Ethnicity, traditional healing practices, and attitudes towards complementary medicine of a pediatric oncology population receiving healing touch in Hawaii

Abstract

Objective:

Cultural competence among healthcare providers is becoming increasingly important. Hawai’i is an ethnically diverse island state that has a high rate of traditional and complementary medicine use. We previously reported on the feasibility of delivering Healing Touch (HT) to pediatric oncology patients, and its impact on pain, distress and fatigue. Our current objective is to examine the ethnic and cultural characteristics of this patient population, including traditional health related beliefs.

Methods:

Demographic data and feedback from subjects and their families from the 2009-2010 HT study conducted in Honolulu were analyzed.

Results:

The majority of the participants were Asian American and/or Native Hawaiian or other Pacific Islander. Almost half of the participants were more than one race. Traditional cultural health related beliefs, as reported by patients and families, sometimes aligned with patient's experiences with HT, however, degree of acculturation/time living in the United States seemed to play a role as well, with younger generation perhaps being less “traditional”. Common health related themes/values across the predominant cultures were 1) emphasis on family/clan and 2) mind/body connection.

Conclusions:

HT appeared to be well accepted by subjects from a variety of ethnic backgrounds. Several patients had attitudes/beliefs around healthcare that were rooted in their traditional cultural values, but this was not universal. Knowledge of different cultural attitudes on health, and traditional/complementary medicine, will improve patient care. Future areas of research could examine the acceptance of HT among pediatric oncology patients in geographic areas with differing cultural demographics (i.e., continentalUnited States or internationally).

Introduction

Cultural competency in health care can be defined as “the ability of systems to provide care to patients with diverse values, beliefs, and behaviors, including tailoring delivery to meet patients’ social, cultural and linguistic needs”.[1]

It is known that “lack of cultural competency in care contributes to poor experiences and outcomes from care for migrants and racial and ethnic minorities”.[2] Because of these poor outcomes, health care organizations prioritize cultural competency training and cultural sensitivity to address quality care for ethnically diverse patient populations.[3] The increasing use of complementary and alternative medicine (CAM) in US healthcare has the potential of raising awareness of health practices of non-Western cultures to healthcare workers.[4]

The use of CAM has been on the rise among oncology patients in general, and more recently, among pediatric oncology patients.[5,6] In the field of pediatric oncology, it is known that “a family's cultural context directly influences how they define and manage their child's cancer care”.[7] Understanding this context can “guide nurses in delivering holistic, culturally competent care”. However, there is little in the literature on how to provide culturally competent care to families of children with cancer.

Hawai’i is an ethnically diverse island state that differs quite a bit in terms of ethnic demographics compared to the continental US (Caucasian 26.6% vs. 77.7%, Asian alone 37.7% vs. 5.3%, and Native Hawaiian or other Pacific Islander alone 10% vs. 0.2%).[8] Hawai’ihas a high rate of CAM use as compared with the continentalUS. In particular, acupuncture is used 4 times as much among adults in Hawai’i compared to the continental US, and energy therapies (such as Healing Touch) are used 6 times as much.[9]

The purpose of this study is to describe ethnic and cultural backgrounds of the patientpopulation that participated in a Healing Touch (a CAM modality) study among pediatric oncology patients and to present patient and family reactions to the use of Healing Touch in a clinical setting.

Methods

Demographic and experience data of subjects involved in a Healing Touch(HT) study conducted at (blinded institution)from 6/30/2009-7/1/2010 among pediatric oncology patients were reviewed. Demographic information was obtained at the time of hospital admission, and then further querying was performed whenever “mixed race” was selected, to more specifically identify each race. Healing Touch is a biofield therapy that encompasses a group of non-invasive techniques that utilize the hands to clear, energize, and balance the human and environmental energy fields.[10]

Study design

The study is described in detail elsewhere;[6] briefly, this was a 1-year randomized prospective study consisting of 2 arms. The HT arm was considered the treatment group, and reading/play activity was designated as the control group. Participants were randomly assigned to each arm. They received their intervention for 30 minutes at each inpatient or outpatient encounter. Participants, parents, and care providers were asked to complete pre-intervention and post-intervention assessments.

In all, 15 participants, aged 3 to 18 years old, were approached about the study between July 2009 and June 2010. A total of 9 participants enrolled (recruitment rate of 60%); 6 patients were randomized to receive HT sessions, and 3 patients received reading/play activities. Those in the HT group showed significant decreases in the scores for pain, stress, and fatigue for participants, parents, and caregivers. Furthermore, parents’ perception of their children's pain decreased significantly for the HT group when compared with the group receiving reading/play activity. This was one of the few studies at the time that showed that providing HT in the pediatric inpatient oncology population was a feasible task.

In addition to the pre-and post assessment forms regarding pain, stress and fatigue, qualitative experience data was collected as well. This consisted of patient and family impressions and direct quotations regarding their experience with the study and with HT, as reported to bedside nurses and study investigators.

These free-form and open-ended comments from patients and families served as the main data set for the current review. The data collection process was informal; however, all the families involved provided commentary and record keeping was managed by the primary investigators.

Descriptive statistics were calculated for demographic data at (blinded institution) and qualitative analysis was done to identify common themes in the experience data.

Results

The 9 subjects in the study reported diverse ethnic backgrounds, with the majority being Asian Americanand/or Native Hawaiian or other Pacific Islander. This is consistent with the ethnic diversity of Hawai’i and the pediatric oncology service at (Blinded institution).[11] Native Hawaiian/Part Native Hawaiian andFilipino backgrounds were most prevalent (3 children and 2 children, respectively), and the remaining ethnic backgrounds were of equal distribution [1 child each of Hispanic, Samoan, Micronesian (Marshallese) backgrounds] as well as 1 mixed race child of Caucasian, Portuguese, German, Filipino and Micronesian descent. The Native Hawaiian/Part Native Hawaiian children also had more than 1 race.

The pediatric oncology service as a whole, at the time the study was conducted, had Native Hawaiian/part Native Hawaiian as the predominant ethnicity (38 children, or 25.8%) followed by Filipino (26 children, or 17.8%) during the study period.

Reflections from the subjects and families along with associated traditional cultural health related behaviors are as follows:[12,13]

Native Hawaiian: All 3 Native Hawaiian/Part Native Hawaiian families were very enthusiastic about their children receiving HT, as well as excited about being able to participate in a study that may help other children with cancer in the future.

The single mother of a 14 year old boy from a neighbor island with poor support system in place in Honolulu was very anxious and expressed it in an assertive manner during interactions with the team. She wanted to try anything that could help her son, including HT. “My son is so sick, we have been in the hospital for months but I believe this (HT) is helping him”. Over the course of the study, this mother became a cheerleader of sorts for HT, telling other parents about it in the hallways.

The parents of another Native Hawaiian child (8 year old boy) wanted HT for their child; however, the child himself eventually rejected it. “We want him to receive HT, it calms him, but he does not want any more people in the room”, said the mother. All 3 families had an interest in holistic aspects of care, though none were utilizing any other forms of traditional healing for their child.

Filipino: The 2 Filipino families had very similar reactions; the parents of both were very interested in HT and the study. One family had a prior belief in CAM modalities and wanted integrative treatment. However, the children were not very enthusiastic about being involved. The mother of a 6 year old girl said, “We believe in CAM therapy, use meditation for ourselves and want HT and to be in the study. We tried to make her continue but now she doesn’t want.”

Catholic faith was strong in both families, and family dynamics in traditional Filipino households may play out so that the patient assumes the pampered “sick role” and family provides the support.

Hispanic: The Hispanic teen (age 13) was very spiritual, and very eager to receive HT, to help him be cured. “I want (it) every day. It makes me feel calm and sometimes sleep”, he said. He was from an outer island, and his parents spoke only Spanish, so he translated for his family often during his time of care. His parents appreciated his maturity and trusted his decision making. This aligned with a holistic perspective that maybe seen in some Hispanic families.

Samoan: The Samoan family was eager to try all types of therapy that may help with the child's cancer. The patient was 11 years old and at times felt lonely and tired while she was ill. Her mother said, “I think HT is a good thing for (her), it helps her relax”. The child seemed to enjoy the positive attention during the study. In traditional Samoan culture, caring for children is seen as a village responsibility. Families may seek traditional healing before accessing Western medicine, although this was not seen with this family. Traditional healing modalities used in Samoa include massage treatments, herbal preparations (some of which have proven pharmacologic activity) and counseling.

Marshallese: The Marshallese child and family both enjoyed HT and participating in the study. Mother seemed to have a basic understanding of HT, and the child said it made her “feel better”. They shared that Marshallese traditionally have a clan model of community. The relationship with the US healthcare system is complicated for the Marshallese. For years the US used an area in Micronesia that included the Federated States of Micronesia, Republic of Palau, and the Republic of the Marshall Islands, as a nuclear testing ground. As part of the treaties signed with these governments the US provides healthcare services for Micronesians living in the US.

Common health related themes/values across the predominant ethnicities in the study were 1) emphasis on family/clan and 2) mind/body connection.

Discussion

The importance of social and cultural factors in health care and health seeking behavior is already well established. Physicians, nurses, and allied health professional are expected to possess a basic level of cultural competence, in order to better understand patients and families’ perspectives on illness, help seeking behavior, coping strategies, and treatment options. This study reviewed ethnicity and post-study feedback to gain insight into the ethnic and cultural factors that may influence patient experience with HT. The findings from the current study will add to the body of knowledge on the use of CAM in pediatric oncology patients, especially as it relates to cultural competency.

In our original study, we were interested in how HT would affect children with cancer in terms of their stress, fatigue and anxiety. During that process, we learned so much more about these children and their families. A striking observation was that the pediatric oncology service in Hawai’i was quite ethnically diverse, and differed from that of the continental US.

We recognized that the ethnic and cultural background of the families provided the lens through which they experienced not just pain, stress, fatigue, and HT, but how they experienced all aspects of the care that they received. We took this as a cue to look more closely at the patients we serve, to try and get a better understanding of their cultural context so that we could improve our cultural competence.

CAM use is known to vary among ethnic groups and also within Asian-American subgroups.[14] The participants in this study were predominantly part-Native Hawaiian with a variety of ethnic heritages. Native Hawaiians are defined as citizens of the United States who are descendants of the indigenous people of Hawai’i, comparable to American Indians, and Alaska Natives.[15] HT appeared to be well accepted by this culturally diverse population of pediatric oncology patients. This may be related to the influence of cultural beliefs and with HT aligning with traditional healing practices of many of the study participants. For example, one of the traditional healing techniques used in Native Hawaiian culture is lomilomi, a healing massage that combines the use of prayer, breath, and energy.

The predominant race of the study subjects was Native Hawaiian or other Pacific Islander. Pacific Islanders are made up of 3 sub-populations, Polynesians (e.g. Native Hawaiians, Samoans, Tongans, etc.), Micronesians (Chamorros, Chuukese, Marshallese, etc.), and Melanesians (Papauans, Fijians, Solomon Islanders, etc.). These sub-populations have different values, cultural beliefs, and healing traditions. As the newest immigrant group to Hawaii, cultural competence when treating Micronesians is often lacking in the US health care system. Identifying treatment methods that resonate with various racial and ethnic groups is important for delivering culturally competent health care.

Regardless of ethnicity, it seemed that all of the parents involved in the study were eager to try HT. Traditional cultural health related beliefs sometimes aligned with patient experiences with HT, however, degree of acculturation/time living in the United States seemed to play a role as well, with the younger generation perhaps being less “traditional”.

It is interesting to note that the Filipino youths were less enthusiastic about HT than all the other children; this may have something to do with the older generation being more strongly “traditional” while the younger generation may be more “Western” or “Americanized”. Viewed another way, however, this behavior could actually be seen as the youths falling into their “traditional” roles, i.e., playing the passive, sick, pampered role while the family plays the part of the active, enthusiastic caretaker.

Enthusiasm for HT could also be due to do the fact that all of the parents were dealing with the real possibility of losing their children to a life threatening illness, and they needed to look for anything that might provide them with hope for their children's recovery.

Limitations

Limitations of this study were its small sample size, and the lack of a formal tool to capture patient experience commentary. Additionally, we would like to emphasize that every patient is a unique individual, and it is essential to try to avoid over-generalization when it comes to learning about cultures different than our own. It is imperative to understand what culture means to each patient, as it will undoubtedly vary from person to person.

Future areas of research could examine the acceptance of HT among pediatric oncology patients in geographic areas with differing cultural demographics (i.e., continental US or internationally), to further expand the literature on culturally competent pediatric oncology care. Locally, future studies will include a needs assessment of CAM use and traditional healing practices among pediatric oncology patients.

Being attuned to the cultural and ethnic heritages of the children and families is important for providing patient-centered care: it is one of the foundations of optimal patient care and parent satisfaction.

Conclusion

The majority of participants in our study were of Asian or Pacific Island heritage, and HT appeared to be well accepted in general. Several patients had attitudes/beliefs around healthcare that were rooted in their traditional cultural values, but this was not universal. Knowledge of different cultural attitudes on health, and CAM, can help improve cultural competence amongst healthcare providers.