Parents' Attitudes Toward the Use of Complementary Therapy by Their Children with Moderate or Severe Cerebral Palsy

Abstract

Objective:

To describe the use of, and attitudes toward, complementary therapy (CT) by parents of children with moderate to severe cerebral palsy.

Methods:

Parents of 32 children with cerebral palsy (age 5–12 years) enrolled in a randomized trial of cranial osteopathy prospectively participated in semi-structured interviews in the home to explore the use of CT and views regarding access to and expectations of these therapies. Interview transcripts were analyzed thematically, and content analysis was used to determine the frequency of use of different therapies.

Results:

Sixteen children (50%) had received one or more types of CT, although only three were currently receiving any CT. The primary reasons for trying CT were to reduce children's pain and improve physical function. Parents had limited knowledge of the range of, and possible indications for, CT and expressed concerns about CT safety and effectiveness. Practical considerations of time and cost were also identified. Some parents had strong beliefs about the benefits, and, overall, parents indicated a high level of commitment to finding any treatments, conventional or CT, to help their children.

Conclusion:

Parents of children with cerebral palsy want to help their child, but they need information, guidance, and practical support to facilitate their decision-making regarding the use of CT. A clearer understanding of factors predictive of optimal outcomes will enable resources to be targeted effectively.

The use of complementary and alternative medicine (CAM) continues to increase in the developed world, with estimates suggesting that between 23% and 62% of adults and children with and without chronic health conditions may use one or more therapies.¹ In the United Kingdom, yearly adult use has been estimated to be 20%–28%^2,3 and use in children to be 18%–37%.^4,5 There has been considerable debate about the definition of CAM, but an accepted definition is “any health improving technique outside of the mainstream of conventional medicine,”⁶ which includes medicinal (complementary medicine) and nonmedicinal (complementary therapy) strategies.

Studies comparing healthy and ill children demonstrate increased use in children with both acute and chronic conditions compared with healthy children⁷ and suggest that approximately half of children with cerebral palsy (CP) have used complementary therapy (CT).⁸ In this latter survey in 213 U.S. families with a child with CP, massage therapy and aqua therapy were the most commonly used CTs, and children who were younger and lacked independent mobility were more likely to have accessed CTs. In contrast, surveys of children with other chronic conditions have found that it is older children who are more likely to use CT.^9,10

In the United Kingdom, most CTs are accessed outside the National Health Service (NHS). However, the potential role of CTs within the NHS has recently been highlighted,¹¹ and access to CT has been included in the Department of Health's patient choice agenda.¹² Recent research suggested that patients want NHS professionals to be more open to the concept of CT and to have a greater level of knowledge about the therapies,¹³ but relatively little is known about access to and expectations of CT, particularly for children.

Evaluating the effectiveness of different CTs is clearly important, particularly if such therapies are to be more widely available in the NHS, but the evidence base for their use, particularly in children, is not strong.¹⁴ Two trials of children with CP randomly allocated to cranial osteopathy, acupuncture, or a waiting list support improvements as a result of treatment, but there are some limitations with study design and interpretation of findings.^15,16 In a recent randomized controlled trial of the effectiveness of cranial osteopathy for children with CP, there was no evidence that cranial osteopathy resulted in sustained improvement in motor function, pain, sleep, or quality of life in children aged 5–12 years, although carers of those who received cranial osteopathy more commonly reported a perceived improvement in their child's global health.¹⁷ As part of this trial, parents of children who were assigned to the control group were invited to take part in two semi-structured interviews providing a partial attention control. At the time of the interviews the children assigned to the control group had not received any cranial osteopathy. The interviews focused on parents' views surrounding the diagnosis of CP and the use of services for their children, including any use of CT. This article reports the results from the interviews that pertain to CT, parents' perceptions about CT with regard to their own children, and whether parents are accessing or have ever accessed CT for their children.

Methods

Participants

Participants in the current study were the main caregiver parents/guardians of children who took part in a randomized controlled trial of the effectiveness of cranial osteopathy for cerebral palsy.¹⁷ That study involved 142 children aged 5–12 years with CP and varying levels of physical function (Gross Motor Function Classification System¹⁸ levels II–V). Families were recruited from greater London and southwest England. Children with mild CP were excluded, as were those who had received cranial osteopathy (also known as osteopathic manipulative treatment) in the previous 12 months and those from non–English-speaking families. Only 8 families approached to participate in the trial declined. Full details of the recruitment and trial methods are reported elsewhere.¹⁷ After completion of the final outcome assessments at 6 months, children in the control group were offered a series of six sessions of cranial osteopathy (the intervention) as part of the “waiting list”’ design of the trial. Ethical approval was obtained from the Southwest Multicentre Research Ethics Committee and all participants provided written informed consent.

Procedure

Following the randomization of their child to the control group in the trial, parents were invited to participate in two semi-structured interviews, both taking place within 10 weeks of enrolment. A researcher arranged to visit parents at their home for the interviews, which focused on several topics related to their child's diagnosis and treatment of CP and use of and attitudes toward CT. Parents were first asked whether their children had received any CTs and were shown a list that included cranial osteopathy, herbal remedies, homeopathy, reflexology, and acupuncture. The focus was on practitioner-delivered therapies, rather than on parent-delivered or over-the counter therapies. Parents were subsequently asked whether their children had received any CTs not on the list. For each treatment that the child had received, the parents were asked about the duration of treatment, how the parents had heard about it, what their expectations were for the treatment, and whether they felt it was helpful for their child.

Basic demographic and medical data about the children were collected from the parents, allowing the children to be classified according to the Gross Motor Function Classification System¹⁸ as having moderate or severe CP. Parental classification has been shown to be reliable when compared with professional classification.^19,20

Analysis

Interviews were recorded and transcribed verbatim. Content analysis was used to determine the proportion of children who had received one or more CTs, which CT was the most frequently received therapy, and the distribution of therapy use across the families. Chi-squared statistics were used to determine whether use of CTs differed according to demographic or medical variables.

A thematic analysis of the transcripts was conducted to explore parents' experiences of CTs. Transcripts were read and re-read by the first and last authors, with independent coding and identification of emerging themes. Subsequent discussion resulted in agreement on the principal themes.

Results

Of the 43 families in greater London invited to participate in the interviews, parents (primarily mothers) of 32 children participated. Demographic and medical characteristics of the children are shown in Table 1. The 11 nonrespondents did not differ significantly for any demographic or medical characteristics from the 32 who participated.

Table 1.

Demographic and Medical Characteristics of Children Included in the Study and of Those Who Did Not Participate

Characteristic	Children who had received 1 or more CTs (n=16)	Children who had received no CTs (n=16)	Total sample (n=32)	Children not recruited (n=11)
Mean age of children (range) (y)	7.4 (5–11)	7.3 (5–12)	7.3 (5–12)	6.4 (5–10)
Female children	6 (38)	6 (38)	12 (38)	5 (46)
Socioeconomic status^a
1 (highest)	12 (75)^*	7 (44)^*	19 (59)	5 (46)
2	2 (13)	0 (0)	2 (6)	4 (36)
3	2 (13)	5 (31)	7 (22)	2 (18)
4 (lowest)	0 (0)	4 (25)	4 (13)	0 (0)
Ethnic group of main caregiver
Asian	2 (13)	1 (6)	3 (9)	3 (27)
Black	3 (19)	8 (50)	11 (34)	1 (9)
White	11 (63)	7 (44)	18 (56)	7 (64)
School
Mainstream	7 (44)	6 (38)	13 (41)	3 (28)
Special needs	9 (56)	10 (63)	19 (59)	8 (73)
Has difficulties with communication	11 (63)	14 (88)	25 (78)	9 (82)
Seizures
Yes	2 (13)^**	8 (50)^**	10 (31)	3 (27)
No	14 (88)	8 (50)	22 (69)	8 (73)
GMFCS category
2	5 (31)	4 (25)	9 (28)	3 (27)
3	3 (19)	2 (13)	5 (16)	2 (18)
4	1 (6)	1 (6)	2 (6)	1 (9)
5	7 (44)	9 (56)	16 (50)	5 (46)
Diagnosis
Quadriplegia only	4 (25)	6 (38)	10 (31)	6 (55)
Diplegia only	4 (25)	6 (38)	10 (31)	3 (27)
Hemiplegia only	4 (25)	2 (13)	6 (19)	2 (18)
Athetoid CP only	3 (19)	1 (6)	4 (13)	0 (0)
CP nonspecific	1 (6)	1 (6)	2 (6)	0 (0)

Unless otherwise noted, values are the number (percentage) of children.

Office for National Statistics Classification.

Chi-square, 8.60; p, .035. The overall distribution of socioeconomic status differed between children who had received one or more complementary therapies and those who had not received any complementary therapies.

Chi-square, 5.24; p, .022.

CP, cerebral palsy; CT, complementary therapy; GMFCS, Gross Motor Function Classification System.

Half the children (n=16) had not received any CT, and the other half had received one or more types of therapy (Table 2). For the children who had not received any CT, parents of 6 of the 16 (38%) massaged their children as a pacifying and pain-relief strategy. For children who had received CT, the number of different types of therapy ranged from one (n=11; 69%) to four (n=1). Children from families of higher socioeconomic status (determined by using the Office for National Statistics classification) were more likely to have received one or more CTs (chi-square=8.60; p=.035). Children who had a history of seizures were less likely to have had CT than those who did not (chi-square=5.24; p=.022). No other demographic characteristics or medical variables differed between children who had received CT and those that had not (Table 1).

Table 2.

Use of Complementary Therapies

Variable	Data
Used 1 or more therapies
Yes	16 (50)
No	16 (50)
Number of therapies
0	16 (50)
1	11 (34)
2	3 (9)
3	1 (3)
4	1 (3)
Therapy type
Cranial osteopathy	11 (34)
Yoga	2 (6)
Conductive education	4 (13)
Homeopathy	1 (3)
Reflexology	1 (3)
Chiropractic	1 (3)
Oxygen therapy	1 (3)
Acupuncture	1 (3)
Chinese medicine	1 (3)
Massage	1 (3)

Values are the number (percentage) of participants.

Of the 16 children who had received CT, only 3 (19%) were receiving therapy at the time of the interviews. Two children participated in yoga, 1 of whom also received conductive education, and 1 child had regular massage sessions from a complementary therapist. Most of the other children had received therapy as infants or toddlers, but parents had stopped the sessions for a variety of practical reasons or because of the apparent lack of ongoing effectiveness.

Reasons for trying CT

Parents described a variety of reasons for trying CT, one of which was as a potential pain-relief strategy. Several described the pain their child experienced and their hopes that CT would relieve the pain and help their child relax. As one father whose child had tried cranial osteopathy said, “He would cry all his waking hours for days on end. When he was weeks old, that was a problem. Presumably because his head hurt, but no one has ever said that to us .… it was with one of those periods when we took him with cranial osteopathy, to see if that would help. I wanted to stop him crying. We figured that he was probably in some pain and I heard it gave pain relief” (45) (Note that numbers in parentheses represent study identifiers.) Others had more specific reasons for wanting the therapy, such as to help their child sit, walk, or talk. One mother talked about her child's experience with conductive education (which she considered to be a form of CT): “Him walking for one, yeah, definitely…I was hoping that the whole thing would incorporate speech and language as well as movement but it just mostly focused on movement rather than speech and so that was a bit of a downer” (163). In contrast, some parents did not have a specific goal but felt it was “something to try,” as the following quote illustrates: “I'm into trying, trying anything if it works then fine and if not well not, but I'm up to try anything that will maybe keep him calmer and use his muscles more” (90). Several parents described their need to try something, anything, to help their child, as a father explained: “We tried anything as at that point we did not know. I think that you also feel like you are doing something. You feel like you are doing something for your child” (60).

Knowledge about CT

Parents whose children had not received any CT reported a lack of information regarding the suitability or possible benefits of CT. One mother described how she had not considered CT for her child: “I didn't know that you could, really…I didn't…really think of reflexology or acupuncture for children as such “ (97), whereas another parent clearly felt that it was the responsibility of those providing care for her child to have informed her: “No one has ever said that these sorts of things would help [child], it has never been mentioned. You know, nothing has been mentioned” (60). Several parents were unsure about what individual CTs were or were confused about their role—for example, many thought that reflexology was something to do with gastric reflux (a common issue for children with CP). Some parents reported hearing about CT informally, via friends and other social contacts, parents of other children with CP, or through the media and “yellow pages,” rather than from health professionals, as illustrated by the following quote: “I did not hear about it in context with CP. I think I just heard it generally as it is quite fashionable for children” (151). However, other parents clearly felt that they should have been routinely given information about the availability of different therapies, again indicating that they thought the responsibility lay with health professionals, as shown by this quote: “Some of them I wasn't even offered, do you want your child to have that?…because if there are treatments available if they will help with their condition of course I want my son to have it” (146).

Concerns about CT

Parents who had not tried CT reported feeling unsure about whether CTs were safe and expressed anxiety about taking the child for a treatment that had not been recommended. As a mother said, “Sometimes you are a bit frightened to do things yourself in case…unless you know what you are doing you could be hurting the child” (60). Other parents described how they wanted professional advice before embarking on a particular type of CT, illustrated by the following quote: “We certainly have not tried acupuncture or anything else. No other remedies. I would not want to try herbalism or anything like that without some professional advice” (79). There was a strong sense of needing to do the right thing, as one mother explained, “I was not sure whether it was the right thing to be honest, yes, so I never tried it” (166), and anxiety about subjecting their child to something that would not help or could have detrimental implications for their child: “We didn't want to try anything that was invasive” (158).

Practical considerations

Parents of children who had received CT, as well as parents of children who had not experienced CT, had some practical concerns focused on time constraints and trying to fit therapy sessions in with all of their other commitments, as summed up by the following quote: “Trying to fit it in to a busy programme” (74). Another mother talked about the need to juggle other family members' commitments: “I think that if it fitted in with everyone else as well, if one of us wasn't working then we might dedicate the full time that it really needed but it was so intense. If [child] was our only child you probably would throw yourselves at it hook, line, and sinker” (158).

The cost and availability of CT were also an issue, particularly because many parents had paid for their child's treatment themselves: “It is very expensive and hard to find.…They don't do it in this borough or at his school, so that was it” (136). Another parent who had tried many different CTs described how she had paid for some sessions but had to make decisions about whether to continue: “After a trial of about 6 sessions I thought, I think I was going through some and financially I also had to keep weighing the pros and cons…It is an expensive business and you are doing it privately and in an ideal world you don't want to think about the money and healthcare.…I have to become a millionaire before I can start all these things again” (163).

Beliefs about the benefits of CT

For children who had received CT, there were differing views as to whether it had been beneficial. Some parents felt that the treatment had been extremely beneficial, not only for physical improvements but also as something that empowers the child. One mother described the “transforming” effect of her child's CT sessions: “It's been a miracle for A, an absolute miracle…[it] is all about turning your brain on saying I can do this and I will do it” (76). Other parents talked about the relaxing effects of the CTs; for example, one mother explained: “It relaxed her a lot…you could see quite a difference on the day and possibly for the day after” (158). In contrast, other parents did not feel that there had been any improvements in their child; as one parent succinctly said, “I did not see the results” (283). A father described waiting for improvements: “I think that it was quite hard as well, that, you know, you could not see any changes, and I think that you want to see them when you are putting that much effort in there” (158). Some parents described a lack of belief in the therapy once their child had started it, as illustrated by the following quote: “At that time I am not sure if I see the beneficial [Sic] in the therapy and myself personally I didn't seem to believe in the treatment, and so that is why I stopped it” (77). In contrast, others felt that they as parents should do more, as a mother explained: “We haven't tried very much and we believe that we should” (74). One parent described how although they were skeptical, they felt they should try CT in case it was effective: “We kind of had the philosophy, well if it is, like everything with [child], if it is not going to do any harm, and it could be helpful to him. If it is not going to hurt him and it could help him then we should try and then you know, it is something worth pursuing or looking into more so.” (159).

Discussion

This qualitative study of the use of and attitudes toward CT among parents of children with CP identified that children of half of the parents interviewed had received one or more therapies. This is similar to other reported findings.^7,8 However, only a minority who had previous exposure to CT were currently receiving CT, and in the majority of cases children had had a few sessions only during infancy/early childhood. Such findings indicate the importance of eliciting patterns and timings of CT, rather than simply looking at the overall numbers who have ever received these therapies. A further issue that can make comparison with other studies difficult is the definition of included CTs. Many children in this study had had botulinum toxin treatment or received hydrotherapy at school, but neither of these was included because botulinum toxin is more frequently included as standard medical care for children with CP²¹ and hydrotherapy may be part of the physiotherapy regimen.²² Massage therapy was also difficult to define: Several children had massage administered by family members or in the school environment, but again this was not defined as receiving CT from a practitioner. Other studies have used a wider range of therapies or have included therapies not provided by a CAM practitioner.

In contrast to other studies,^8
–10 mean age did not differ between children who had received CT and those who did not. However, our sample was small (because this was essentially a qualitative evaluation) and the age range was relatively narrow. This study found that families whose children had had or were having CT had higher socioeconomic status than children who had not had CT. This may reflect the fact that families tended to pay for their child's therapy out of their own pocket. The cost of CT also emerged as a concern for parents and probably precluded some children from receiving CT. In a recent study, more than half of children with CP who were receiving massage therapy had the therapy provided by family members.²³ In this latter study, lower maternal income was associated with relatives providing the massage rather than professionals. Previous studies have also found that higher levels of family income and parental education are associated with greater use of CAM.²⁴ Future studies should explore the role of socioeconomic status and cost of CT as potentially influencing variables in CT uptake. We further found that children with seizures were less likely to have had CT, although it is not clear why this may be. One possible explanation is that parents were concerned about the safety and/or the effectiveness of CT if their child had previously had seizures and therefore chose not to access CT; however, this warrants further investigation.

Through exploring parental perceptions about CT, it was evident that many parents felt poorly informed about different therapies and that there were many practical constraints for accessing therapy. Cranial osteopathy was the CT most frequently used in the past but families had not continued the sessions because of lack of effectiveness or practical limitations. The suggested lack of effectiveness of previous experiences supports the findings of the overall (current) trial,¹⁷ but it is interesting that despite their previous experiences families had still enrolled for the trial and some were willing to embark on further cranial osteopathy. Such an attitude corroborates the expressed wish and willingness of many parents to try something that may benefit their child. It also suggests that when parents are confident that a treatment is supported or provided by medical or professionally accredited staff, is safe, and is funded, they want to take the opportunity for their child to receive CT. Data from the trial indicated that 18 of the 43 families (42%) in the control group took up the free cranial osteopathy treatment. One possible explanation for the relatively low take-up rate is that logistic reasons may have made it difficult for some families to have the treatment, further highlighting the importance of practical support for families to enable them to access services for their child.

The findings of this study should be considered in light of several limitations. First, the participants in this study were enrolled in a randomized controlled trial of cranial osteopathy that did not include children with mild CP; therefore, it may not be representative of the general population of children with CP. However, the refusal rate for participation in the trial was very low, suggesting that the results are likely to be generalizable to parents of children with moderate or severe CP. Second, children who had received cranial osteopathy within the previous 12 months were excluded, and the perceptions and experiences of such children and their families may have been different from those who were recruited to the trial. Third, non–English-speaking participants were excluded. Finally, the parents of one third of the children who were in the control group chose not to participate in the interview, although the children of the nonrespondents did not differ in terms of demographic or medical variables from those who did participate.

This study indicates that parents of children with CP are motivated to try CT that will help their children but that they need information, guidance, and practical support to facilitate the use of CTs. Although cranial osteopathy has been the most widely accessed therapy, its effectiveness is not clear. It may be that other therapies, such as yoga and conductive education, offer a greater chance for physical and psychological benefit to children with CP. Further evaluation of the safety and effectiveness of different forms of CT is required, as has recently been highlighted,²⁵ and such evidence needs to be communicated to families. This study did not examine parental use of CTs, which has been previously associated with increased use in children,^7,26 nor did it explore parental decision-making processes.²⁷ However, as CT is increasingly being used in the holistic treatment of children with CP, it is important to identify factors (medical, social, and behavioral) that are predictive of optimal outcomes.

Footnotes

Acknowledgments

We thank the parents for giving up their time to participate in this study.

The study was funded by Cerebra. The funders had no part in the design of the study; the collection, analysis, and interpretation of the data; the writing of the report; or the decision to submit the article for publication.

Author Disclosure Statement

No competing financial interests exist.

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