Family Perspectives on Pediatric Complementary and Integrative Medicine Practices in Pediatric Hematology and Oncology

Abstract

Background:

Families of children with cancer and nonmalignant blood disorders frequently explore complementary medicine (CM). Despite growing evidence supporting CM for pediatric populations, physician communication about its use remains limited. This study evaluates caregiver awareness, interest, and use of CM among pediatric hematology/oncology patients.

Methods:

A cross-sectional survey was conducted among caregivers at the University of North Carolina Pediatric Hematology/Oncology Clinic (May–September 2024). Eligible participants spoke English or Spanish and had attended at least one clinic visit. The survey assessed awareness and use of CM, including nutrition, supplements, mind-body practices (e.g., prayer, acupuncture, and yoga), and whole medical systems (e.g., traditional Chinese and Ayurvedic medicines)—as well as costs, motivations, and barriers.

Results:

A total of 150 caregivers completed the survey. Only 30% of respondents were familiar with CM terminology, yet 58% reported using at least one CM form. Dietary modifications were most common (47%), followed by mind-body practices (20%). Caregivers of cancer patients prioritized CM to reduce treatment side effects, whereas caregivers for those of patients with nonmalignant hematology conditions prioritized long-term quality-of-life. Barriers included lack of awareness (61%) and cost (15%). Only 17% had discussed CM or PIM (pediatric integrative medicine) with clinicians, and in most cases (60%), caregivers initiated the conversation.

Conclusions:

Findings highlight significant gaps in awareness, access, and clinician-family communication regarding pediatric CM. Despite limitations such as single-site design and modest sample size, results underscore the need for caregiver education and accessible services to better support pediatric patients and families.

1 |. Introduction

The management of pediatric hematology/oncology patients often involves complex treatment regimens with frequent medical procedures and can be associated with significant physical and emotional distress [1, 2]. Although conventional treatments remain the cornerstone of care, many families seek additional approaches to enhance their child’s quality of life and alleviate treatment-related side effects [3, 4]. These practices are collectively referred to as complementary (which implies that a nonconventional approach is being used “in addition to” conventional care), alternative (which implies that a nonconventional approach is being used “instead of” conventional care), and/or integrative medicine (which implies that a nonconventional approach is being used “in collaboration with” conventional care) [5]. Integrative medicine, which combines standard medical treatments with complementary medicine (CM), is increasingly being explored to enhance patient outcomes, relieve symptoms, and improve the overall quality of life for pediatric patients and their families [6].

Use of CM among pediatric oncology patients and their caregivers has been documented across diverse settings in the last decades. A systematic review conducted in 2010 by Bishop et al. reported a prevalence of CM use that ranged from 6% to 91%, with most studies reporting at least one-third of families using these forms of therapy [7]. Similarly, European surveys found that 31%–69% of patients had used CM during their treatment, with the most common methods used being homeopathy, nutritional supplements, and mind-body approaches [8–10]. Studies found that parents frequently turn to CM to improve quality of life, reduce treatment side effects, or support their child’s overall well-being [9, 10]. Despite there being a high prevalence of CM use among patients and their caregivers, prior evidence consistently shows limited disclosure to clinicians and low rates of clinicians inquiring about their use [8, 11].

In the last decade, there has been a surge in research evaluating the efficacy and feasibility of complementary and integrative medicine within the pediatric hematology/oncology setting. For example, yoga and mindfulness-based interventions have shown significant reductions in pain scores associated with sickle cell pain crises and are feasible to implement clinically [2, 12–15]. Qigong and Tai Chi can improve physical function and reduce fatigue in cancer patients, thereby enhancing overall quality of life [16–18]. Acupressure, massage, and aromatherapy have also garnered attention as effective treatments for chemo-induced nausea and vomiting in children [1, 19]. Acupuncture/Acupressure is promising in managing pain and minimizing opioid use in patients with sickle cell disease [20, 21]. Music therapy reduced anxiety and improved mood in children receiving cancer treatment but also notably enhanced emotional resilience in caregivers, helping them overcome challenging times [22–24]. Studies have also shown specific interventions, such as immersive virtual reality, to be effective in decreasing pain, fear, and anxiety related to blood draws in children ages 5–12 [25].

As more studies validate the positive impacts of CM on symptom reduction, clinicians are increasingly incorporating CM into standard-of-care protocols. The updated guidelines published in May 2024 by the American Society of Clinical Oncology and the Society for Integrative Oncology recommended the inclusion of mindfulness-based interventions for all cancer patients, both during and after treatment, as part of standard care [26]. Integrating these therapies into standard care requires a thorough understanding of patient and family perspectives regarding their use and potential benefits, so clinicians can best serve them.

Families of pediatric hematology and oncology patients are increasingly seeking pediatric integrative medicine (PIM) therapies to support their child’s overall well-being and improve treatment [9, 10]. To this end, this study aims to assess the interest in and uses of CM generally among the families of patients treated in our institution and explores their specific desires and preferences regarding complementary and integrative medicine services for pediatric patients. We seek to inform the development of an evidence-based integrative medicine clinic tailored to the unique needs of our pediatric hematology and oncology population.

2 |. Methods

We designed a survey instrument by adapting two previously published surveys on CM use in pediatric oncology patients [27, 28]. We adapted the survey to include the terminology of complementary and integrative medicine, terminology used across literature and in the clinical field, as well as gave a brief explanation of what these terms encompass. We included questions to evaluate the use of various CM approaches, including nutrition and dietary supplements, mind-body practices (e.g., prayer, acupuncture, and yoga), and whole medical systems (e.g., traditional Chinese and Ayurvedic medicines), the annual cost of these interventions, and perceptions of their potential benefits. The survey was based on a survey initially validated by Richardson et al. and adapted by Luo and colleagues to assess CM use at a comprehensive cancer center [28, 29]. Pediatric survey questions adapted from Sanchez and colleagues were incorporated into our finalized survey adaptation [27]. Demographic information, including the patient’s age, ethnicity, race, language preference, the patient’s diagnosis, and their treatment status, was also collected (Table 1).

TABLE 1.

Demographics and diagnoses.

Demographic characteristics of patients and caregivers	N (%) N = 150
Gendera
Male	90 (60)
Female	59 (39)
Age at diagnosisa
<1-year-old	38 (26)
1–5 years	50 (34)
6–10 years	21 (14)
11–15 years	26 (18)
16–20 years	12 (8)
Ethnicitya
Hispanic	34 (23)
Non-Hispanic	114 (77)
Racea
Caucasian	76 (52)
Black or African American	31 (21)
Otherb	38 (26)
Household income
<$25,000	16 (11)
$25,000-$49,999	31 (21)
$50,000-$74,999	21 (14)
$75,000-$99,999	20 (13)
>$100,000	30 (20)
Prefer not to say	32 (21)
Caregivers’ education
Less than college diploma	79 (55)
College diploma or greater	64 (45)
Diagnosisa
Nonmalignant hematological conditionc	53 (37)
Cancer	91 (63)
Time in cancer treatmenta,d
Currently receiving treatment	66 (72)
Short-term follow-up (<2 years off therapy)	7 (8)
Long-term follow-up (>2 years off therapy)	5 (5)
Receiving treatment for relapse	12 (13)

^aCharacteristics pertain to the patients.

^bOther included American Indian or Alaska Native (n = 1), Asian (n = 6), multi-racial (n = 18), and non-Caucasian Hispanic (n = 10). The remainder of the respondents chose not to disclose.

^cIncludes sickle cell disease, hemophilia, and other noncancerous hematological conditions.

^dPercentages represent the percent of those with cancer (n = 91).

Missing data are due to question left blank by respondent.

The survey was offered to a convenience sample of families of pediatric patients receiving care at the University of North Carolina Pediatric Hematology/Oncology Clinic. Families presenting to the Pediatric Hematology/Oncology clinic for outpatient appointments were approached by study team members during clinic visits that occurred between 5/29/2024 and 10/14/2024. Participants were required to be caregivers of patients treated for cancer or a chronic hematologic condition. They also had to have attended the clinic previously, at least once. Participants were required to be proficient in either English or Spanish, as the survey was only available in those languages. To ensure participants clearly understood the terminology used throughout the survey, complementary and integrative medicine were defined using examples. We also provided an introductory paragraph explaining the purpose of the survey and defining terms: “It will help us learn what you and your family understand about PIM and your interest in getting more information. Integrative Medicine is also commonly referred to as complementary or holistic medicine. PIM combines your current child’s current cancer treatment with other services, but it does not replace the therapy your doctor has prescribed to treat your child’s illness. Integrative Medicine may include nutrition/supplements, acupuncture, massage therapy, etc.”

The study proposal was approved by the Institutional Review Board at the University of North Carolina at Chapel Hill (#23–3213). Data were collected using the Research Electronic Data Capture (REDCap) system hosted at the University of North Carolina at Chapel Hill [30, 31]. Surveys were administered on iPads provided to families in the clinic’s waiting room. This approach facilitated real-time data collection while minimizing disruption to families’ clinic visits. Caregivers were invited to participate voluntarily, and verbal informed consent was obtained before survey distribution.

The characteristics of survey responses were reported descriptively with frequencies and percentages. Fisher’s exact tests were utilized to explore the associations between demographic characteristics and the use of CM/PIM.

3 |. Results

3.1 |. Study Population

One hundred and fifty caregivers completed the survey. Overall, 63% cared for a child with cancer, and 37% for a child with a chronic hematologic condition such as sickle cell (11%), hemophilia (3%), or other noncancerous blood disorder (21%). Overall, 72% of patients with a cancer diagnosis were undergoing treatment at the time of the survey, 8% were being seen for short-term follow-up (>2 years off therapy), and 5% were in long-term follow-up (>2 years off therapy) (Table 1).

3.2 |. Patient Demographics

Fifty-two percent of survey respondents reported being Caucasian/White, 21% African American or Black, and 26% were in the “other” category, which included American Indian or Alaska Native (n = 1), Asian (n = 6), multi-racial (n = 18), and non-Caucasian Hispanic (n = 10). The remainder of the respondents chose not to disclose. When asked about ethnicity, 23% identified as Hispanic or Latino. Annual income varied from <$25,000 to >$100,000. Twenty-one percent of all respondents preferred not to disclose their household income. The highest educational level achieved by the health care decision-makers in the family varied widely; 55% had less than a college degree, whereas 45% had at least a college diploma (Table 1).

3.3 |. Previous Awareness of Complementary or Integrative Medicine for Pediatric Patients

Of the 150 participants, 30% reported they had heard of CM or PIM, but only 17% had discussed it with a clinician, and 60% of those discussions were initiated by the parent. Of those who did not discuss CM or PIM, 76% were interested in their clinician discussing it with them, and 12% were unsure (Figure 1).

FIGURE 1.

Discrepancies in ese, awareness, and clinical communication.

Although the majority of respondents (74%) said they would feel comfortable talking to their clinician about CM or PIM, the primary reasons for never having the discussion were because the clinician never asked (63%), the clinician would discourage or disapprove (8%), they did not feel clinician would have additional knowledge (7%), or they did not feel it was important for the clinician to know (5%). The most common source of information on CM or PIM for families was the internet (19%), followed by their oncology clinician (19%), friends/family (13%), and social media (11%) (Table 2).

TABLE 2.

Sources of complementary medicine (CM) information.

Sources	Total N (%) (N = 150)	Classic hematology N (%) (N = 53)	Cancer N (%) (N = 91)
Internet search	29 (19)	9 (17)	19 (21)
Pediatric hematology/Oncology clinician	28 (19)	11 (21)	17 (19)
Friends or family members	20 (13)	5 (9)	15 (17)
Primary care clinician	16 (11)	7 (13)	8 (9)
Social media	16 (11)	4 (8)	11 (12)
Other patients/families	13 (9)	2 (4)	11 (12)
Books	9 (6)	4 (8)	4 (4)
Other	9 (6)	3 (6)	6 (7)
TV/Magazine/Newspaper	7 (5)	1 (2)	5 (6)
CM clinician, herbalist, chiropractor, and homeopathic clinician	5 (3)	4 (8)	1 (1)
Staff at student health store	2 (1)	1 (2)	1 (1)
Pharmacist	1 (1)	1 (2)	0 (0)

Note: Respondents were asked to checkall that apply; percentages represent the proportion of people out of 150 that selected each source. Missing data are due to questions left blank by respondent.

3.4 |. Patient Use of CM

Of the 105 respondents (70%) who said they had never heard of CM or PIM as concepts, 52% reported nonetheless using one or more forms of CM when asked specifically by using examples (Figures 1 and 2).

FIGURE 2.

Use of integrative or complementary herapies.

Use of dietary modifications was most popular overall, with 47% of respondents claiming they made dietary adjustments that included switching to a whole foods diet (34%), taking herbal (24%) or mineral (16%) supplements, eating primarily plant-based (6%), Mediterranean (4%), or ketogenic (1%) diet. Overall, 39% of respondents who selected that they made dietary adjustments shared “other” supplements/dietary modifications that were not listed, including other vitamin supplementation, green smoothies, avoidance of sugar and GMOs, increasing water intake, increasing vegetable intake, following a diabetic diet, and incorporating bean juice, beets, probiotics, creatine, or polyamines into the diet (Table 3).

TABLE 3.

Comparing use of complementary medicine (CM) therapies by patients with cancer vs. other hematological conditions. This study was approved by the Institutional Review Board of the University of North Carolina at Chapel Hill. All of the respondents gave verbal consent to participate in the study.

PIM therapies useda	Total N (%) (N = 150)	Classic hematology N (%) (N = 53)	Cancer N (%) (N = 91)
Mind bodyb
Total	30 (20)	11 (21)	19 (21)
Prayer	17 (11)	7 (13)	10 (11)
Breathing exercises	16 (11)	5 (9)	11 (12)
Yoga	11 (7)	4 (8)	7 (8)
Music therapy	10 (7)	3 (6)	7 (8)
Meditation/Mindfulness	9 (6)	3 (6)	6 (7)
Journaling	8 (5)	4 (8)	4 (4)
Art therapy	8 (5)	2 (4)	6 (7)
Mind-body medicine	4 (3)	2 (4)	2 (2)
Reflexology	4 (3)	0 (0)	4 (4)
Spiritual healing	3 (2)	2 (4)	1 (1)
Aromatherapy	3 (2)	0 (0)	3 (3)
Energy medicine	2 (1)	0 (0)	2 (2)
Therapeutic touch	2 (1)	1 (2)	1 (1)
Guided imagery/visualization	2 (1)	1 (2)	1 (1)
Light therapy	1 (1)	1 (2)	0 (0)
Acupuncture	1 (1)	0 (0)	1 (1)
Dietary interventions
Total	71 (47)	28 (53)	43 (47)
Other supplementsc	28 (19)	10 (19)	18 (20)
Whole foods diet	24 (16)	11 (21)	13 (14)
Herbals	17 (11)	5 (9)	12 (13)
Minerals	11 (7)	4 (8)	7 (8)
Plant-based diet	4 (3)	1 (2)	3 (3)
Mediterranean diet	3 (2)	1 (2)	2 (2)
Ketogenic diet	1 (1)	1 (2)	0 (0)
Whole health systemsd
Total	4 (3)	0 (0)	4 (4)
Traditional Chinese medicine	1 (1)	0 (0)	1 (1)
Homeopathic medicine	1 (1)	0 (0)	1 (1)
Other	2 (1)	0 (0)	2 (2)

^aCheck all that apply questions where each person could have selected more than one option.

^bMind-body strategies asked about, but 0 selected: Tai Chi, Qigong, progressive muscle relaxation, hypnosis, biofeedback, and, magnet therapy.

^cArseicum and phosphorus, balanced diet with vitamins, beets + bean juice, diet for diabetes, balanced diet with lots of veggies, teas, folic acid, green smoothies, sugar avoidance, artificial color avoidance, GMO avoidance, lots of water, heavy metal detox, polyamine avoidance, soups and stews, probiotics, natural ingredients, creatine, vitamins, Vitamin D, Pediasure, and multivitamins (5).

^dWhole body systems asked about, but 0 selected: Ayurvedic medicine, naturopathic medicine, Unani medicine, and Curanderismo.

Missing data are due to questions left blank by respondent.

Overall, 20% of caregivers used some form of mind-body therapy as a complement to their child’s treatment. The most utilized mind-body therapies were prayer (11%) and relaxation breathing exercises (11%), followed by music therapy (7%), yoga (7%), mindfulness (6%), journaling (5%), and art therapy (5%). No one reported using hypnosis, biofeedback, progressive muscle relaxation, or Tai Chi/Qigong. Four families reported using whole medical systems strategies through the guidance of a homeopathic doctor and/or traditional Chinese medicine.

Only 37 families responded to a question about the amount spent on CM, 75% of which reported spending <$99 or $100–$499, with 24% spending more than $499. Despite 87 respondents previously having listed multiple forms of CM, 107 answered that they had never used any CM when later asked about attributable cost, a number similar to those who responded never having heard of CM or PIM (105).

3.5 |. Trends Across Demographic Groups

We compared therapy use across different patient demographics, including the child’s gender, age at diagnosis, ethnicity (Hispanic vs. non-Hispanic), race, household annual income, and the highest level of education received by the healthcare decision-maker (Figure 3). Females were slightly more likely to use CM than males (63% vs. 56%) (Figure 3A). Use of CM was highest for patients diagnosed within the age range of 11–15 years (77%) and 6–10 years (62%) but was still used by at least 50% of patients in all other age categories (Figure 3F). There was a slightly higher prevalence of CM use in Hispanics versus non-Hispanics (62% vs. 56%) (Figure 3B) and in Caucasians compared to Blacks or African Americans (61% vs. 55%) (Figure 3D). When comparing specific therapies, a smaller percentage of Black or African American patients reported using mind-body practices compared to Caucasians and other races (13% vs. 22%, 21%), and a greater percentage of Hispanics used nutrition interventions when compared to non-Hispanics (59% vs. 44%). There was no notable difference in complementary therapy use when comparing parent education level, with 60% and 58%, respectively, for those who received less than a college diploma and those who received a college diploma or greater (Figure 3E). Income level also did not appear to influence the use of CM, with 53%–63% use of CM across all income levels (Figure 3C).

FIGURE 3.

Comparison of complementary medicine use vs. non-use across different demographics. Dark grey, percentage of specific demographic that reported no complementary medicine use; light grey, percentage of specific demographic that reported using at least one complementary therapy. (A) gender, (B) ethnicity, (C) household income, (D) race, (E) highest level of education in the medical decision-maker, (F) patient’s age at diagnosis.

3.6 |. Barriers to Use and Reasons for Interest in CM

The primary barrier to CM use was not being aware of it (61%) (Figure 4). Other common reasons for not using included concern about interactions with the patient’s current therapy (17%) and concern about cost (15%). Overall, there was a low concern about safety or side effects (5%), and a few people were simply not interested (8%).

FIGURE 4.

Barriers to complementary medicine use.

When respondents were asked why they might use PIM for their child, the most common responses were to boost immunity (49%) and improve quality of life (48%). Other reasons included the following: to reduce treatment side effects (37%), prevent recurrence/relapse of disease (33%), to cure disease (29%), preference for natural therapies (28%), to relieve symptoms (27%), to assist with other treatments (25%), to relieve pain (23%), or to have a greater personal involvement with care (16%) (Figure 5).

FIGURE 5.

Comparing reasons for iInterest in complementary medicine in cancer patients vs patient with classic hematological conditions.

There were notable associations between the child’s diagnosis and reasons for CM use, with parents of cancer patients more likely to report wanting to lessen side effects of treatment compared to patients with non-cancer diagnoses (46% vs. 25%) as well as wanting to assist with other treatments (32% vs. 13%) (Figure 5).

4 |. Discussion

This study sheds light on the trends and perspectives of families in pediatric hematology/oncology regarding the use of and communication surrounding PIM. Notably, over half of respondents reported using at least one type of CM, reflecting high utilization rates consistent with prior studies. However, awareness remains limited, with 70% stating they had never heard of the term “PIM” before the survey. This gap underscores a disconnect between available CM and the information reaching patients and their families.

Among CM, nutritional modifications emerged as the most commonly used, echoing findings from previous studies by Raber et al. and Bélanger et al. that have similarly highlighted dietary interventions as a cornerstone of family-driven PIM use, underscoring their accessibility and perceived benefits on general health [32–34]. In contrast, mind-body therapies, such as acupuncture, Tai Chi, or Qigong, were much less frequently used (20%), despite growing evidence supporting their effectiveness in managing pediatric cancer-related symptoms. For example, mindfulness and yoga have been shown to reduce anxiety and improve quality of life [13, 14]. This discrepancy between interest, efficacy, and utilization highlights a lack of awareness and access to accurate information about these therapies.

Lack of information was the most commonly reported barrier to CM use, aligning with earlier findings by Stub et al., who identified that many parents are not exposed to reliable sources of complementary therapy information [35]. Families in our study often turned to the internet and social networks for guidance, a trend also reported in other literature [36–38]. Encouragingly, over half of respondents expressed interest in discussing PIM with their clinician, yet only 17% had done so, reinforcing a well-documented gap in clinician-initiated conversations [11, 35, 39, 40]. These findings support the growing call for better education and training for clinicians to discuss evidence-based CM with families [40].

Prior research by the Children’s Hospital of Philadelphia noted increased PIM use during cancer relapse, and our findings suggested spending most commonly ranging from <$99 to $499 across all respondents [41]. These findings suggest that families are willing to incur costs in pursuit of hope and symptom relief. However, cost was a concern for about 15% of respondents, raising important questions about equitable access to integrative care. The variability in spending further highlights the need for structured support systems to ensure all families can access safe, evidence-informed interventions without inducing financial burden.

The results of this study carry important implications for the integration of CM in pediatric hematology/oncology care. First, the willingness of families to discuss CM with their clinicians suggests that incorporating these conversations into routine care may help to close the current information gap. Clinicians should be equipped with evidence-based guidelines, such as those from the Society for Integrative Oncology [26], to facilitate safe and effective recommendations. Second, disparities in cost burden must be addressed through subsidized access or community-based partnerships. Finally, the motivations behind CM use—ranging from symptom relief during cancer treatment to managing long-term quality of life in chronic hematologic conditions—suggest the value of an individualized, diagnosis-specific integrative approach. Pediatric cancer patients may benefit from targeted interventions such as aromatherapy or acupressure for symptom relief from medication side effects [1, 3, 4, 19], whereas families of children with chronic hematologic conditions may prioritize therapies aimed at improving long-term quality of life or anxiety related to frequent procedures and blood draws [25, 42].

Despite these insights, the study has several limitations. The sample size was not powered to detect subgroup differences, limiting the ability to draw statistically reliable conclusions across demographics or diagnoses. The single-site nature of recruitment also restricts generalizability, as institutional culture likely influences patient-clinician communication. Furthermore, some participants declined to share race or income data, which may impact the representativeness of findings. Efforts to enhance inclusivity, including verbal assurances of confidentiality and the use of bilingual survey administrators, helped build trust but may not have fully eliminated response bias, particularly in families with low literacy who required assistance completing the survey. Despite limitations, this study provides helpful insight on the deficiencies within integrative medicine care in the field of pediatric hematology/oncology and builds onto the findings of other published studies.

Looking forward, there is an opportunity to establish dedicated integrative medicine services within pediatric hematology/oncology clinics. These programs could offer families access to safe, evidence-informed therapies while facilitating collaboration with care teams. Future studies should explore the long-term outcomes of CM use, especially the impact on symptom management, quality of life, and caregiver well-being. Additionally, studies should investigate cost-effective models for integrating PIM services into conventional care, ensuring accessibility for diverse patient populations.

Abbreviations:

CM

complementary medicine

PIM

pediatric integrative medicine