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Interdisciplinary Perspectives on the Value of Massage Therapy in a Pediatric Hospice

Egeli, Deetria RMT, MRSc; Bainbridge, Lesley BSR(PT), MEd, PhD; Miller, Tanice BScN, MALT; Potts, James BPE, MPE, PhD

Author Information
Journal of Hospice & Palliative Nursing: August 2019 - Volume 21 - Issue 4 - p 319-325
doi: 10.1097/NJH.0000000000000576
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Abstract

INTRODUCTION

Background

Registered massage therapists are health care professionals for whom understanding of end-of-life (EOL) care is a mandated entry-level competency in regulated provinces in Canada.1 Ideally, registered massage therapists in hospices should use clinical reasoning, reflection, and interpersonal skills to maximize patient safety, provide effective and thoughtful treatment, and create a compassionate therapeutic relationship. Thus, supervised clinical placements are an essential strategy to foster massage therapy (MT) students’ skills while providing safe, effective, and ethical treatment to patients.1

Pediatric hospices are unique in that children are still developing, often have multiple diagnoses, experience unique symptoms, and tend to access palliative services over a longer period than adults.2 Children may access hospice care for conditions such as cancer, chromosomal disorders, neuromuscular disorders, central nervous system conditions, and cardiopulmonary conditions.3 The care requirements of children in their last year of life are extensive,4 and hospice plays an essential role in providing, improving, and coordinating treatment, quality of life (QOL), care planning, and EOL care for these children and their families.

A parent’s emotional, mental, and physical health is impacted by a child’s diagnosis.5 Parents may experience changes in their self-care behaviors, sleep, and social relationships.5 Parents of children with complex palliative conditions spend close to 9 hours per day, on average, managing their children’s health care needs.6 Sixty-two percent of palliative families in Toronto live in high-poverty neighborhoods, resulting in significantly more stress on the entire family.7 Siblings can face emotional and behavioral difficulties and reduced QOL as they witness the deterioration of their chronically ill sibling while often having disproportionately less time with their caregivers.8-10 The hospice’s family-centered care model recognizes that the health of the entire family matters.

Working in palliative care is rewarding and is viewed by many as a privilege that can help cultivate spirituality, presence, and an awareness of important aspects of life.11 The staff’s physical, psychological, and spiritual well-being must be protected and is essential to delivering effective care in the hospice setting.12 Job satisfaction, a healthy team, and staff retention lead to better care delivery. The wellness of the entire care team is a priority at Canuck Place Children’s Hospice (CPCH) and was an initial driving force in clinicians’ advocating for a MT practicum in the hospice.

A database search (CINAHL, PubMed, and EBSCO) for peer-reviewed articles using the terms pediatric, massage, and hospice or palliative published from January 2014 to January 2019 illustrates the need for further inquiries into the role of MT in hospices. The search revealed 1 systematic review of complementary care practices among children with cancer, summarizing 9 articles about MT between 2001 and 2013.13 The other relevant publication was a pilot study where 10-minute massages were delivered both to the children in care and a family member to examine the feasibility and outcomes of providing MT services in a pediatric hospice environment.14

This lack of research, coupled with the vulnerability of the pediatric patient population, warrants a conservative qualitative inquiry into stakeholders’ perceptions of MT within the pediatric hospice setting. The purpose of this study was to understand how members of the interdisciplinary team in a pediatric hospice environment perceive the value of MT within this setting. These perspectives are important to understand the role of MT in pediatric hospices.

Setting

This study was conducted at CPCH in Vancouver, British Columbia. In the 2017-2018 fiscal year, CPCH cared for more than 361 children with both acute and/or chronic life-threatening conditions while also supporting their families. The CPCH offers an innovative holistic, supportive, and compassionate space for children’s EOL care, as well as pain and symptom management.15 It also provides highly specialized consultation services, offers respite and family support, and delivers an extensive network of bereavement support for families during and after loss.15 The CPCH team includes clinicians (physicians, nurses, social workers, etc.) support staff (administrators, school teachers, housekeeping, etc.), and an extensive network of volunteers.15 Within that network, CPCH provides MT through a weekly student MT practicum.

This practicum, which has been hosted by CPCH since 2011, allows senior-level students enrolled at West Coast College of Massage Therapy in a full-time, year-round, 20-month intensive MT program to provide an average of 496 supervised treatments each year to individuals in care, families, volunteers, and the hospice care team. This context offers an opportunity to explore health care professionals’ perspectives regarding MT within the hospice and its perceived value in pediatric palliative care.

METHODS

Study Design

This study used a phenomenological approach to explore the participants’ lived experiences.16 Professionals’ perspectives on the value of MT within a children’s hospice requires acknowledgment of the medical and social culture that prevails in this setting. Members of the hospice care team combine their knowledge and skills to care for, interact with, and support individuals and their families throughout their palliative care journey. This interconnectivity among the care team, the person in care, and the families of those in care creates a heightened awareness regarding what MT can mean to individuals within this setting.

Semistructured individual interviews were conducted to explore the experiences, beliefs, and perspectives with greater confidentiality than can be offered in focus groups. Coupled with the descriptive phenomenological approach, reflexive strategies were used to identify and bracket the authors’ personal assumptions to produce outcomes that best reflect the thoughts of clinical staff at CPCH.17 These strategies included reflective journaling, a delayed literature review, and preinterview mindfulness to remain present to the expressed thoughts, emotions, and feelings of participants.17

Sampling

Purposive sampling was used by asking for care team members who had experience with the MT practicum (referring patients, being present during MT treatments, or having received a treatment themselves) within CPCH. Recruitment occurred via an internal email detailing the study objectives to CPCH clinicians and inviting them to participate. All research informants were women, were employed at CPCH, and had at least 10 years of clinical experience in pediatric and/or a hospice/palliative care setting. In total, 6 informants were interviewed (initial interview and follow-up). Of the 6 informants, 5 had made use of the practicum themselves, and every participant used MT in their personal time away from work.

Data Collection

Data were collected through individual hour-long semistructured interviews conducted at CPCH using a piloted interview script. The dialogue, propositions, and questions unfolded iteratively throughout the study. Participants were encouraged to respond freely to the questions, using either direct answers and/or sharing stories that reflected what they wanted to say. Toward the end of each interview, paraphrasing and reflecting were conducted, and participants were provided an opportunity to revisit the questions. The interviews were voice recorded; notes were taken, and 1 of the authors (DE) transcribed all of the recordings verbatim soon afterward. Following early data analysis, member checking was used through individual follow-up interviews to allow information to be validated.18 Data saturation was reached, with no new themes emerging, while still having diversity in what constituted each of the themes (words, narratives, and contextualizing information) within and across study participants.17,19

Data Analysis

Thematic analysis was used owing to its applicability across a range of methodologies and philosophical research approaches.20,21 Thematic analysis is a method for organizing and identifying meaningful patterns in qualitative data.20,21 Verbatim transcripts were created and themes were subsequently identified. There was a back-and-forth interpretation of transcripts where interviews and member checks were examined simultaneously, all while continuing to engage in various stages of data collection and interpretation with other informants.21 Once all the themes had been established, the transcripts were reviewed again to ensure that the themes that were selected were encompassing and representative of the sample.

The data were mined using a more superficial data-driven inductive approach given the desire to reflect the clinicians’ (rather than the researcher’s) perspectives, the lack of extant research, the outsider perspective of the first author, the first author’s sole coding of the data, and the lack of a preexisting framework.21 As such, the resulting outcomes represent a rich description of the entire data set, highlighting the themes that were most prevalent among most of the informants.

RESULTS

The major themes that emerged from clinicians are presented below along with a participant quote. Themes were identified using the terms, language, and narratives of what MT means to clinicians in the pediatric hospice setting. All clinicians recognized that individuals needed to value MT and touch to benefit from, and to want to engage in, the service. As such, all discussion about perceived benefits that follows reflects individuals who value such services. A MT practicum in the hospice was perceived to be of value from a practical, physical, and psychosocial perspective.

MT as a Practical Support

A Valued Support

We can’t even put a price on it, they [families] appreciate it so much and to be able to offer it makes you [clinical staff] feel great too.

Massage therapy is viewed as a positive integrated service at CPCH for children in care, families, and staff. Clinicians expressed joy at seeing children, families, and staff enjoy and benefit from a massage. Massage is seen as a gift that clinicians enjoyed receiving and offering.

Financial and Practical Accessibility

Most of the families aren’t working. They won’t have benefits. Some of them don’t even have pay cheques.

I think for families to access massage—they are here, they don’t have to go anywhere and there is somebody else looking after their kid. That’s a whole set of logistics, circumstances, and realities that they don’t have to worry about. If they are at home in their community: Who is looking after my kid or kids? How am I getting there? Do I have transport? We have removed a whole set of barriers.

Clinicians valued having MT in the hospice for allowing access to the service without the financial and practical barriers that most children and families face in their communities.

Self-care

Being able to promote self-care for all family members, the ill child and the siblings. It’s important. When they are here is the time that they need it the most.

Making MT available in a hospice was thought to reinforce the organizational belief that self-care is important. Offering MT to staff at CPCH was valued as a tangible support in a workplace that requires a significant physical, emotional, and intellectual investment. Offering MT provides 1 tool in a family’s journey of caring for their child and/or their transition into bereavement support.

MT as a Physical Support

Injury Support and Prevention

These parents are doing this lifting and stuff at home. They don’t have the same machines we have. They are lifting the kids in and out of cars, out of wheelchairs, they are lifting the wheelchairs, getting them into the baths. This is a heavy strain. I’m amazed by how many little moms I see who are smaller than me who are lifting kids that I don’t lift by myself—I make sure to grab another worker here or I get a machine lift. These parents are doing this by themselves—it just blows my mind. I’m like, how are you not throwing your back out?

Clinical staff appreciated MT for its potential to support injuries and act as a form of physical maintenance for themselves, clinical staff, and families. Clinicians spoke to the significant and sheer volume of physical demands required as a part of caregiving (lifting, bathing, transferring, coordinating appointments, etc). Opportunities to rest and recover are rare for families who may spend weeks living in and out of hospitals. Staff and families were provided with an opportunity to care for their physical needs and help with injuries, muscle stiffness, and pain by using massage in the hospice.

Children’s Symptom Management

For the chronically palliative group, I think they probably use the massage program for functional purposes: pain reduction, comfort, maybe to support mobility. For adolescents with cancer, it’s probably offered more in the spirit of well-being and helping them to feel okay in their bodies because their bodies change really dramatically from cancer treatment.

Physically, MT in a hospice was thought to have the potential to support children’s mobility, muscle stiffness, contractures, discomfort, sleep, digestion, and pain.

MT as a Psychosocial Support

Dignifying

Having 1 hour where you are not in your room and you are not having medical stuff done and people aren’t talking to you about taking your pills or other medical things.

For clinicians, delivering MT in hospices was thought to portray a message that patients are more than their illness. Clinicians expressed that opportunities for families and staff to have massage were viewed as a source of acknowledgment. Massage was seen as humanizing because it transcended individuals’ experience, expectations, and roles—as a patient, nurse, or caregiver—and gave them a moment to just be.

Interconnection

I look forward to the physical connection with somebody and somebody touching you. It just feels so nice to have someone touching you, helping you with certain issues or problems that you have in certain areas. You feel like you’ve been treated special for the hour.

Clinicians perceived there to be isolating factors associated with being a palliative child or a caregiver of a palliative child that could make the physical and social connection of receiving massage an appreciated form of care. Many children with congenital palliative conditions are nonverbal—and touch was thought to be an important means of communication for some of these children. Massage was appreciated for being a form of connection that did not require words. From a therapeutic relationship standpoint, enjoying the presence of a kind, respectful, and attentive caregiver, who was anonymous/not in one’s family circle, was thought to be a connection that both children and families might appreciate. For children with a diagnosis of cancer in their teenage years, clinicians expressed that their touch needs may change as they begin to individuate and long for physical touch and connection from someone other than their parents. As such, the massage practicum provided an opportunity to ask for, consent to, and engage in touch in a way that was kind, compassionate, and safe and respected their boundaries.

Intraconnection

It’s also a way of just reintegrating all my pieces and I’m not sure if grounding is the correct word for that, but it’s like I can get back into the world and it’s okay again.

Clinicians described massage as a meditation, an opportunity to go inward and connect with one’s physical and emotional self, to be present, defragment, and/or to become more self-aware. Clinicians wondered if massage might play a role in self-acceptance or integration—particularly when a disease and its symptoms are particularly distressing and affect one’s sense of self. Massage was thought to provide a moment for clinicians to experience their body, connect inward, and cope in a way that was meaningful to them.

Providing Rest/Relaxation

I’ve seen how it helps people that are going through a very stressful time or a stressful day or just even a stressful afternoon come back from there just looking like wow, like wow! That is exactly what I needed and they can get right back into it and have a better perspective.

Clinicians believed massage created an opportunity for rest, a physical break, or a moment of deep rest/relaxation for those in the hospice. Clinicians hoped that these moments would support caregivers to be better caregivers, refresh them, help with anxiety, or even provide moments of relief from worry.

Nurturing/Comforting

We had an ambulatory child hunched and in obvious discomfort. After the massage, it was like his bones had just melted a little bit and he was just so comfortable (joyful tone). It was just a delight to see in him. It didn’t last long, maybe a couple of hours, but in his skin I’m sure that felt like a lot. For me as an outsider of that whole scenario, it was so pleasurable to see him in less discomfort.

Massage therapy was seen to be a service that was comforting, nurturing, and caring for people. Clinicians valued massage as a means to acknowledge one’s own needs; to gift the service to others; to support others in receiving the service; to witness others embody a calmer, more peaceful and rested state; and to provide a time for someone to be handled in a way that is kind and compassionate. Massage was likened to a hug, a hand on one’s back, or a gentle nonverbal acknowledgment. Clinicians were comforted by seeing colleagues, children, and families benefit from massage and hoped that parents were also comforted by being able to witness their children being treated as special.

DISCUSSION

Practical Support

This phenomenological inquiry offers the insight of 6 clinicians on the value that MT services contributes to the wellness of children in care, families, and staff within a pediatric hospice. The hospice’s family-centered, holistic values that aim to optimize QOL and support the entire care team at CPCH foster an innovative, open, and inclusive environment well suited to incorporating a range of safe complementary services alongside standard medical care. Other authors have found similar positive attitudes toward MT in adolescent psychiatry22 and adolescent inpatient oncology,23 in children struggling with chronic pain,24 and for children undergoing hematopoietic cell transplantation.25 This study closely follows only 1 other study that has explored MT within a dedicated pediatric hospice.14

Supporting a MT student practicum promotes financial and logistical accessibility for parents, children, as well as the formal care team. Given the potential mobility and frailty issues of children and the financial and logistical barriers for parents whose primary job often becomes providing their child’s daily medical care, MT becomes an invaluable gift that is largely inaccessible without support.6,7

In this study, clinicians valued MT as a tangible activity that encouraged self-care and reflected the organization’s commitment to supporting both the physical and psychosocial wellness of employees, caregivers, and children. Empowering children, providing choice, and promoting education, learning, fun, growth, and self-care activities that enhance QOL are important in hospices. Self-care is considered an essential strategy in improving health outcomes, stress levels, as well as protecting the overall well-being of parents of children with cancer.5 Physical and psychosocial self-care is important for clinicians’ resilience, coping, and ability to effectively provide care.26

Physical Support

The clinicians in this study valued MT for its role in supporting staff and caregivers’ physical comfort, as well as for injury rehabilitation and injury prevention. Workplace MT initiatives have previously been received positively and found to reduce pain and muscle tension and to increase relaxation.27,28 Physiologically, scalp massages twice a week have been shown to result in reductions in blood pressure, cortisol, and norepinephrine.29 One MT research review found that MT can lead to improvements in a variety of pains.30 Based on the comments of the clinicians in this study, it is likely that the value placed on MT for long-term improvements to clinicians’ personal injuries reflected a series of treatments, self-care activities, and perhaps treatment from various modalities both inside and outside of the hospice.

The clinicians all believed that MT could comprise 1 mode of support in caring for children’s physical needs and symptoms in the hospice. Other studies have confirmed the positive impact that MT may provide children. Physiologically, MT in hospitalized critically ill children significantly improves the stress response associated with acute illness.31 Children in hospice have demonstrated a 24-hour reduction in the need for pain medication after MT.14 A recent review on MT found that it helps children’s anxiety, pain, nausea, depression, and stress.32 A pilot study targeting children with cancer found that massage benefitted sleep.23 This corroborates studies on children with chronic pain who experienced improvement in a range of symptoms after MT.24 In adolescent and child psychiatry, MT improved sleep and relaxation.22 Abdominal massage has been shown to provide a significant improvement for most children with constipation.33 Successfully managing children’s symptoms is essential to children’s QOL in hospices and has a positive influence on parents’ long-term bereavement outcomes.34

Psychosocial Support

This study found that MT in the hospice was perceived to be a way of fostering dignity, connection within oneself, and connection with another and providing valued moments for relaxation and comfort. Medical care that values therapeutic relationships and intimacy and promotes patient health and well-being through and despite suffering as in the case of palliative care is deeply dignifying.35 Parents have previously expressed a similar appreciation for in-hospital MT for their children, describing it as a gift and a means to attend to the whole person.25 Psychiatric nurses have also expressed a belief that MT may support adolescents by providing them with comfort and reassurance.22 That MT is comforting to both witness and receive is congruous with the findings of other studies evaluating the impact of MT in both pediatric hospices and hospitals.14,25 Thus, MT in hospices provide a measure of psychosocial support for some children, families, and hospice staff amidst challenging circumstances.

This study is unique in that the clinicians also expressed that making time for themselves, receiving MT, and being given access and permission to use their breaks to receive treatment made them feel supported, appreciated, and valued. They hoped that parents experienced some of the same psychosocial benefits that they and their children might receive and that it would be a gift that would honor them.

Considerations and Limitations

This study has several limitations. Having more than 1 researcher code the data would have contributed to improved rigor in the interpretation of the study’s outcomes. All participants were recruited from CPCH, limiting the generalizability to other settings. Given the participants’ familiarity with MT, they may have had a preexisting and positive bias toward MT. Given the descriptive phenomenological methodology used in this study and the desire to accurately reflect the perceptions of clinicians, the study may have benefitted from delayed member checking of final themes (as opposed to early member checking and mostly transcript/concept agreement).

CONCLUSION

This study offers a descriptive analysis on what clinicians value in the provision of MT in a pediatric hospice. However, many questions remain unanswered that are relevant to this inquiry. For example, future research would do well to understand reservations in using MT. Furthermore, future work should address touch preferences as children age. More should be done to understand the views of parents, students, and staff who participate in these programs.

The clinicians in this study expressed considerable gratitude and positivity about having a MT practicum at CPCH, which has successfully provided weekly treatments to children, their families, staff, and volunteers since 2011. All clinicians recognized that individuals needed to value touch as a starting point to understand what value MT might provide in a hospice. Providing MT at CPCH offers parents and children access to a service that would otherwise be financially and logistically inaccessible in their communities. Having MT in the hospice acts as a reminder and practical opportunity for staff, children, and families to engage in self-care activities. Clinicians valued MT as a means of supporting holistic wellness—or for its perceived influence on physical and psychosocial variables. Physically, MT in a hospice is valued by clinicians for its potential to support and prevent injuries as well as its potential to help manage children’s symptoms. Psychosocially, MT was valued for being dignifying, for fostering connection between people and within one’s self, for creating an opportunity for rest/relaxation, and for being a source of comfort to individuals. Massage therapy was seen as valuable for supporting the wellness of staff, children, and families at CPCH.

Acknowledgments

The authors gratefully acknowledge CPCH and their staff and clinicians for their support and contributions to this inquiry. They would also like to thank the West Coast College of Massage Therapy and clinical supervisor Anne Horng, RMT, for leading the MT clinical practicum at CPCH. They acknowledge Editage for scrutinizing the language components of this article.

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Keywords:

caregiver; hospice; massage; pediatric; psychosocial; qualitative

© 2019 by The Hospice and Palliative Nurses Association.