HCT has resulted in improved survival rates among children with certain cancers, immune deficiency syndromes, or bone marrow failure, but it can be an agonizing ordeal for patients and their families. Indeed, in 1998 bone marrow transplantation was described as “the most devastating treatment that the human body could be subjected to” [25
]. Medical advances in intervening years have resulted in a less punishing regimen, but transplantation still remains arduous and disruptive of the lives of patients and their caregivers. This study contributes to a growing body of research suggesting that massage can help alleviate the distress associated with HCT among both patients and their family caregivers. The qualitative methods employed by this study reveal outcomes that were undetected—and undetectable—by the broader study's quantitative design, including several that have not yet been reported in the literature. New findings include reported benefits for patients in promoting sleep and providing symptom relief; benefits for parents in an increased sense of competence and respite from caregiving; and increased closeness between parent and child and a demonstrated willingness by parents to perform massage on their child
According to parent caregivers, massage provided varying degrees of relief from pain, nausea, and other symptoms associated with HCT for most, but not all, participants. Nearly all parents reported that massage sessions facilitated a general state of comfort, relaxation, and pleasure for their child. These findings are consistent with a study that reported reduced pain and increased relaxation among pediatric cancer patients who received massage [6
], and with the results of a study suggesting that massage for cancer patients promotes positive feelings, relaxation, and a sense of being special and cared for [26
]. Whether these benefits are sustained over time is an important question for future research, given the long-term suffering among survivors of childhood cancer and family caregivers described in numerous studies [27
Massage helped children fall asleep. This finding is notable because HCT patients often find sleep elusive in the midst of chronic pain, nausea, and discomfort, yet sleep is rarely mentioned in the literature on massage and symptom management. Moreover, the promotion of comfort and sleep–states not easily reduced to dualistic conceptions of mind or body–suggest that the positive effects of massage are not physical or
affective, but rather both simultaneously. This result is in line with previous research reporting that massage alleviates physical symptoms while also addressing the “existential suffering” associated with cancer and cancer treatments and improving patients' “quality of life” [20
It should not be assumed, however, that massage is relaxing and pleasurable for all patients at all times. As demonstrated by our results, patients' request for, and response to, massage varied widely throughout the different stages of HCT, with some patients declining massage during periods of acute pain and nausea, and others requesting massage at precisely these times. Massage enabled children undergoing HCT to become coagents in the therapeutic process, and most children embraced this agency without reserve—electing massage only when it suited them. While most children appeared to appreciate parent massage, one child felt unable to decline her father's massages when she did not want them. Individual patients' needs, and the specific ways in which family dynamics mediate these needs, should be carefully determined and addressed in any pediatric massage intervention so as to avoid coercion and the perception among patients that massage is obligatory.
This study suggests that it is important to adapt a semistandardized massage protocol to the immediate, and always mutable, sensations and perceptions of individual patients; when it offers respite from long periods of tedium and inactivity; and when it does not interfere with treatment schedules and hospital routines. This is not to suggest that a carefully constructed protocol with clear instructions on acupressure and massage techniques for typical HCT-related symptoms is not important. However, a massage protocol that does not allow for flexibility within a semistandardized frame runs counter to the study's findings and may undermine some of massage's reported benefits.
Parents in this study were, for the most part, amenable to learning massage techniques that they could perform for their child, and the resulting interactions tended to have a positive effect on parent-child relations and to mitigate parents' and patients' suffering. These findings are in alignment with a nascent body of research suggesting that learning to perform massage for a family member can alleviate caregivers' anxiety and feelings of helplessness [16
], and that caregiver-provided massage for chronically ill family members increases a sense of intimacy and connection between the provider and recipient of massage [19
]. More broadly, these results offer support for an understanding of disease and healing as social and material processes that extend beyond the individual, physical body [34
Moreover, providing parents with a means of actively participating in their child's treatment and recuperation—and children with a sense of control over their bodies—may represent a shift in what one of the study's massage practitioners described as a hospital culture in which “the professionals are taking care of the children and the parents try not to get in the way.” Parents felt comforted and strengthened when they were able to alleviate their child's suffering through massage. What are the broader implications, then, of parents playing a more active role in supportive care? Future research on massage and its increasing inclusion in biomedical treatment regimes could help elucidate these processes.
The success of parent-provided massage was dependent not only on parents' desire to help their child, but on the nature of the interaction between patient, parent, and massage practitioner, and on the development of trust and recognition within this triad. Massage is an inherently social practice, and for most of the children participating in the study, who was touching them was as important as which massage techniques were used. For example, in addition to the two teenage boys who decided not to enroll in the study, some older children, particularly boys, declined massage from their parent and/or from a massage practitioner (who were all women). These children's reluctance emerged postintervention in conversations between researchers and massage practitioners, rather than in interviews with participants, so the causes have not been explored in depth. In a study on massage for children with cancer, Post-White et al. reported no gender differences in response to massage, but 8 boys (over 30 percent of enrolled participants) failed to complete the study [6
]. It is clear that more research is needed to examine how factors such as the child's age, sex, and ethnicity mediate the perception and experience of massage.
The limitations of this investigation are primarily related to it being a small pilot study without data from direct interviews with patients. There are also limitations in the study's data collection methods. First, conducting interviews by telephone limited the interviewer's ability to establish rapport with participants. In addition, scheduling the interviews after parents and children returned home from the hospital meant that participants' perspectives were restricted to recall. Future research would be enriched by a series of in-depth, in-person interviews with both caregivers and patients over the course of treatment.
While parent reports indicate that massage may offer some short-term symptom relief, and that teaching massage to a parent may increase her or his sense of self-efficacy in managing a child's symptoms, longer-term benefits for both symptom relief and parent-child relationships were beyond the scope of this study. Questions that could be explored in more detail in follow-up studies include whether massage mitigates long-term, posttreatment suffering associated with HCT among both patients and caregivers, including posttraumatic stress. If massage/acupressure can provide relief from symptoms and even provide pleasurable feelings, it may reduce parental feelings of helplessness in the face of their child's pain and discomfort, a key symptom of posttraumatic stress. [35
] Future research could also investigate the extent to which massage influences children's perceptions of their bodies [36
] as they struggle with chronic disease and prolonged, invasive treatments for these diseases.