Experiences with Holistic Health Practices among Adults with Spinal Cord Injury

Abstract

Purpose

To explore experiences with holistic practices (HP) by people with spinal cord injury (SCI) in British Columbia, Canada, including the types of HP they access and the reasons they utilize these forms of treatment.

Method

This was a qualitative study of 53 adults with SCI. Participants were engaged in semistructured interviews in focus-group and one-to-one settings. Inductive thematic analysis was used to identify prominent themes.

Results

Eighty-seven percent of participants had accessed some form of HP. They reported a variety of reasons for accessing HP, such as symptom relief and the desire to avoid side effects of conventional therapy. Caregivers and healthcare providers had important roles in encouraging HP. The perceived benefits of HP included physical, emotional, and spiritual components. Barriers to access included logistics, time, and financial constraints. Participants frequently mentioned the use of marijuana as a form of relaxation and pain relief—this was a surprise finding because marijuana is generally not considered a form of HP.

Conclusion

Eighty-seven percent of the participants in our study were actively engaged in various efforts to improve their health, including the use of HP. Reasons for accessing HP were based on a desire to improve mental, emotional, and physical health as well as to provide hope. Participants chose HP to alleviate pain, boost the immune system, gain strength, improve physical appearance, enhance relaxation, improve mood, feel empowered, and more. Rehabilitation professionals may wish to inform themselves of the range of products and services incorporated in the HP spectrum, and of their potential benefits for SCI patients.

Keywords

alternative complementary rehabilitation Holistic spinal cord injury (SCI)holistic practices (HP)

Introduction

People living with spinal cord injury (SCI) experience many forms of healthcare. Immediately following their injury, they come into contact with acute hospital care, usually in an intensive care unit. They generally receive various forms of rehabilitative therapy, treatment for depression, and some in-home care. This pilot study examines the interest in and access to holistic health practices (HP) among those living with SCI in British Columbia's (BC's) Lower Mainland.

Often known as “complementary medicine” or “alternative therapies”, HP are described and defined as practices that integrate the mind, body, and spirit. Furthermore, HP are typified by¹ a view of health as a positive state, not merely the absence of disease; a concern for the individual's responsibility for her/his own health; an emphasis on self-care, health education, and self-healing; a relationship between the provider and the client that is relatively open, equal, and reciprocal; a concern with how the individual's health reflects familial, social, and cultural environments; and an openness toward using natural “low”-technology and nonWestern techniques.

HP encompass two types of holistic forms: those performed with a health practitioner and those performed without. Yoga, tai chi, chi gung, meditation, and related practices, which are carried out without a health practitioner (albeit usually with a teacher), are self-directed HP. Traditional Chinese medicine, Ayurveda, homeopathy, naturopathy, and other systems of holistic medicine are those forms of HP that are largely carried out with a health professional.^{2

5}

This study focuses on experiences with both practitioner-and self-directed HP among people with SCI. Globally, SCI prevalence is on the rise.⁶ The age-adjusted annual incidence of SCI in Canada is approximately 42.4 per million for adults between 15 and 64 years of age, and increases up to 51.4 per million for adults over the age 65.⁶ Motor vehicle accidents, falls, and violence account for the majority of SCIs.^{7

10} Men are more commonly affected (in British Columbia the ratio is 4.4 men to 1 woman),¹¹ as are rural residents.⁸

This study is timely, given that the uptake of HP in North America has been steadily increasing over the past decades. In 1997, 50% of Canadians reported engaging in HP at least once over the preceding year; this number rose to 54% in 2006. Individual spending on HP has also increased, from an average of $93 per annum in 1997 to $173 per annum in 2006.¹² The population of BC has the highest uptake of HP in Canada,^{12

15} with 83% having used some form of alternative therapy at least once in their lifetime. The most commonly used forms of HP include massage, chiropractic care, relaxation techniques, and herbal therapies.

HP use is particularly common among those with chronic illness and physical disability.^{16
17} In one American study, 57% of physically disabled adults reported using alternative therapies, compared to 34% of the general population.¹⁷ Other studies have found that factors such as self-reported poor health status, chronic pain, mobility limitations, impaired ability to carry out instrumental activities of daily living, and depression are all associated with higher uptake of HP. ^13–15,17 Among individuals with physical disability, HP are most commonly used to manage chronic pain, depression, anxiety, insomnia, and headache.¹⁵

Despite these findings, there have been few studies specifically examining people with SCI and the extent to which they use HP for rehabilitation and prevention of further morbidity. Examination of qualitative experiences with HP in this population is especially limited, and no studies have been published on the uptake of HP among the SCI population in BC's Lower Mainland.

Purpose

The purposes of this study were to 1) assess the extent of engagement and interest in HP within the SCI population of BC's Lower Mainland; 2) ascertain current practices and experiences of people living with SCI vis-à-vis HP; and 3) learn why those who are interested in accessing HP are prevented from doing so.

Methods

Participants

Access to participants was facilitated through the British Columbia Paraplegic Association (BCPA), the only SCI service organization in BC. All participants were BCPA members or affiliates. Individuals between the ages of 19 and 65 years were considered for inclusion in the study. Participants were also required to be residents of BC and to have an onset of SCI at least 12 months earlier to ensure stability of condition and psychological functioning.

Participants were recruited by BCPA counselors who knew the large membership well. They contacted people mainly by phone, until a sample saturation of 53 people was reached. We sought out a diversity of participants. BCPA counselors organized the focus groups so that participants were both men and women, and were diverse with respect to ethnicity, age, and socioeconomic status. We interviewed 42 men and 11 women, 88% of whom lived below the poverty line. Sixty-five percent of our sample was of European ancestry; 25% was of Asian ancestry and 10% fell into other ethnocultural groups.

Ethics

Ethical approval for this research was granted by the Ethics Committee of the BC Paraplegic Association. The research was conducted in accordance with the Declaration of Helsinki.

Data Collection

Fifty-three people with SCI were interviewed for this study in both focus group and one-to-one settings. We pilot-tested a set of mostly open-ended questions with five people living with SCI prior to commencing the full interview process. The interviews were conducted in April, May, June, and July 2007. Each participant received a copy of the questionnaire and a description and definition of holistic health (Appendix 1). Each participant signed consent forms, receiving a copy for their records. Interview questions (Appendix 2) served as a guide, and follow-up probes were used as necessary to seek clarification. Questions were divided into three parts: demographic data (including questions on lesion location and length of time with SCI), overall health status, and holistic health practices. In the section on HP, interview questions inquired about the participants' attitudes toward HP, whether they were interested, the types of HP accessed, and reasons for doing so. Interviews took on a conversational tone, in which judgment of participants' behaviors and attitudes was minimized.

Focus groups and individual interviews were held in Vancouver, West Vancouver, and Langley. BCPA offices, community centers, the University of British Columbia, and other community settings provided quiet and comfortable locations for the interviews. We provided nutritious food for all focus group participants as a way of appreciating their contributions to the study. Participants were not paid for their time.

Data Analysis

We used inductive thematic analysis to identify the prominent themes. In addition to audio recording, notes were taken throughout the interview to gather data. Interviews varied between ∼45 and 90 minutes. We listened to the recordings of the interviews four to seven times each. Portions of the interview that were particularly relevant to the study questions were transcribed verbatim.

We found it more instructive to listen to the participants' words because they carried intonation and feeling. This is perhaps an innovation to standard qualitative methodology that transcribes the entire interview, using mainly the written word. Using notes and interview data, themes and sub-themes emerged. For example, a theme was barriers to the usage of HP, and subthemes were the types of barriers and overcoming barriers. Each theme was compared with extant literature, primarily in the area of HP and disability studies. We discussed themes and subthemes with BCPA staff, rehabilitation professionals, and participants. We met with three participants to discuss results and confer with them about the meaning of certain aspects of the data. A particular concern that arose was the inclusion of marijuana among HP by several participants. Those who met with us after the data collection phase encouraged us to discuss the issues of marijuana use and not to discard this finding. Throughout the data analysis phase, we were informed by Quinn Patton's inductive analysis framework.¹⁶

Findings

Participants' Uptake of HP

Of the study participants, 87% indicated that they were already accessing some form of HP. Virtually all the items on our hand-out had been used by many of the participants. Another 11% were interested in learning more about it; this group expressed an interest in gaining more knowledge about HP from unbiased sources. Two percent of the participants stated that they did not believe HP could help them.

Reasons for Accessing HP

Participants listed a variety of reasons for seeking treatment with HP. Many were related to enhancing physical function; for instance, some participants sought out HP to assist with alleviating pain, boosting the immune system, gaining strength, and improving physical appearance. Others hoped that HP would provide mental benefits, such as relaxation and improved mood. Some also felt that engaging in HP would give them a sense of hope and control over their health.

A few participants also commented on HP as an alternative to conventional therapies that mostly focus on pharmacological treatment. Common ailments in this population include urinary tract infections, pressure sores, depression, and insomnia. Participants felt that standard treatments for these conditions were limited in their effectiveness, and wished to access HP in order to avoid the use of chemicals and their associated side effects. Others simply sought a greater range of treatment options. For example, virtually all participants spoke about struggling with depression. Pharmacological treatment for depression was helpful in the short term, but most participants did not wish to continue with more than necessary, given the large amount of medication they were already taking. Thus, they sought out herbs, music therapy, art therapy, and a variety of other HP.

The length of time with an SCI contributed to some participants' decisions to access HP:

“When you're in a chair for a long time you try different things. Part of the reason why I started using other treatments is because I was not getting results from standard advice. Age matters; as I get older, I am more open to trying new things.”

For many newly injured participants, caregivers and healthcare providers appeared to have a significant role in encouraging them to learn about HP:

“I've been exposed to lots. My brother's girlfriend has tried almost everything for bowel, bladder and back problems so she's been really helpful for me to talk to… I've used chiropractic, counseling, dance, music, writing, energy healing, guided imagery, herbal medicine, massage including both Swedish and Shiatsu, nutritional systems, Watsu, myofacial release, and other forms. They have given me better overall health and a feeling of well-being [as well as] decreased pain and increased my strength. I get lots of benefits from relaxation, breathing and stretching. Having more knowledge and information about my own body helps in lots of different ways indirectly.”

“Since I got injured on my snowboard I've been trying anything that I can to get better and my doctor says ‘Go for it!'”

Perceived Benefits of HP

Participants described having a number of physical health concerns that arose from living with an SCI; some of the most commonly cited issues included spasms, low energy, infections, and joint pain. Several reported that HP were beneficial in alleviating some of these problems:

“Holistic health makes me feel better, increases my energy and immune system response and decreases my infections.”

“I have to go to the massage therapist once a week. If I don't, I find that I'm so fatigued I can't keep up. Without it I couldn't go to work. I couldn't go out to dinner with my husband.”

“I get less headaches if I do Pilates and get massage, Shiatsu.”

Benefits of HP extended beyond the physical aspects of health. Many participants also described HP as being helpful for improving their emotional and spiritual well-being, allowing them to achieve a sense of inner peace:

“Holistic health takes me to the zone. It's like being buzzed all the time, naturally. The effects [are] good health, positive attitude, the ability to cope with almost everything that happens, i.e. don't sweat the small stuff and almost everything is small. [It also helps me to be] open to many opportunities that present themselves and to turn challenges and threats into opportunities. The overall effect gives me less stress and more bliss.”

“Healing myself allows me to help others and keep the flow intact.”

Stress relief gained from engagement in HP, in turn, refreshed their outlooks on life:

“Your sense of well-being is increased and you're willing to try more stuff in other areas of your life. All of a sudden you need a new wardrobe! It's like a mobile: you move one thing and everything else gets affected.”

“I'm a totally different person when I use hypnosis and relaxation.”

“Massage and chiropractic. I have to use them. I can't live without it.”

Some participants also found that the approach of HP enhanced their internal locus of control, relative to the effect of conventional Western therapies:

“If you've been using medications you're not in lots of control but when you create your own holistic health you're in more control. Now when I choose to take drugs I make the choice.”

Barriers to Using HP

Participants noted that many barriers to using HP existed:

“The biggest drawbacks are: the time that it takes to do it all; the effort to get there; taking time off work and from family; and spending the money.”

Time was the most commonly cited barrier. People noted that life in a wheelchair is highly structured and that it takes a huge amount of time and energy just to prepare themselves to get out of their homes; daily activities such as dressing and grooming require a great deal of time and effort. Because of the enormous effort just to go from one place to another, making the commitment to HP is difficult. Additionally, the HP themselves can take up a lot of time or require extended periods to produce noticeable changes:

“I could spend 90% of my time doing the healing and then I'd have no time to do my job, see my friends and family and so on.”

“It just bugs me that my health takes up so much time. It's not fun! Massage is enjoyable but when it's that or the opera, which one would I rather choose?”

Cost was another commonly cited barrier. Participants noted that they did not feel that the fees charged by most holistic practitioners were too high, but that this was an out-of-pocket expense that came on top of the publicly funded medical system. Some participants lived below the poverty line and personal finances were mentioned as a great barrier to paying for the amount of HP that many participants would prefer to receive:

“I pay up to $150 per week for these treatments. If you didn't have the understanding and support for this [expenditure] it'd be pretty difficult to keep it up.”

Overcoming Barriers

Despite these barriers, many participants felt empowered to overcome obstacles with respect to accessing HP. These two participants planned to be involved in providing or advocating for increased access to HP for people with disabilities:

“We need more holistic health and I'm going to try to keep helping with that and one day I will run a center which has many different types of Western and holistic health practices in it.”

“I try to get insurance companies and government service plans to cover holistic health treatments. Little by little it keeps going forward. Part of that is educating everyday people. When enough people started asking for brown bread they started baking it in mass quantities. I intervene at the personal and systems levels: micro and macro.”

Very few participants spoke about themselves as victims. They felt capable of changing their lives and improving the situation they were in. One of the participants, a parent living on social assistance, stated:

“Financially, if I have to pay for stuff we find it [the money]. The most important thing is to eat well. It's cheap to buy grains and fresh vegetables. I bake my own bread which has a physio effect. You get into your mantra and it's great for the arthritis. My son goes to a massage therapist. You've got a choice: good health, entertainment, or new clothes. We choose health.”

Several participants mentioned the need to remain positive in light of the challenges they face:

“Holistic health costs me lots of money out of pocket. However through an attitude of prosperity I always find what I need—not always what I want, but what I need.”

Besides feeling individually capable, many participants relied on a strong network of caring people. Several participants discussed the importance of family and friends in helping them take care of themselves in general and in seeking help from holistic practitioners specifically:

“My mom and family are really supportive. Last week, I went probably seven hours to alternative medical appointments and for all those I required somebody else to take me. My father and husband took turns. Normally I'm pretty independent but my health issues are such that I needed help. Now I'm better and I can go on my own.”

Marijuana Use

While the intent of this study was to discuss HP, the subject of marijuana use came up in many of the interviews. Participants noted that marijuana is commonly used in the SCI community. Marijuana provides pain and spasm relief, relaxation, and is also used for recreational purposes. Therefore, for some participants, marijuana was a form of HP.

Some participants noted that marijuana was efficacious in improving their daily functioning:

“…it gets me going. I do my housework.”

Marijuana was also viewed as a favorable alternative to conventional pain medications and was used to avoid side effects associated with other pharmacologic treatments:

“Marijuana works better for me than Advil in terms of pain relief.”

“With prescription drugs I lost my appetite but with marijuana I eat lots.”

At the same time, however, there was discussion of the detrimental effects of marijuana use. In particular, its effect of decreasing users' mental faculties was noted as a significant problem by study participants as well as rehabilitation professionals:

“When I organize meetings in the SCI community, I've noticed that people who were contributing well to discussions are incapable of doing so after they have smoked marijuana. Sometimes they smoke during their lunch break and I have to call the meeting off because nobody is saying anything.”

Discussion

Participants' Uptake of HP

It appears that the SCI community in British Columbia's Lower Mainland is very interested in HP, with 87% of study participants reporting past or current engagement in a range of practices and another 11% expressing desire to learn more about HP. In comparison, a recent survey of the general population in British Columbia found that 83% have used some form of alternative therapy at least once in their lifetime.¹⁹ Past studies have found that 14%-68% of people with SCI access HP, primarily for chronic pain relief;^14,20–23 the higher prevalence found in our study may be attributed to our application of a broader definition of HP and that participants were asked about their use of HP for purposes beyond pain alleviation. Nonetheless, our study found that people with SCI were keen to take care of their health using comprehensive and dynamic forms of self- and practitioner-based care. They wished to be the ones who decided their own treatment patterns and wanted to keep learning more about how to be well, prevent secondary health concerns, and treat illness in addition to their SCI.

Reasons for Accessing HP

Participants' descriptions of their reasons for accessing HP are comparable to findings reported in other studies. While relief of symptoms is a prominent motivation for seeking out alternative therapies, patients also often expect these treatments to improve their overall quality of life by helping to enhance social and spiritual aspects of their well-being, and to allow them to gain a better understanding of their medical condition.²⁴ Another commonly cited reason for accessing HP is dissatisfaction with conventional therapy, either relating to poor efficacy or concerns regarding safety of pharmacological treatments;^24,25 our study yielded similar findings. However, it should be noted that no participants in our study expressed a desire to completely reject biomedicine. Rather, they spoke of HP as supplementary to standard medical therapies, which is consistent with findings in studies of patients with other medical conditions, such as cancer and HIV.^26,27

Some participants, especially those with more recent injuries, mentioned the influence of caregivers and healthcare providers in their decision to pursue treatment with HP. The impact of social networks on uptake of HP has been illustrated in studies finding that users of HP are more likely to have high levels of perceived friend support and to have family members who use and recommend HP.^27,28 Participants' discussion of being encouraged by their physicians to access HP was somewhat unexpected, given that the medical community in North America has typically been reluctant to facilitate open communication with patients regarding use of alternative therapies, due in part to both attitudes of individual practitioners and broader structural barriers in the healthcare system.^29,30 The setting of this study may have contributed to our finding, as medical practitioners in western Canada are more likely to offer and refer patients to HP services, than in other parts of the country.³¹ BC's Lower Mainland has been touted as the Mecca of HP in Canada.³²

Perceived Benefits of HP

While the majority of published studies on HP and people with SCI have focused on efficacy in providing pain relief, our study found that HP has much more far-reaching effects. Participants reported a variety of perceived benefits from engaging in HP, from physical to emotional and spiritual. Indeed, qualitative studies of other patient groups have revealed that HP produces multidimensional outcomes, with patients reporting benefits such as relaxation, increased sense of hope, better emotional coping with physical symptoms, and increased motivation to make positive life changes.³³ In addition, it has been found that, while patients initially seek out HP to alleviate physical symptoms, many gradually shift their focus, as therapy progresses, toward psychosocial issues and concerns about their general health.³¹ The individualized approach of HP and focus on wellness and healing of the whole person likely create an environment conducive to stimulating a wide range of changes, which may be unrelated to the patients' initial physical concerns.

Barriers to Accessing HP

Despite a strong interest in engaging in and learning more about HP, many participants described barriers to accessing them. Several of them spoke about the highly structured nature of life in a wheelchair, and the consequent stresses associated with coordinating activities outside the home, including visits to HP providers. The concerns expressed by our study participants reflect the unique challenges that people with physical disabilities face when seeking out healthcare services. Factors such as poor physical accessibility of healthcare offices, healthcare workers' lack of awareness about disability issues, and insufficient appointment times have been described as barriers commonly experienced by people with physical disabilities, including SCI, when they attempt to utilize the healthcare system.^34,35

The financial cost of HP services was another barrier cited by several study participants. Currently, most HP services in Canada are not covered by government health insurance plans, and even in private group benefit insurance plans coverage is only partial. As such, Canadians spend approximately $7.8 billion in out-of-pocket expenses per annum for HP.¹⁵ On an individual basis, the average annual amount paid out of pocket per user is $173, and this amount has been increasing over the past decade.¹⁵ However, with the rising popularity of HP, there has also been an increase in initiatives to develop medical programs that integrate HP and Western biomedical practices.³⁶ Although the number of integrative health centers in Canada is still relatively small, their widening presence provides an optimistic outlook on the possibility of publically funded HP services in the future.

Overcoming Barriers

Remarkably, in spite of the many challenges that they face, the majority of participants held overall positive attitudes toward overcoming barriers to accessing HP and toward life in general. Results of our thematic analysis suggest that many participants believed strongly in the power of their own choices and behaviors to determine their personal health-related outcomes. This high degree of internal health locus of control is consistent with findings from survey studies of frequent users of HP,³⁷ suggesting that HP nurtures the development of this characteristic or that those who have it are more likely to engage in HP.

Social support was another major factor that study participants mentioned as contributing to their positive attitudes toward overcoming personal challenges and barriers. The issue of social support was described earlier in this paper; for many study participants, the emotional and practical assistance provided by their friends and family played a significant role in allowing them to access HP. This reflects the value of strong social networks in facilitating participation in general among individuals with SCI, a finding that has been demonstrated in other studies.³⁸

Marijuana Use

Although we did not originally intend to include marijuana in our definition of HP, it was frequently mentioned by study participants. Due to the extent of discussion that arose regarding the topic of marijuana as HP, and because it is sometimes featured in studies of complementary or alternative therapy, we decided to include it in our analysis. Participants argued that marijuana is similar to other herbal remedies that have therapeutic effects. Notably, marijuana has been approved in Canada as a medicinal treatment for severe pain and/or other symptoms of epilepsy, severe forms of arthritis, HIV/AIDS infection, cancer, multiple sclerosis, spinal cord disease, and SCI;³⁹ it is therefore a legal and legitimate treatment option for those with SCI. However, there are few studies examining medical marijuana use in Canada. Recent surveys on self-reported use of marijuana in the general Canadian population found that 29% of respondents had used marijuana at least once, with 2% of respondents reporting use on a weekly basis.⁴⁰

Discussions with our study participants focused on the rationale for using and perceived efficacy of marijuana in alleviating pain and improving overall functional ability. Participants in this study reported using marijuana for pain and spasm relief, as well as relaxation. This corresponds with findings from surveys which report that 85% of Canadians who use marijuana for medical purposes do so for treatment of pain or nausea.⁴¹ Several participants remarked on the superiority of marijuana in providing pain relief compared to mainstream pharmacologic treatments. The efficacy of medical marijuana in treatment of symptoms in SCI has been examined in a range of studies. Cannabinoids, the active components of marijuana, have been shown to be potent analgesics in animal models of hyperanalgesia and to have efficacy in treating spasticity^42,43 Self-report studies have rated marijuana as being among the most useful alternative treatments for chronic pain in SCI.²³ However, whether cannabinoids are more efficacious than conventional pharmacologic treatments is controversial, with some analyses suggesting that there is no significant difference.⁴⁴

Marijuana as a treatment modality also sparks controversy because of its associated psychotropic effects. Side effects such as anxiety, sedation, and abuse potential have limited the development and use of cannabinoids as medications.^44,45 Indeed, our focus group discussions highlighted the challenges that individuals with SCI face in attempting to balance their desire for symptomatic relief with side effects that may interfere with their mental faculties. As well, legal issues related to marijuana use continue to cloud the legitimacy of marijuana as a form of HP.

Limitations of this Study

This study has some limitations. Due to its qualitative nature, the results may not be generalizable, but instead may be suggestive for future research. Further, a selection bias should be considered, as individuals who are interested in HP might have been more inclined to participate in this study although invitations were sent out widely.

Future and Related Research

This study focused on HP uptake amongst people living with SCI. Holistic Health and People With Spinal Cord Injuries: Results of a Pilot Study With Canadian Rehabilitation Health Care Providers, focused on rehabilitation providers.⁴⁶ In future we plan to conduct large-scale, multi-method studies examining various health and healthcare aspects of HP uptake amongst those with SCI in Canada.

Conclusion

This exploratory study is the first to examine the use of HP among the SCI population in British Columbia. It thus fills a void in research on adults with SCI, whose personal experiences with HP have seldom been explored. This study reveals that our participants are very keen to improve their health status, and have derived a great deal of satisfaction from standard treatment. Since they deal with persistent and chronic health problems, they are motivated to expand their treatment toolkit. Participants showed that they have moved beyond the realm of publically insured services in order to treat their health concerns and increase their sense of wellness. They impressed us with their inspiring sense that they can live full lives with SCI. Most of them felt that HP played a significant role in enhancing their well-being.

The results of this study suggest that rehabilitation professionals may wish to inform themselves of the range of products and services incorporated in the HP spectrum, and of their potential benefits for SCI patients. Ultimately, rehabilitation professionals seek optimal health status for their patients. Further studies will help elucidate the place of HP in setting a higher standard of care for people with SCI.

Author Contributions

Conceived and designed the experiments: FMS. Analyzed the data: FMS. Wrote the first draft of the manuscript: FMS. Contributed to the writing of the manuscript: FMS. Agree with manuscript results and conclusions: FMS. Jointly developed the structure and arguments for the paper: FMS. Made critical revisions and approved final version: FMS. Author reviewed and approved of the final manuscript.

Footnotes

Acknowledgments

We would like to thank all the study participants who kindly shared their time and ideas. We also acknowledge the BCPA counselors who helped organize focus groups and interviews. Rajak Randhawa, Research Assistant, helped to prepare the citations for the final version of this paper.

Appendixes

Appendix 1: Description of holistic health practices.

Often known as “complementary medicine” or “alternative therapy”, holistic health involves the whole person (body, mind and spirit) through integrating conventional and complementary therapies to promote optimal health and to prevent and treat illnesses. It is an approach to life and considers how individuals interact with themselves and with their environments. People can use holistic health approaches themselves or with the instruction of practitioners and teachers. These include but are not limited to •

Alexander technique

•

Aromatherapy

•

Ayurveda

•

Biofeedback

•

Bodywork

•

Chiropractic

•

Counseling

•

Dance/music/art/writing therapy

•

Energy healing (Reiki, therapeutic touch, laying on of hands, etc)

•

Feldenkrais

•

First Nations' medicine

•

Guided imagery

•

Herbal remedies

•

Homeopathy

•

Hypnosis

•

Iridology

•

Massage (Swedish, Shiatsu, etc)

•

Meditation

•

Nutrition (macrobiotics, vitamin and mineral supplementation, etc)

•

Reflexology

•

Sound healing

•

Tai chi/martial arts

•

Traditional Chinese medicine (acupuncture, acupressure, Feng Shui, herbs, massage, nutrition, etc)

•

Trigger point

•

Yoga (Hatha, Pranayama).

“Holistic medicine encompasses all safe and appropriate modalities of diagnosis and treatment. It includes analysis of physical, nutritional, environmental, emotional, spiritual and lifestyle elements. Holistic medicine focuses upon patient education and participation in the healing process.” (American Holistic Medical Association)

Appendix 2: Interview questions. 1.

What information do you have about holistic health practices (HP)?

Do you think people in the SCI community in general are interested in HP?

In your view, what percentage of the SCI community in the BC Lower Mainland is interested in HP or has engaged in HP at least once?

Have you ever accessed HP? If so, what forms of HP have you accessed and what were your main reasons for doing so?

a) What were the effects of engaging in HP? b) Did you experience any benefits? Please describe. c) Any drawbacks? Please describe.

Have you accessed HP in the past six months?

Does your doctor know that you access HP? If so, what is her/his attitude toward this?

Would you encourage people with SCI to engage in HP more than they currently do?

What are some of the barriers to accessing HP in the SCI community?

10.

Is social support a factor in accessing HP in the SCI community?

11.

Would you like to know more about HP?

12.

Would you be interested in participating in a follow-up study on HP? If so, what do you think it would do for you?

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