Despite advances in the assessment and treatment of symptoms, parents of children with serious illness continue to report that their children suffer.1-3 According to the most recent data available, nearly 14 million children younger than 18 years in the United States have special health care needs.4 Children with congenital and genetic life-threatening/life-limiting conditions, many of whom are developmentally delayed, experience a large number of serious symptoms and have complex comorbidities requiring medical management.5
The goal of palliative care is to address symptoms and reduce suffering. Many palliative care experts include integrative therapies, also known as complementary or nonpharmacologic therapies, as an essential part of palliative care for symptom management.6,7 Results from the National Health Interview survey (2018) indicated that 11.8% of children had experienced some type of integrative therapy within the previous year with children participating in yoga (8.4%) and meditation (5.4%), reflecting a significant increase from the previous 2012 survey.8 Several integrative therapies including Reiki, hypnosis, distraction, mind-body interventions, massage, yoga, and aromatherapy are accepted by children and parents and have at least some evidence for their effectiveness. Specifically, integrative therapies may result in decreased pain and anxiety and increased quality of life for children and adolescents with serious illness.6,9-14
Reiki therapy is a relaxing biofield energy therapy that uses light touch. The National Center for Complementary and Integrative Health classifies Reiki therapy as a biofield energy therapy in which the goal is to facilitate the body's own healing response.15 Many children receiving palliative care could benefit from Reiki, which has been used successfully in adults16-18 to improve symptom management. Although the evidence supports many integrative therapies as beneficial, there is little evidence exploring the use of Reiki and its feasibility with children. This is the first known study that used Reiki therapy with children receiving palliative care in the home and collected data on the experience with the child as the primary informant in addition to parent report. The purpose of this article is to present findings on the feasibility and acceptability of using Reiki therapy with children aged 7 to 16 years receiving palliative care.
METHODS
Research Design
This study used a 1-group pre-post mixed-methods design conducted over a 5-day period. Feasibility was measured by the ability to enroll participants and complete data collection, calculated by the proportion of approached subjects who enrolled in the study, enrolled subjects who completed data collection, and participants who dropped out. Reasons for attrition were monitored. Structured interviews were conducted with parents and verbal children after the second Reiki therapy session to assess acceptability and capture their overall response.
Sample and Setting
A convenience sample of parent-child dyads (n = 16) was recruited from a large pediatric palliative care service in western Pennsylvania. At the time of data collection, the palliative care team served 260 children with ages ranging from prenatal to 28 years (mean age, 8.12 years), and 78 children were between the ages of 7 and 16 years, the target population of this study. Parent-child dyads were included if (1) the child was cared for at home by a parent or guardian, (2) the child was actively managed by the palliative care team at the time of the study, and (3) both the parent and verbal children spoke English. Both verbal and nonverbal children were included in the sample for 2 main reasons: first, approximately half of all children in palliative care are developmentally delayed and nonverbal, making the sample more representative of pediatric palliative care as a whole, and second, we had difficulty recruiting verbal children for the study, while the parents of nonverbal children were eager to participate. Approval was obtained from the university institutional review board.
Procedures
Recruitment was completed in person in the palliative care outpatient clinics during regularly scheduled appointments. Recruitment was limited to families who had clinic appointments during the study period and who could be approached with someone from the palliative care team. We approached families who fit the inclusion criteria in the clinic examination room either before or after their appointment. After consent, demographic data were collected, and appointments for the Reiki therapy treatments were scheduled at a time convenient for the family. We offered sessions during the day, evenings, and on the weekends. Each parent-child dyad was assigned a single code number for all study data to maintain anonymity. Spontaneous explanations for declining participation were noted.
The intervention consisted of two 24-minute Reiki therapy sessions in the home with 1 to 3 days between sessions. A standardized head-to-toe protocol of 12 hand positions held for 2 minutes each was created for the study and implemented by a trained Reiki master. The child was clothed and in a comfortable location and position in the home (eg, relaxing on a sofa, sitting in a chair, or lying in bed). Parents were invited to watch the session but were asked to hold questions or comments until the session was complete. During the second visit, an assistant conducted a brief structured interview to explore the experience of Reiki therapy, individually with the parent and verbal child, to determine acceptability (Table 1). Field notes were kept, and all interviews were digitally recorded and transcribed verbatim.
Data Analysis
Parent and child interview data were analyzed using thematic analysis. Two authors (ST and CD) independently coded each interview and established consensus through in-depth discussion at each step of the analysis. Themes and subthemes related to the child's experience and the parent's perceptions of the child's experience with Reiki therapy were identified. Themes were compared, and final definitions were established.
First transcripts were coded line-by-line by both authors. Patterns in the data were considered iteratively. Codes were compared, and final definitions were established via consensus. Themes and subthemes were determined inductively by reviewing patterns in the codes and named in the participants' own words. In order to establish trustworthiness of the qualitative portion of this study, credibility of the process was established though triangulation by comparing the child and corresponding parent interviews in combination with field notes and the quantitative results.19
RESULTS
Sample
We approached 24 parent-child dyads between October 2014 and May 2015. Sixteen dyads completed the study. Each dyad included 1 parent and 1 child. One of the dyads requested that their full-time nurse caregiver be included, resulting in a total of 33 participants. The mean age of the children was 12.6 years (range, 8-16 years), most were girls (n = 11), and most were White (n = 15), with one child described as mixed African American/White. Seven children had cancer, 4 children had congenital conditions (microcephaly, cerebral palsy, seizures), and 5 children had a genetic condition (cystic fibrosis, muscular dystrophy). Because all of the parents who participated were mothers, the term "mother" will be used to describe the parent. The mothers were all White with a mean age of 43.7 years (range, 30-70 years). All of the mothers had at least a high school education, and most (n = 14 [87.5%]) had at least some college. Most mothers were employed at least part-time (n = 11 [68.9%]).
Feasibility and Acceptability
Study recruitment is depicted in the Figure. After both Reiki therapy treatments had been completed, we interviewed the verbal children (n = 7, 1 child refused) and their mothers regarding the acceptability of the Reiki therapy treatments (Table 1). Parent and child perspectives on feasibility and acceptability are answered in Table 2.
From a provider perspective, travel distance from the hospital to participants' homes is an important consideration. More than half of the participants (9/16) lived within 25 miles, 6 of 16 lived between 26 and 50 miles, and the remaining participant was 72 miles from the hospital. The mean distance to participants' homes was 28.2 (SD, 18.31) miles (range, 2.5-72.3 miles).
The Reiki Experience According to Mothers and Children
Seven of the 8 verbal children and all mothers (n = 16) of the verbal and nonverbal children completed the interview questions related to their Reiki experience. In 1 dyad, the nurse, a primary daytime caregiver of a nonverbal child while the mother was at work, was also included in the interview process following receipt of the mother's permission. The Reiki therapy experience described by the children and mothers in their own words resulted in 3 themes: "feeling better," "hard to judge," and "still going on" (Table 3).
Feeling Better
The theme "feeling better" was generally articulated by 5 of the children and 13 of the mothers of both verbal and nonverbal children. Many of the comments related to the theme "feeling better" were detailed and specific. Therefore, this theme was further divided into 5 subthemes including "really relaxed," "not hurting that bad," "calmed me down," "happier," and "heats me up."
Really Relaxed
Three of the children and 8 of the mothers described the Reiki therapy sessions as relaxing. The mothers of nonverbal children also characterized their child as very relaxed when describing their child's response to the Reiki intervention. One mother said, "She was[horizontal ellipsis], you know, breathing harder, but as the therapy went on, her heart rate went down, so you could tell she was relaxing." Another mother commented, "Her heart rate definitely went down, you know, from what it was. It kept going down from when the therapy went on. [horizontal ellipsis]that had to show me that she was, you know, relaxed during it." Another nonverbal child was described by her mother as typically being anxious with new people. This child relaxed and fell asleep during the first treatment. A third nonverbal child who tended to be constantly moving, stopped moving, quieted, and put her head on the interventionist's arm. She remained awake with her eyes open, appearing relaxed and content. Her full-time nurse caregiver verified this observation when stating, "she just leaned on, on [interventionist's] arm, and just really relaxed."
Not Hurting That Bad
The mothers of both the verbal and nonverbal children as well as the children themselves reported less pain after the Reiki session. One mother said, "She was in a lot of pain when she [the interventionist] came earlier this week, and by the time she left, she [child] was almost asleep." Her daughter stated that "It's still hurting, but it's not hurting that bad."
Calmed Me Down
Three of the children and 5 mothers described the treatment as very calming. Two different children specifically stated, "It was calming," and a third stated, "it calmed me down." A mother mentioned, "[horizontal ellipsis]after the treatment, he was really calm." Unlike the first treatment, shortly into the second treatment, one nonverbal child leaned back into the interventionist and remained in that position throughout the treatment. Another nonverbal child who had appeared a bit worried during the first treatment settled quickly during the second treatment and was documented to appear calm and content.
Happier
Two children and 5 mothers mentioned that their child was happier after the treatment. When asked how she could tell her child felt happier, a mother of one teenaged girl commented, "She talked more." A mother of a nonverbal child said, "He would lean in toward her [the interventionist], or [horizontal ellipsis], just kinda be happy about it."
Heats Me Up
Two children mentioned being warm during and after the Reiki therapy treatment. One mother repeated a conversation with her daughter following the first Reiki therapy treatment, "[horizontal ellipsis]she said that it was neat that she felt really warm. [horizontal ellipsis]that the therapist's hands felt really warm."
Hard to Judge
Three of the mothers felt they could not judge the effect of the Reiki therapy treatments because their child was not experiencing pain or anxiety. One mother responded, "She was just kind of indifferent to it, she does not have pain, so I do not know that we got the full benefit of it."
Still Going On
Two children and 4 mothers commented that the effects of the Reiki therapy treatment lasted the rest of the day or for 1 or 2 days after the treatment. A mother of a nonverbal child stated, "Maybe 2 hours later after the treatment, he was out like a light. It was the best night ever that he slept. [horizontal ellipsis]I would have to say [the effects lasted] the rest of the night and the whole next day." Another mother of a child with chronic seizures said that her child's heart rate "[horizontal ellipsis]lowered probably about halfway through [the Reiki treatment], and it just stayed, just stayed lowered after [the interventionist] left and everything."
With very few exceptions, the children seemed to benefit from the Reiki therapy treatments. The children's experiences ranged from feeling "just not so tense and stuff" to "It makes me feel like, warm" and "I felt really relaxed" and "Well, it's like different!" Moreover, the mothers identified that their children had a positive experience and derived some benefit from the Reiki therapy as reflected by their comments, "After the treatment, he was really calm" to "He seems to enjoy it," and "It was a good experience." Most mothers (n = 15) stayed to watch one or both treatments and often seemed fascinated watching the changes in their children. Mothers of the nonverbal children were heard whispering comments such as "Look at his face!" More than one mother identified that the Reiki therapy treatment would likely offer more benefit if their child was in the hospital or was experiencing symptoms. Overall, Reiki therapy was well received by all the children and their mothers, even when they were not sure of the response. Most dyads expressed they would have liked to continue the treatments.
DISCUSSION
Integrative therapies such as massage, hypnosis, or Reiki therapy are often used with children in palliative care for symptom management without the additional adverse effects that can be the result of increased medications.6,7,20 Until recently, only one research study had been completed with children using Reiki therapy,21 although it has been used clinically for many years without supportive scientific evidence in major children's hospitals and other care areas.
Our pilot study contributes to the science as it uniquely explored the feasibility and acceptability of using Reiki therapy with children aged 7 to 16 years receiving palliative care at home. All dyads who began the Reiki therapy treatment were responsive and completed the 2 sessions and corresponding interviews. Our results that (1) no one dropped out of the study once they began, (2) all of the mothers stated they would participate again, and (3) not one child or mother thought the treatment should be done differently speak to the acceptability of Reiki therapy as an intervention for children receiving palliative care. A majority of parents (62.5%) were interested in learning Reiki therapy themselves in order to provide it to their child when needed. Very little research using Reiki has been done in a community setting, but 1 study with adults experienced a 20% attrition rate mainly because of scheduling and participant travel time.22 Our study was sensitive to the need for flexible scheduling and eliminated the participant travel time because sessions occurred in the home.
The interviews with the children provided valuable insight regarding how they felt after the Reiki therapy treatments. The interviews with the mothers aided us in understanding the child's reaction to the Reiki therapy. The reactions of the nonverbal children who cannot prevaricate or dissemble and whose reactions are purely their own without social-cultural restrictions may tell the story best. The nonverbal children initially showed their anxiety for a new person and situation; however, their anxiety levels decreased as the session progressed. Importantly, these children did not experience increased anxiety for treatment 2. The mothers of the nonverbal children were often fascinated by their child's reaction to the Reiki therapy treatment. These observations support the need for further research into Reiki therapy for children with neurological challenges that would be acceptable to other parents and their children.
Although we neither measured nor asked about happiness, children reported feeling happier and mothers reported that their child was happier. Although happiness has not been found to be a common variable measured related to Reiki therapy, other studies examining Reiki have reported decreased depression for participants, including 1 study with adolescents.23,24 With increasing mental health issues, particularly those with chronic conditions, Reiki therapy could hold promise as an alternative therapy for children and adolescents beyond the treatment phase.24
Acceptability can go beyond the words of the children and families into the reactions of the neurologically devastated children. The interventionist documented one experience when a nonverbal child who was in constant motion due to a neurological condition suddenly stopped all movement and laid her head on the interventionist's arm for a full 10 minutes during the second treatment and seemed to just be relaxing in the moment. In another session, a boy who was unable to move on his own because of muscular dystrophy expressed his delight as his entire face lit up as the interventionist entered the room for the second session. These experiences speak to the receptiveness of the children and families to Reiki therapy. Other groups have found Reiki to be acceptable and helpful to their well-being. Most adults (90%) in an inpatient residential treatment setting attended Reiki sessions offered and reported decreased depression and increased ability to focus, among other benefits.25 Similarly, veterans reportedly enjoyed Reiki and massage the most among a variety of complementary therapies offered and reported decreased stress and increased quality of life.26
Overall, the results of this study are very encouraging for the use of Reiki therapy with children and adolescents. Reiki is feasible and acceptable to children with life-limiting illness and their parents. Participants in this study described positive benefits from the Reiki sessions. Yet, larger trials are necessary to demonstrate a more comprehensive effect of Reiki on symptom management in pediatric patients. Further study of Reiki therapy in children receiving palliative care and other pediatric populations is worthwhile and necessary in order to further advance the scientific evidence of the benefit of Reiki therapy.
LIMITATIONS
There were several limitations to this study including small sample size and 1-group design, and the principal investigator (ST) also completed recruitment, consent, and the intervention. Slow recruitment resulted in a heterogeneous sample that included verbal and nonverbal children. Having only 8 verbal children (and one refusal to participate in the interview) limited our results in understanding the child's experience. The protocol was structured to minimize bias due to the interventionist performing the Reiki therapy. The interventionist was blinded to the pain and anxiety assessment. Measures of heart and respiratory rates were included to add objective data. However, a control visit could be added to further understand the interventionist-participant relationship and its effect on the outcomes. Additionally, interviews were conducted by a research assistant in a separate location. Finally, sample bias may have been a factor influencing families who participated and those who did not. Parents unwilling to have a stranger in their home may have declined, or parents who were more open to integrative therapies may have been more likely to participate and say positive things about the intervention than those who are not.
CONCLUSION
Providing Reiki therapy in the homes of children receiving palliative care was both feasible and acceptable. Parents in general were enthusiastic, and the children were open to this complementary therapy. Verbal children's experiences provided valuable insight, whereas nonverbal children expressed their reactions through actions and facial expressions. The receptiveness of the parents and children was encouraging and reinforced the importance of conducting more sophisticated studies using Reiki therapy. Reiki therapy is promising as an adjunct to medical management and as a means of minimizing suffering and increasing comfort in this vulnerable population of children receiving palliative care.
Acknowledgment
The authors would like to acknowledge the contribution of Susan M. Cohen, PhD, APRN, FAAN, mentor, doctoral committee chair, and friend. Since the completion of this study, Dr Cohen left this life and we would like to dedicate this article to her memory.
References