deliverycollected and analysed the data.

Quantitative and qualitative data were collected for this study.However, this paper reports on the qualitative data only. Quali-tative data were collected by interviews at baseline (immediatelybefore the TSP) and 4-month follow-up (8 weeks on completionof the TSP), and therapist observation forms completed duringthe TSP. Child demographics (e.g. age, sex) were collected atbaseline only.

2.2.1. Interviews (n¼ 8)Face-to-face interviews were conducted with consenting

children. A schedule was used to guide the semi-structuredinterview. Literature exploring the most appropriate ways tointerview and approach children with disabilities was consultedin the development of the schedule.14,16 Baseline interviewsexplored children’s views on their quality of life and expectationsof the massage. Follow-up interviews examined children’s expe-riences and opinions of the TSP. Interviews were all conducted inthe children’s own home, with one parent present. Prior to theinterview commencing, the purpose of the interview wasexplained to both child and parent together with the right to stopthe interview at any time. Each child signed a consent formstating that they were happy to take part and that they couldstop at any time if they wished to (two parents signed on thechild’s behalf due to writing difficulties). Interviews ranged from20 min to 1 h and 15 min. All interviews were audio recorded andtranscribed verbatim.

2.2.2. Therapist observation forms (n¼ 43)From sessions 2–8, each therapist completed an Observation

Form for each parent–child dyad after each session. The purpose ofthe Observation Form was for the therapist to monitor the progressof each family through the TSP by recording observations madeduring the sessions regarding the child’s response to the massage,parent’s response to learning the massage, perceived changes in thechild.

2.3. Training and support programme (TSP)

The TSP comprises eight weekly sessions. The first session isa consultation between parent and therapist to determine thechild’s medical history and diagnosis and is conducted by tele-phone. During sessions 2–8, one therapist works with one parent–child dyad during weekly one-hour sessions, training the parent inmassage. The precise techniques used are tailored to meet thespecific needs of each child and parent. The same therapistworked with the same parent–child dyad throughout the 8-weekProgramme providing continuity of care. Please note the TSP doesnot aim to treat or offer a cure.

2.4. Analysis

Data from the interviews and observation forms were analysedusing standard content analytic techniques.12 This method iscommonly used within the social sciences to analyse transcriptsand/or large amounts of textual data. Using a constant comparativetechnique, each transcript was read and re-read to gain familiarity.A coding framework was established, that is, key issues raisedwithin the communication were noted and compared to transcriptsuntil a point of saturation. The key issues raised within the tran-script were then assembled into themes and used as headings forease of reporting. In addition, one case vignette illustrates theexperience of the TSP for one parent: child pair. All names havebeen changed to ensure anonymity.

3. Results

3.1. Child characteristics observation forms (n¼ 43)

Children had a mean age of 8.7 years (SD 4.2), 24 (56%) werefemale, 38 (88%) had siblings, 27 (63%) attended a special schooland 11 (26%) were receiving complementary therapy includingconductive education, acupuncture, Noni juice, tui-na massage,aromatherapy, hydrotherapy and cranial osteopathy. All children

L. Powell et al. / Complementary Therapies in Clinical Practice 16 (2010) 47–51 49

had a diagnosis of CP, mean age at diagnosis was 10.5 months (SD15.3), 23 (54%) had co-morbid conditions including: visualimpairment, epilepsy, gastromony fed, hydrocephalus, develop-mental delay, chronic lung disease, learning difficulties, autisticspectrum disorder, reflux, recurring urinary tract infections, con-stipation, food allergies, sensory impairment, Down’s syndrome,absence of speech, incontinence and scoliosis.

3.2. Child characteristics interview sub-sample (n¼ 8)

Children were aged between 8 and 15 years (5 male, 3 female).All parents were mothers and had self-reported their children’sdiagnosis as being CP. Co-morbid conditions included hearing lossand visuoperceptual problems. Interviewer observations andcomments made by mothers during interviews suggested that thenature of CP symptoms ranged from hemiplegia (affecting one sideof the body) or diplegia (affecting the lower part of the body) tospastic quadriplegia (total body involvement). Children’s verbalcommunication ranged from fluent conversation to short answersrequiring parents’ assistance for interviewer comprehension.

3.3. Baseline interviews

3.3.1. Thoughts and expectations about the massageNone of the children expressed any specific expectations about

taking part in the TSP. The interviewer felt that some of thechildren were a little apprehensive and attempted to answer anyquestions to put their minds at ease. Other children had had someprevious experience of massage. One child had learnt how tomassage other children’s hands and feet at Brownies, which shehad enjoyed.

‘‘We did it on ourselves at Brownies, then I did it on my Mum,then my sister and then my Dad’’ P9Interviewer: ‘‘What kind of effect did the massage have?’’Child: ‘‘Very relaxed, almost too relaxed!’’ M1

3.4. Attending the TSP: therapist observation forms

Therapists were able to observe positive changes such asimprovements in the child’s condition, how much the child enjoyedmassage and the relationship between parent and child.

‘‘Mum informed me that she was pleased to note that Gary’scommunication skills are much improved recently. The class-room carers had also mentioned these changes to her, and thatGary was much more focussed in lessons and took an activepart’’ N12‘‘The good news is that Jagrup has grown 2 inches since she waslast measured 6 weeks ago. The physiotherapist has put thisdown to the once a week physio and the TSP massage.’’

Regarding the child’s response to the massage; often the childwas relaxed and enjoyed the massage, sometimes falling asleep.However, even if the child generally enjoyed the massage some-times they had bad days and were not in the mood. Therapistsresponded appropriately to this, often by shortening the session forthat week and not pressurizing the child when they did not feel likeit. Some children started off not wanting massages but with gentleencouragement and as each session progressed they relaxed easilyinto the massage.

Each parent and child pair presented with their own sets ofissues and challenges. Therapists used their observations to describesome of these problems or issues and how they were resolved.

‘‘Mother reported that David regularly suffers from terrible painin the back of his head. I advised her that it could be caused bythe tension in his neck/shoulders and then showed her someadditional massage techniques, which would help to ‘smooth-out’ the tension very quickly.’’ session 1Mother reported that David had suffered severe pain in his head2/3 times during the week but had remembered my advice andconcentrated on the neck/shoulder areas when massaging hisback’’, session 2‘‘Mother also reported that David had not had the severe headpain for over four weeks now’’ N13, session 7

Subtle changes in the way children communicated were themost salient and poignant improvements that therapist’s observed:

‘‘Lucy ‘hooked’ her hand around my arm as I leaned towards thebed. Her mother seemed surprised at this as Lucy has littleindependent movement and this was unusual for her.’’‘‘Sam was keen to get started. He points at his feet to have hisshoes taken off and then at the massage table indicating that hewants to get on it .Even though Sam has no way of verballycommunicating you can clearly tell he enjoys the massage. .Itwas lovely to see child so relaxed.’’

3.5. Follow-up child interviews

3.5.1. Enjoyable aspects of the TSPMost children reported that the most enjoyable aspect of the

TSP was the relaxing effect of the massage that in turn had a posi-tive effect on how they were feeling generally. Interestingly, someparticipants preferred the massage itself whereas others preferredthe way that they felt immediately after having a massage. Oneparticipant particularly enjoyed having his arms and legs massaged,another her legs, and two particularly enjoyed having the massageon the stomach area. One participant said that she would give themassage ‘‘ten out of ten’’ SW3.

‘‘It was very relaxing.it loosened everything’’ CS41‘‘I was falling asleep.’’ SW3‘‘I think I liked my stomach being done.’’ G1

3.5.2. Beneficial aspects of the TSPChildren reported a number of benefits as a result of the

massage including muscle relaxation, improved bowel movements,and decreased nausea and pain.

‘‘I thought it was good because my muscles were like morerelaxed after.’’ G1‘‘Pain, it helps with my pain sometimes.’’ P9

The relaxing effect of massage on child participants’ musclesresulted in positive effects on other aspects of life, such as mobilityand writing.

‘‘.it helps with my writing.because sometimes when it’stight, my hand doesn’t want to write very well, and when it’srelaxed it wants to write.’’ P9‘‘I would like to do some more massage it might help my legs a bitmore.it helps you like physically. .Well when we started offwith my feet, my feet were a bit funny to start off with but thenafter like a few massages later but then they got a bit better.’’G1

3.5.3. Less enjoyable aspects of the TSPOne participant expressed a strong dislike for the need to take

his clothes off in front of the therapist and had felt quite uncom-fortable doing this.

L. Powell et al. / Complementary Therapies in Clinical Practice 16 (2010) 47–5150

‘‘The one thing that I didn’t like was having to take my t-shirtand trousers off. I didn’t like doing that in front of other people.’’C2

It should be noted that the therapist adjusted to this situationand worked with the child to massage the top half of him withouthis t-shirt on but still with the trousers on, and then put his t-shirtback on but took his trousers off to massage his legs. This sameparticipant found that being required to stay in one position fora significant period of time was very difficult and ‘‘a little bitannoying at times.’’ (C2). He did not enjoy the massage around hisstomach or back. However, he still felt that he would have quiteliked the sessions to have been a little bit longer.

One participant found that lying on his front was particularlyuncomfortable and so the therapist adapted to minimise this.Another participant was also unable to lie front down and so thetherapist adapted the massage whilst the participant was on theirside.

3.5.4. General thoughts about the TSPAll of the children had enjoyed taking part and were glad that

they had tried it. Most wanted to carry on with the massage in thefuture.

All children felt that their parents had done well in learning themassage techniques, even if they were not doing it quite right tostart with. They also reported having enjoyed spending the timewith their parents. One participant reported that she had found hermother massaging her to be ‘‘quite strange’’ at first but then gotused to it over time SW3

‘‘Mum pressed a little bit too hard.No one gets it right firsttime.’’ C2

All child participants and their parents reported being happywith their therapists and felt that they were friendly, and conversedwith and respected the children during the sessions as well as theparents.

‘‘She was really nice to me’’ CS42

The location of the TSP sessions was arranged individuallybetween the therapist and the family and took place either in thefamily home, child’s school, or therapists’ home/clinic. All partici-pants felt that the rooms in which the sessions took place werecalm and quiet. One participant found the room to be a little toocold and the sessions too early in the morning. He would haveenjoyed the sessions more if they could have been later in the dayand at the family home. One child particularly commented on thepleasant atmosphere the therapist had created with music.

‘‘It was quite good because she liked turned off all the light offand stuff and put music on, something to do with the rain-forest.’’ G1

Most participants felt that the length and number of thesessions was about right, although two of the participantsconflicted in their views about wanting the sessions to be longer orshorter.

‘‘It (session) could have been a little bit longer.’’ C2‘‘I think they (sessions) could have been a little bit shorter.’’ CS42

4. Discussion

The aims of our study were to extrapolate the value of theTraining and Support Programme (TSP) involving massage amongchildren with CP. Results suggest that the Training and SupportProgramme (TSP) was valued by participating children in a number

of ways including improved physical mobility, reduced pain and therelaxed feeling induced by the massage. Massage was somethingenjoyable that they could share with their parent. The importanceof a therapy which is also enjoyable is emphasised by Mulderij17,18

who found that children reported finding it difficult to deal withhealth professionals who want them to do therapy and exercises,which they did not always feel like doing.

Although some of the younger children found it difficult toreport how the massage had helped them, the older children wereable to report that the relaxation of their muscles had increasedtheir ability to do certain activities, such as walking and writing.

These findings were supported by data from the massagetherapists and previous research on the TSP, which suggests thatthe intervention may improve children’s physical, mental,emotional and behavioural well-being, parent and child bonding,and parental well-being.3,20 In addition, these data also demon-strated the vital role TSP therapists played in the Programme. Thisis extremely important given the sometimes difficult relationshipparents of children with disabilities sometimes report with healthprofessionals.4,5,19

The TSP is a structured programme, but with flexibility within itto meet the needs of each family. What emerges from the therapistobservations is the uniqueness of each family. There is also vari-ability within each week: one week a child may be open to themassage the next week not feel like it at all. Thus, when a familycome through the therapist’s doors they do not know what toexpect. Therapists adapted quickly and flexibly to meet the needs ofeach parent and child. Therapists’ used their skills and generatedsolutions to ensure each family’s individual needs were met andthey could gain maximal benefit from the TSP.

These reported benefits are important. They may help toenhance children’s self-concept and their quality of life10,17,18,26 andtherefore warrant further research. In particular, it is important todetermine whether the TSP or massage per se, is a helpful inter-vention to ameliorate and reduce some of the symptoms associatedwith CP.

5. Conclusions

The qualitative data provided valuable insight into children withcerebral palsy and their perceptions of the TSP – an interventionbased on massage delivered by parents. Alternative methods ofdocumenting changes following the TSP require exploration.Research may also consider exploration of methods to interviewchildren with more severe communication difficulties. This isimportant if their views are to be taken into consideration. At policylevel (Department of Health 2002), there is an increased emphasison the importance of ascertaining user views including those ofchildren. In particular, how services are delivered. Further, TheDepartment of Health (2002) stresses the need to ensure thatchildren with illness or disabilities are cared for not only in terms oftheir medical, social and educational needs but also in the light oftheir own views and decision-making.

References

1. Arnould -Taylor WE. Arnould -Taylor’s principles and practice of physical therapy.4th ed. Cheltenham, UK: Nelson Thornes; 1997.

2. Barlow JH, Cullen-Powell LA, Cheshire A. The Training and Support Programme(involving basic massage) for parents of children with cerebral palsy: animplementation study. Journal of Body Movement Therapies 2007;11(1):44–53.

3. Barlow JH, Cullen-Powell LA, Williams HL. The Training and Support Pro-gramme for parents of children with ataxia: a pilot study. Psychology, Healthand Medicine 2007;12(1):64–9.

4. Beresford BA. Resources and strategies: how parents cope with the care ofa disabled child. Journal of Child Psychology and Psychiatry 1994;35(1):171–209.

L. Powell et al. / Complementary Therapies in Clinical Practice 16 (2010) 47–51 51

5. Cheshire A. Positive reinterpretation in families caring for a child with cerebralpalsy; 2006. Unpublished doctoral dissertation, Coventry University, UK.

6. Emly M. Abdominal massage. Nursing Times 1993;89(3):34–6.7. He J, Dong XL, Duan YH, Zhou HL, Huang CQ, Liu Y, et al. Randomized controlled

study on AMIE methods for treatment of movement disorder in the child ofconvulsive cerebral palsy. Zhongguo Zhen Jiu. [Chinese Acupuncture & Mox-ibustion] 2007;27(11):797–800.

8. Hernandez-Reif M, Field T, Largie S, Diego M, Manigat N, Seonanes J, et al.Cerebral palsy symptoms in children decreased following massage therapy.Early Child Development and Care 2005;175(5):445–56.

9. Hurvitz EA, Leonard C, Ayyangar R, Nelson VS. Complementary and alternativemedicine use in families of children with cerebral palsy. Developmental Medi-cine & Child Neurology 2003;45(6):364–70.

10. King GA, Cathers T, Polgar JM, MacKinnon E, Havens L. Success in life for olderadolescents with cerebral palsy. Qualitative Health Research 2000;10(6):734–49.

11. Kramer TL, Phillips SD, Hargis MB, Miller TL, Burns BJ, Robbins JM. Disagree-ment between parent and adolescent reports of functional impairment. Journalof Child Psychology and Psychiatry 2004;45(2):248–59.

12. Krippendorff K. Content analysis: an introduction to its methodology. 2nd ed.Thousand Oaks, CA: Sage; 2004.

13. Livingston MH, Rosenbaum PL, Russell DJ, Palisano RJ. Quality of life amongadolescents with cerebral palsy: what does the literature tell us? DevelopmentalMedicine & Child Neurology 2007;49(3):225–31.

14. Lloyd V, Gatherer A, Kalsy S. Conducting qualitative interview research withpeople with expressive learning language difficulties. Qualitative HealthResearch 2006;16(10):1386–404.

15. McCann LJ, Newell SJ. Survey of paediatric complementary and alternativemedicine use in health and chronic illness. Archives of Disease in Childhood2006;91:173–4.

16. Minkes J, Robinson C, Weston C. Consulting the children: interviews withchildren using residential respite care services. Disability and Society1994;9(1):47–57.

17. Mulderij KJ. Research into the lifeworld of physically disabled children. ChildCare Health & Development 1996;22(5):311–22.

18. Mulderij KJ. Peer relations and friendship in physically disabled children. ChildCare Health & Development 1997;23(5):379–89.

19. Pimm PL. Some of the implications of caring for a child or adult with cerebralpalsy. British Journal of Occupational Therapy 1996;59(7):335–40.

20. Powell LA, Barlow JH, Cheshire A. The Training and Support Programme forparents of children with cerebral palsy: a process evaluation. ComplementaryTherapies in Clinical Practice 2006;12:192–9.

21. Rosenbaum P, Paneth N, Leviton A, Goldstein M, Bax M. A report: the definitionand classification of cerebral palsy April 2006. Developmental Medicine & ChildNeurology 2007;49:8–14.

22. Samdup DZ, Smith RG, Song S. The use of complementary and alternativemedicine in children with chronic medical conditions. American Journal ofPhysical Medicine & Rehabilitation 2006;85(10):842–6.

23. Stewart K. Massage for children with cerebral palsy. Nursing Times2000;96(1):50–1.

24. Varni JW, Burwinkle TM, Sherman SA, Hanna K, Berrin SJ, Malcarne VL, et al.Health-related quality of life of children and adolescents with cerebral palsy:hearing the voices of the children. Developmental Medicine & Child Neurology2005;47(9):592–7.

25. Wang Y, Zhu WL, Dong YF. Massage manipulation of supplementing marrowand kneading tendon in treating 30 children with spastic cerebral palsy.Zhongguo Zhong Xi Yi Jie He Za Zhi Zhongguo Zhongxiyi Jiehe Zazhi. [ChineseJournal Of Integrated Traditional And Western Medicine/Zhongguo Zhong Xi Yi JieHe Xue Hui, Zhongguo Zhong Yi Yan Jiu Yuan Zhu Ban] 2008;28(4):363–5.

26. Waters E, Maher E, Salmon L, Reddihough D, Boyd R. Development ofa condition-specific measure of quality of life for children with cerebral palsy:empirical thematic data reported by parents and children. Child Care Health &Development 2005;31(2):127–35.

27. White-Koning M, Arnaud C, Bourdet-Loubere S, Bazex H, Colver A, Grandjean H.Subjective quality of life in children with intellectual impairment – how can itbe assessed? Developmental Medicine & Child Neurology 2005;47(4):281–5.

28. Zhou XJ, Zheng K. Treatment of 140 cerebral palsied children with a combinedmethod based on traditional Chinese medicine (TCM) and western medicine.Journal of Zhejiang University. Science B 2005;6(1):57–60.