Objective. The objective of this study was to assess the frequency and type of complementary and alternative medicine (CAM) therapies used by families of children with special health care needs in southern Arizona, as well as the correlates of their use.
Methods. Families of 376 children who were receiving services in a regional facility that serves children with special health care needs and were residing in southern Arizona were surveyed regarding CAM use.
Results. Sixty-four percent of these families reported using CAM for their child. The most common CAM therapies were spiritual healing/prayer/blessings. Of the conditions that were evaluated as correctable, the use rate was 24% as compared with a 76% use rate for children with a nonrepairable condition. Use of CAM for the child was strongly related to the use of CAM in the past by the family member who responded to the survey. The reasons that parents most frequently chose for using CAM were advice from a medical practitioner and advice from a family member.
Conclusions. Use of CAM for children with special health care needs is common. Its frequency and type are significantly associated with the child’s condition and prognosis.
The use of complementary and alternative medical therapies (CAM) has been increasing, initiated by both patients and, more recently, by health care providers. This trend has been documented in adults as well as in children and adolescents in general pediatric practices.1–8 There have been a number of studies of CAM use in children with chronic disabilities, such as inflammatory bowel disease, juvenile rheumatoid arthritis, asthma, cystic fibrosis, and cancer,9–15 and a few have made this assessment in populations of children with special needs: attention deficit disorder16 and developmental disabilities.17–19 We did not find any that had assessed CAM use in children with special health care needs as defined by the Maternal and Child Health Bureau of the Department of Health and Human Services: “Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who (MCHB) also require health and related services of a type or amount beyond that required by children generally.”20,21
Children with special health care needs, either potentially curable or lifelong, have not been previously surveyed to ascertain their use of CAM. The purpose of this investigation, therefore, was to address this deficiency. We sought answers to the following questions:
To what extent do the parents of special needs children utilize CAM therapies for their children?
Are there associations between CAM use and the type of the child’s disability or its prognosis?
Which are the most frequently used CAM therapies used in this population?
Who most often advises the families of these children about CAM therapies?
Is there an association between parental use of CAM and the use of these therapies in their children?
This study was conducted over a 1-year period between May 1999 and May 2000 at the Children’s Clinic for Rehabilitative Services (CCRS) in Tucson, Arizona. Special health care needs determine enrollment eligibility at CCRS and include cerebral palsy, spina bifida, hydrocephalus, cleft lip and/or palate, scoliosis, neuromuscular diseases, congenital heart disease, sickle cell disease, and structural problems associated with some chromosomal abnormalities. Approximately 4300 children were enrolled at CCRS, approximately 3700 of whom were seen in the clinic during the course of the study.
Trained volunteers were available in most of the individual clinics that were scheduled during the 1-year period of the study. The trained volunteer asked the parent or caregiver who was accompanying the child to his or her clinic appointment whether he or she would voluntarily complete a 3-page questionnaire regarding the use of alternative or complementary medicine. The questionnaire was modified from the one used by Spigelblatt et al.2 It was distributed in either English or Spanish, and the volunteer was available to assist with the questionnaire if requested. The questionnaire included demographic information, including the child’s diagnosis, the ages of the child and parents, and the educational background of the parents. Ethnic affiliation was also collected and is discussed more extensively elsewhere. The CAM therapies listed were oral and topical herbs, megavitamins, massage, acupuncture, osteopathic manipulation, chiropractic manipulation, prayers/blessing/spiritual healing, self-hypnosis, special diets, homeopathy, and hippotherapy (physical therapy that uses the movement of the horse as a treatment tool), and a blank was left for “other.” Parents were asked who had recommended the CAM therapy and the effectiveness of any therapies tried. The form also asked whether the caregiver had any personal experience in using CAM therapies.
Data were entered into an ACCESS database and were checked by staff of the Biostatistics Unit in the Pediatric CAM Center at the University of Arizona. All analyses were conducted using the SPSS version 10.1.3 (SPSS, Inc, Chicago, IL). χ2 statistics were computed to test for associations.
The study had the approval of the Human Subjects’ Review Committee of the University of Arizona and of the Medical Executive Committee of CCRS.
Of the 460 families included in a convenience sample of the 4300 enrolled children, 376 (82%) responded by filling out the questionnaire. Thirteen respondents completed only the descriptive information; hence, these were not included in the analysis of the remaining 363 questionnaires. The reasons were not recorded for individuals who refused to complete the questionnaire. More than 75% of the questionnaires were completed by the child’s mother, and 12% were completed by the child’s father. Four percent were completed by other relatives and 6% by foster parents or other care providers.
Fifty-seven percent (206 of 363) of the children whose responder completed the survey were male. The children’s average age was 9, with a standard deviation of 5.9. The average age of the mothers was 36; the average age of the fathers was 39. The average years of schooling for the mothers was 12.5 and was 12.8 for the fathers. Fifty-two percent of the mothers identified themselves as Anglo/white, 40% as Hispanic, 3% as African American/black, 2% as Asian, and 1% as Native American. The ethnicity for the fathers was similar.
Because CCRS is a regional clinic that treats children with a variety of special health care needs, the conditions represented are diverse. However, children with cerebral palsy, spina bifida, cleft lip/palate, and circulatory problems accounted for >40% of the sample (Table 1).
Of the 363 respondents, 64% of the children had used at least 1 form of alternative medicine in their lifetime, and 48% had used CAM therapies within the past 6 months. The most frequently used alternative therapies in this survey were prayers/blessings/spiritual healing, followed by massage, oral herbs, and special diets. The least frequently used CAM therapies were acupuncture and self-hypnosis (Fig 1).
Use of alternative medicine by type of disability was examined (Table 2). Only a few disabilities and alternative medicines were included. Children with cerebral palsy and spina bifida were more likely to receive physical manipulations than children with cleft lip/cleft palate or sensory disorders (P < .001). All children were equally likely to receive prayers and spiritual blessings.
Respondents were asked to list the reason(s) they used alternative medicines for their children and could choose multiple reasons. Advice by a medical practitioner (37%) and family member (33%) were the most frequent reasons chosen. However, 22% indicated that they were willing to try CAM because their child had an illness that was not improving with more conventional therapies. Another 14% believed that they were not getting enough help with traditional medicine, 9% wanted more personalized attention, and 8% were afraid of the side effects of medical drugs.
Of the caregivers who responded to this questionnaire, 149 (43%) of 349 reported that they have used CAM therapies for their own needs at some time in the past (Table 3). It was observed that those who have used it for themselves more frequently also used them for their child (P < .01).
The conditions were grouped into 2 categories, correctable or noncorrectable, as assessed by 1 of the authors (B.D.). Cleft lip/palate and congenital heart problems were considered to be conditions that were repairable, whereas cerebral palsy, myelomeningocele, or intractable seizures were considered to be lifelong conditions, ie, noncorrectable (Table 4). Twenty-four percent of the families whose child had a condition that was believed to be correctable had used CAM at some time compared with 76% of children with a lifelong disability having used CAM therapies (P < .0001).
This study, for the first time, documents the extremely widespread use of CAM by children with special health care needs. Of the 363 children in this study, 64% were recipients of a least 1 of the listed CAM therapies and almost 50% had used CAM therapies within 6 months before completing the survey. The type of CAM therapies varied with the child’s condition, but in general this population of children with special health care needs used healing/blessings/prayers and massage more frequently than other CAM therapies. Not unexpected, CAM use was much more frequent in those with noncorrectable conditions. Referrals to CAM practitioners came mostly from family members and health care providers.
The finding in this report that 64% of the families had used CAM therapies for their children is higher than the 11% reported by Spigelblatt et al2 in 1994 or the 29% reported by Armishaw and Grant.22 However, the population surveyed and the rate of CAM use in this investigation are more comparable to studies in children with cancer (42%) and those of children with asthma (55%). Unfortunately, the list of therapies classified as CAM therapies are different, precluding direct comparisons.11,14
The current study found that the CAM therapies most frequently used were spiritual healing/blessing/prayers (40%), massage (38%), oral herbs (19%), and special diets (16.5%). However, the type of CAM therapies varied depending on the condition that the child had. The data on most frequently used CAM therapies in this study contrast with the study by Spigelblatt et al, which found the most common modalities of treatment in the population that they surveyed were chiropractic, homeopathic, naturopathic, and acupuncture, accounting for 84% of CAM use.21 The differences in type of CAM therapies may be explainable. Various studies reporting CAM use2–4, 6,11, 13,16 list different CAM therapies, resulting in different percentages of each type of therapy used. Moreover, the studies were done in different geographic locales, which may have different CAM therapies available. The ethnic backgrounds and religious beliefs of the respondents undoubtedly differed between the studies. For instance, Spigelblatt et al2 surveyed a French-speaking Canadian population, whereas the community in which the current study was performed is primarily white and Hispanic. The influence of ethnic group-related factors is presented elsewhere.
We recognize several limitations of this study. The sample size was small, and the term “spiritual healing/blessing/prayers” was too broad a category. The survey did not determine whether the ease of access to or cost of a particular treatment influenced its use. The survey instrument did not ascertain the parents’ opinion of whether they believed that their child’s condition was correctable or noncorrectable. The determination of this factor for the use of this study was based on the judgment of the physician, who is a primary care pediatrician for many children in this population. The perception of the parents might be different and possibly could have an even stronger association with the use of CAM.
Despite the frequent use of CAM therapies in the general and special populations and several surveys to determine the actual use, many unanswered questions remain. Are parents of children more likely to use CAM therapies when traditional therapies have failed? Should health care practitioners attempt to integrate CAM therapies with traditional therapies? If so, how? Should we wait for controlled studies before making such recommendations? Are particular CAM therapies used more often in some localities than in others? If so, how does cost or availability influence those decisions or who pays for the therapies? Who offers these therapies, and what is their training? Which are equivalent to “snake oil” and which are legitimate? How can we best advise our patients about the use of the multitude of complementary and alternative therapies?
Parents of children with special health care needs use CAM at moderately high rates.
Use of CAM is related to the child’s condition and to its evaluation by a pediatrician as repairable or not.
The most commonly used therapies reported in this survey were prayers/blessings/spiritual healing and massage.
Advice about CAM therapies comes most frequently from health care providers and family members.
CAM therapies are more likely to be used for the child when the parent has previously used CAM therapies.
This research was supported in part by the National Institutes of Health Grant 5 P50 AT00008.
We gratefully acknowledge the technical assistance of Jennifer Andrews in preparation of the manuscript and Kathleen Pettit in data entry and management.
- ↵Spigelblatt LS, Laine-Ammara G, Pless IB, Guyver A. The use of alternative medicine by children. Pediatrics.1994;94 :811– 814
- ↵Simpson N, Pearce A, Finlay F, Lenton S. The use of complementary medicine in pediatric outpatient clinics. Ambul Child Health.1998;3 :351– 356
- Wilson K, Klein J. Adolescents’ use of complementary and alternative medicine. Pediatr Res.2000;47 :13A
- ↵Ottolini M, Hamburger E, Loprieato J, et al. Complementary and alternative medicine use among children in the Washington, DC area. Ambul Pediatr.2001;2 :122– 125
- Southwood TR, Malleson PN, Roberts-Thompson PJ, Mahy M. Unconventional therapies used for patients with juvenile arthritis. Pediatrics.1990;85 :150– 154
- ↵Andrews L, Lokuge S, Sawyer M, Lillywhite L, Kennedy D, Martin J. The use of alternative therapies by children with asthma: a brief report. J Pediatr Child Health.1998;34 :131– 134
- ↵Fernandez CV, Stutzer CA, Macwilliam L, Fryer C. Alternative and complementary therapy use in pediatric oncology patients in British Columbia: prevalence and reasons for use and nonuse. J Clin Oncol.1998;16 :1279– 1286
- ↵Stubberfield TG, Wray JA, Parry TS. Utilization of alternative therapies in attention-deficit hyperactivity disorder. J Pediatr Child Health.1999;35 :450– 453
- ↵American Academy of Pediatrics Committee on Children With Disabilities. Counseling families who choose complementary and alternative medicine for their child with chronic illness or disability. Pediatrics.2001;103 :598– 601
- ↵McPherson M, Arango P, Fox H, et al. A new definition of children with special health care needs. Pediatrics.1998;102 :137– 140
- ↵Armishaw J, Grant CC. Use of complementary treatment by those hospitalized with acute illness. Arch Dis Child.1999;81 :133– 137
- Copyright © 2003 by the American Academy of Pediatrics