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Unspoken Challenges: Sexual Health in Sexual and Gender Minority People With Multiple Sclerosis

Guest editor Marcia Finlayson, PhD, OT Reg (Ont), OTR, is a professor in the School of Rehabilitation Therapy at Queen’s University in Ontario, Canada. She began her career as a clinical occupational therapist and shifted to a research career focused on generating and sharing knowledge to help people affected by multiple sclerosis (MS) lead healthy, meaningful lives with control over their participation in daily activities, at home and in the community, particularly as they age.

For this special issue on caregiving in MS, she chose to interview Kenneth Pakenham, PhD, emeritus professor of clinical and health psychology at the University of Queensland in Brisbane, Australia. For more than 4 decades, he has investigated the psychological well-being well-being of caregivers, including coping mechanisms and innovative interventions to improve their quality of life. His work is dedicated to applying positive health frameworks to chronic illnesses and to empowering caregivers and individuals with MS.

Together, their expertise illuminates the multifaceted challenges and opportunities in MS caregiving research and understanding.

“…care implies a motivation to look after, to nurture, to love, to have compassion for. Once triggered, 

. If you care, you can do almost anything.” ~Kenneth Pakenham, PhD

 As you think back over your extensive career in caregiving research, particularly in the MS space, where are the biggest gaps in our knowledge? Where could early-career researchers focus?

 I’ve got 6 knowledge gaps I’d like to take you through. The first is that I don’t think we know very much about how MS carers operate in the broader interpersonal context of caregiving that involves the person with MS, the family members, close friends, neighbors, and health care professionals in the broader community. The critical issue here is that most of our research is focused on the caregiver, as if the carer were separate and independent of this crucial interpersonal context in which the caregiver operates. At [the] very minimum, we should be including the person with MS when we conduct research on MS carers. We know caregiving is profoundly interpersonal and that living with a loved one with a degenerative, chronic illness entails an ongoing interactive adjustment for the carer and the person with MS, yet in our psychosocial research, we focus on either the person with MS or the carer as if they were independent of the interactive dyadic processes that are occurring. For these 2 people, the person with MS and the carer, their lives are intertwined in various ways, and to ignore that crucial interactive influence is very, very limiting in terms of research, our understanding, and how we can move forward.

 Listening to you summarize and identify this gap that we’re not studying, I thought “the family unit,” but it’s often more than just the family. I think most of us would acknowledge we depend on our family, but we also depend on our friends, and some of those are closer and some of those are more distal.

 I think what you’re talking about is beyond dyadic data analysis, but I still think dyadic data analysis is really important because there is that critical element around the person with MS and their primary carer; the mutual influence here is really important. Going beyond that—to your point about understanding the broader network—this can be achieved through our social network data analytic approaches that have been developed and refined particularly over the past decade or so. I think both dyadic data analytic approaches and social network data analytic approaches will help us understand the role of carers in relation to the person with MS and other people that can assist, and this will inform interventions at the family level, the individual level, and the broader community level.

 I totally agree. I think that is such an opportunity moving forward.

 The second gap is our lack of understanding of the carer adjustment process. Our focus has been on the function of carers because they play such a critical role economically, socially, etc, in the health care system, but the carer—like the person with MS—has to navigate a process of adjusting to the person’s illness and how that affects them in the family. I don’t think we really understand a lot about that adjustment process. To some extent, I tried to get at it by investigating the meaning-making that carers go through in their attempt to accommodate this huge change to their lives: A loved one with a degenerative neurological disorder that changes over time, and they have to keep readjusting. I think that’s a gap where we could understand a lot more. I think it’s a balance: focusing on the function of carers—what they do and how important their role is—but also investigating and understanding how they adjust.

 And as part of that adjustment, how do they learn to take on those new roles or activities that they’ve never had to learn, they’ve never had to do before? Researchers have described all these functions that caregivers perform, yet we haven’t asked how they develop the skills necessary to be able to take on those additional functions.

 It is huge. But sometimes we forget the care element of the carer and caregiving. The critical word here is “care.” And care implies a motivation to look after, to nurture, to love, to have compassion for. Once triggered, it becomes the powerhouse, the engine. If you care, you can do almost anything. If you care, you’ll learn how to administer an injection. If you care, you’ll learn how to deal with incontinence. Caring is the critical element. Harnessing that positive, caring drive and related values that the person has is empowering across different care contexts— whether it’s because they’re in the family and it’s more to do with the family context of caring, or whether it’s a friend and it's more to do with the friendship context of caring, or whether you’re a neighbor and it’s more like a next-door neighbor and part of the community notion of caring for someone who is vulnerable.

Caring is the critical element. Harnessing that positive, caring drive and related values that the person has is empowering across different care contexts...

 I think that’s a really profound reminder, because we don’t think about that or write about that very much. Honestly, I can’t think of papers that have specifically addressed that in the MS caregiving literature in the way in which you’ve just talked about it.

 I learned about this through my research on young carers because young carers are not intellectually shaped by the health care and medical systems. When you care for someone, when you love someone, you don’t think of it as anything but caring.

My third knowledge gap is reward. In the review that you and your colleague published, you identified that very few papers over the [past] 29 or 30 years had examined or investigated the positive aspects of caregiving. This is really interesting because, if you think of caregiving, there are costs but there are also rewards. There’s incredible fulfillment, there’s an enhancement of meaning in life, [and] there can be an enhancement of relationship through caring.

 Definitely, and it’s often quite intangible. I’m not sure people are always able to articulate what that looks like or how that feels, but it’s so important to be able to support people to achieve those rewards fully because it keeps them engaged in caregiving.

 This is [what] keeps the engine ticking over, and it produces growth, it produces creativity, it produces clever problem-solving. It produces ingenuity, ways to get around difficult, practical things that pop up because the person has a disability.

The fourth gap is in relation to intervention and, in some ways, I’m sort of paraphrasing the findings from your review, and that’s a nice dovetailing of our knowledge. One of the deficits you identified in your review—and for me, this is really important—is the lack of intervention research on carers. To be quite frank, after working in this field for 40-odd years, I started to feel guilty that I had done all this research refining theoretical frameworks around caregiving and developing measurement instruments, and although this research is important and it contributes to science and our understanding of caregiving in MS, all the time there are carers and people with MS struggling with their loss. What am I doing for them? Although my research is producing understanding and advances in scientific knowledge, I nevertheless have a responsibility, an ethical and professional responsibility as a researcher to deliver something tangible that will make a difference to the lives of people with MS and the lives of those caring for people with MS.

I...have a responsibility, an ethical and professional responsibility as a researcher to deliver something tangible that will make a difference to the lives of people with MS and the lives of those caring for people with MS.

I think the importance of intervention research should be highlighted, so I’d like to talk about the way this might move forward. I’ve developed and published research on a resilience training intervention [REsilience and Activities for every DaY (READY) for MS] over the past 10 years. The focus has been on the person with MS in terms of the delivery of this intervention, but in delivering the group, face-to-face intervention through frontline MS support services, quite often the carer accompanied the person with MS because of disability and practicality issues. What we’ve found is that having the carer accompany the person with MS to the intervention, anecdotally, they reported greater gains because both were learning a common language about coping strategies and how to better manage the illness and the adjustment process. They had a common language and a common set of skills. Why wouldn’t you deliver the same thing to both people?

 Even [in] some of the early caregiver intervention work I did, one of the pieces of feedback we received from caregivers is that they wanted to have the person with MS in some sessions.

 And I think that culturally, this is actually more important in some cultural contexts than others. We’ve delivered and evaluated the [READY for MS] intervention in Italy, Greece, the UK, Australia, and currently it’s being translated for delivery in Germany. Anecdotally, in the Mediterranean cultures, the presence of [the] carer—which was often a family member—was seen as really important because of the close community and family ties. I think that intervention is very important and, where possible, it should include at least the dyad and even be extended to other critical people in the network.

 You talk about the cultural impact of families [and] what’s expected, and I think about my experience in North America [where] families tend to be spread out, and yet they are still providing care, often from a distance. It’s more complicated. Do you see potential for dyadic interventions supported by technology to be able to bring families together to receive these dyadic interventions, even if they’re not located in the same place?

 Yes, definitely. By way of illustration, this resilience training intervention [READY for MS] presents generic resilience building strategies. They’re applicable to any person, whether you have a chronic illness or not [and] whether you have a caregiving role or not. The material is suitable for anyone to obtain information, gain understanding, and develop [resilience] skills. In the Greek version [of the intervention], they delivered it as a group program but via real-time video conferencing. The carer wasn’t necessarily in another location, [and] sometimes they were all at the computer. Anecdotally, some of the people with MS had their carer with them and were engaging in the material [together]. I think it’s entirely feasible to use digital technology for the delivery of interventions that are suitable for carer and person with MS, even if they live separately.

 The fifth knowledge gap is around carer diversity. If you think of people with sexual diversity, gender diversity, ethnic/racial diversity, if you think of minority groups like that, they typically have difficulties in accessing with equity health services where they’re not stigmatized or discriminated against. This is a serious problem. I’m a sexually diverse person. I identify as a gay man, and I sometimes have difficulties in getting health services where I’m not discriminated against or stigmatized. This is a real problem. If the carer is trying to support a person with MS, the couple may in fact be a same-sex couple, or it might be that the person with MS is heterosexual but the carer identifies differently and, because of this relationship, the person with MS [is] possibly more likely to have difficulties in accessing health care services.

 We’re going [to] do better in this area. We have to, we have to because we can’t leave groups behind. There’s too much at stake here for people with MS [and] for families affected by MS.

 I agree. Somewhere, somehow, someone needs to voice the truth and the reality that not all people with MS are heterosexual, White, middle-class people, and not all carers have that demographic characteristic. We do have diversity.

Somewhere, somehow, someone needs to voice the truth and the reality that not all people with MS are heterosexual, White, middle-class people, and not all carers have that demographic characteristic. 

The sixth knowledge gap is around young carers. I’ve done quite a bit of work in this area. I think we know quite a bit about the tasks young carers do. A colleague and I developed a measure that’s generic to young carers, but we’ve used it in studies of offspring of parents with MS [to] identify the tasks that these young people are undertaking. Many of them are undertaking caregiving tasks that are typical of what the adults undertake, and, sometimes, the tasks that these young people are undertaking, you could question whether young people should be undertaking some of the…quite personalized health care tasks. Nevertheless, we do have a reasonable amount of knowledge about the care tasks these young people are undertaking. We also have a reasonable understanding of how these young people experience the process of caregiving in the family. We’ve identified some of the risks and protective factors that influence the child’s adjustment as they are growing up with a parent with MS and having to take on various caregiving roles in the family. And while those knowledge areas can be extended, I think we are at the point where we can start seriously looking at interventions for young carers, for example, interventions that are specifically for the young person and interventions that might be more family focused because of particular needs. A whole family approach may be necessary and appropriate in some contexts, or simply just a young carer-focused intervention.

Opportunities in Multiple Sclerosis Care Partner Research: An Interview

Complete Transcript: Opportunities in Multiple Sclerosis Care Partner Research: An Interview

Previous research has shown that users of complementary and alternative medicine (CAM) among persons with multiple sclerosis are more likely to be women and to have a higher level of education compared with nonusers. This qualitative study was performed to explore the motivations linked to CAM use among highly educated women with multiple sclerosis.

The study was based on a phenomenological approach, and 8 semistructured, in-depth qualitative interviews were performed. Data were transcribed verbatim and analyzed through meaning condensation and identification of recurring themes.

Regarding the informants’ motivations for CAM use, 3 main themes emerged: (1) Self-reliance is essential in disease management, (2) conventional health care lacks a holistic approach, and (3) personal experience is the primary guide.

The interviewees wanted approaches to health care that supported their desire to actively participate in the management of their disease. They were critical of the conventional health care system, and they emphasized the importance of letting their own personal experiences, as well as those of others, guide their decisions.

From the Danish MS Society, Valby, Denmark (CSK, LS, ML, JLS). 

 Caroline Storr Krogh, MA, Ballumgade 2, 3; 1753 Copenhagen, Denmark; email: caroline-sk91@hotmail.com.

*CSK and LS contributed equally to this work.

We thank the women interviewed for the study and the Danish MS Society.

 The authors declare no conflicts of interest.

Multiple sclerosis (MS) is an incurable, chronic autoimmune disease affecting the central nervous system and resulting in various symptoms and impairments. Medical treatment may slow disease progression or reduce symptoms, but it is not always effective and may be associated with severe adverse effects.

 To supplement conventional treatment and rehabilitation, many individuals with MS turn to complementary and alternative medicine (CAM) to relieve symptoms and strengthen the body’s ability to manage the disease.

 No precise definition of CAM exists. We follow the overall interpretation as presented by the US International Center for Complementary and Integrative Health suggesting that CAM covers health care approaches that are not typically part of conventional medical care or that may have origins outside of usual Western practice (eg, 

, reflexology, magnet therapy, cannabinoids, certain diets).

Studies among individuals with MS find CAM use at 46% to 59% in Nordic countries and as high as 82% in Germany.

 Some of the most frequently used CAM modalities among individuals with MS in Denmark are natural medicine, dietary supplements, special diets, and therapies such as acupuncture, reflexology, yoga, and meditation.

In most cases, CAM use is not associated with health risks, and recommendations can be made in the area of MS symptom management.

 However, the effects of most types of CAM are not well documented in the MS field, and CAM use may be associated with adverse effects.

 In addition, the use of natural medicines and dietary supplements in combination with conventional medicine may lead to negative interactions.

 Although many individuals with MS benefit from CAM,

 potential risks and related costs should be considered. It is generally recommended that patients discuss CAM with their conventional practitioners, but many do not.

Previous research among individuals with MS found associations between educational level, sex, and CAM use, showing a higher proportion of women and a higher level of education among CAM users compared with nonusers.

 Studies investigating perceptions of and reasons for CAM use among individuals with MS in general

 indicate that dissatisfaction with conventional treatment, a desire to play an active part in disease management, and a desire for holistic treatment are some of the main motivations. However, no previous studies have explored reasons for CAM use specifically among the typical adherents. To improve the dialogue between health care providers and individuals with MS about CAM, knowledge about the common reasons for CAM use is needed. Therefore, this qualitative study explores the motivations that may lead highly educated women with MS to use CAM.

The interviewees were recruited through the official Facebook page of the Danish MS Society, where they filled out a form to register. The inclusion criteria were being a woman, having a bachelor’s degree or higher education, having an MS diagnosis, and using a minimum of 2 CAM treatments during the past year. Of the 8 participants, 5 had bachelor’s degrees and 3 had master’s degrees. As shown in 

, the most-used CAM interventions were natural medicines and dietary supplements, special diets, and various therapeutic CAM methods (eg, acupuncture, healing, craniosacral therapy, “a holistic lifestyle”). Half of the informants also received conventional medical treatment to reduce disease progression and/or symptoms.

In Denmark, studies that do not include biological material from humans cannot be reported to the National Committee on Health Research Ethics. For this study, therefore, no approval was needed. However, the study adhered to the European Union General Data Protection Regulation and ethical principles for medical research as presented in the Declaration of Helsinki.

The study consisted of semistructured, in-depth qualitative interviews that ranged from 35 to 60 minutes. All interviews were recorded and transcribed verbatim. The interviews took a phenomenological approach. An interview guide was developed to structure the interviews, as shown in 

, but the interviewer allowed for the informants’ immediate perceptions to influence the interviews. Interview data were analyzed using a thematic analysis inspired by Attride-Stirling.

Three themes emerged from the analysis regarding motivations for CAM use: (1) self-reliance in disease management, (2) lack of a holistic approach in conventional health care, and (3) one’s own and others’ personal experiences.

Theme 1: Self-reliance Is Essential in Disease Management   

Interviewees used CAM to play an active part in the management of their MS, independent of the conventional health care system. To some extent, they ascribed their ability to navigate alternative approaches to disease management to their educational attainments.

Several interviewees said that playing an active part in their treatment and care was essential. Responsibility for one’s own health was a commonly expressed value and was often identified as a necessary step to avoid being reduced to a passive recipient of health care. Elsa, who had chosen to discontinue conventional MS treatment, said, “People should make an active decision about what they think and believe in, and not just let themselves be dictated [to] by a system. If I had done that, I would just be injecting myself in the leg…. They have just accepted that that’s how the system works and that they ‘are the disease....’ I still have the will and the courage and the energy to fight for a long, good life without medicine.”

Elsa’s opinion reflects a common attitude among the interviewees: Playing an active, decision-making part in disease management is essential to be more than just a patient with MS. Not letting oneself be passively “dictated [to] by the system” was a goal. In her quote, Elsa implies that uncritically following the conventional recommendations for treatment is equal to not fighting for a good life, and that a good life is a life without conventional medicine.

Most interviewees also indicated that taking personal responsibility for one’s life and health requires a critical appraisal of conventional medicine and doctors’ opinions. For example, Ann stated, “I’m not the type of person who goes to the doctor and believes it will help me.… I just think that I can do a lot myself.… I think that we can do other things than what is traditional.… Many people think ‘I’ll just go see my doctor and then he will know what I should do’ and then you receive a pill.” The skepticism of conventional treatment was also reflected in the fact that 4 of the informants had declined conventional medical treatment for their MS.

Several interviewees emphasized that their high educational level was an important factor when making decisions that did not necessarily follow a doctor’s advice. Academic training was an important qualification for navigating the many different approaches to treatment as well as for seeing through conventional recommendations. Denise said, “I was sure as hell not letting him [the doctor] decide that [ie, on use of CAM treatments]. He may be a doctor, but I have studied religion and sports, and I know how much I don’t know. I’m always trying to optimize.… I have used everything from my academic studies to manage well.”

A few informants linked their way of navigating treatment approaches to their ability to search for and assess information in a meaningful way. Hannah, who was a health professional, said, “There must be substance in what I read. I am well aware that I can sit as a health professional and read and interpret an article better than others [with MS].”

Theme 2: Conventional Health Care Lacks a Holistic Approach    

Generally, the interviewees found it important to view body and mind as a whole in the management of their disease. They felt that CAM offers a holistic approach to disease management, and the opposite was true of the conventional health care system. Thus, the lack of a holistic approach led to a loss of trust in conventional health care.

A few interviewees said that they had a satisfactory relationship with their conventional doctor, but most felt that their CAM practitioners provide a more holistic focus and are more present in the consultation. Betty said, “There is more presence with the alternative practitioner than with the doctor.… The doctor is more absent. They do the same tests every time. They ask standard questions.… I get a more holistic treatment [with the alternative practitioner] and take something valuable home with me.”

Part of the appeal of the holistic focus is the integration of care for the mind and the body. Betty also said, “When you take medication, then it’s all about the brain…. If the body is not brought into play, then I don’t think it’s going to work…. The 2 are interconnected more than what is recognized in the Western world…. The body also remembers our experiences and the things we go through.”

Several informants were inspired by the Eastern way of thinking about disease management, which they characterized as more holistic and often encompassing more than conventional medical treatment. Eastern medicine was viewed as ascribing higher value to what patients can do for themselves, without judgment. Denise, who had been treated in a country in Asia, said, “Here I learned about the holistic way of thinking…which consists of different compositions, mental and physical. It’s all interconnected…. The [holistic] doctor never told me what was right or wrong…. He never let me feel that I couldn’t act [like] myself. He believed that what we do for ourselves has an effect.…” Denise later explained how her conventional doctor reacted to her experience with the holistic doctor by calling her experience “mumbo jumbo,” mocking her and laughing. This resulted in Denise losing her regard for conventional doctors altogether.

Similarly, Gina had wanted to discuss whether a certain diet could be beneficial to her health, but this idea was rejected by her conventional doctors, and her impression was that non-Western cultures often have more holistic approaches to health care and would be more open to such a discussion: “I’ve lost a lot of confidence in the system…. Not a single person has been willing to talk about diet beyond what the health authorities recommend. In my experience, some doctors from other countries are more open to new ideas. With Danish doctors, I am met with resistance…. The doctors prefer to look at trials, medicine, placebo.” Doctors in the conventional Danish system were generally described as being closed-minded and unwilling to think beyond official guidelines and recommendations.

The interviewees generally thought that conventional treatment and conventional doctors overlooked their individual needs and the root causes of their symptoms by narrowly focusing on symptomatic treatment, a temporary and inadequate treatment plan. Gina recalled that instead of looking for the cause of her muscle tension she was offered a pill to relieve it: “A pill is just a temporary solution that doesn’t really address the root cause. It just becomes symptomatic treatment instead of getting to the cause of why I have muscle tension…. That kind of treatment, it’s just so microscopic, and there’s a long way [to go] for the treatment to be about me [as a person].”

Some informants related the doctors’ narrow focus on pills to financial incentives from the pharmaceutical industry. Ann said, “There is financial profit in it. Therefore, a neurologist will not consider anything besides pills…. I think because the pharmaceutical industry has such big financial interests that it limits what we are supposed to do and not do.” Hannah also articulated that financial incentives were particular to conventional health care and did not play the same role in CAM: “The whole pharmaceutical industry…it’s all about the money. It’s not the same way in the alternative treatment industry.”

There was generally a more positive attitude toward CAM practitioners earning money from treatments than conventional doctors earning money from treatments. Part of the reason for this was that participants considered CAM practitioners to be generally more invested in their patients’ treatment, giving them higher credibility.

Theme 3: Use of Personal Experiences as the Primary Guide in Decision-making About CAM 

The third theme is that the participants’ decisions regarding the use of CAM are, to a large extent, based on their own or others’ personal experiences. Scientific evidence regarding CAM was generally considered less relevant.

Several informants indicated that their knowledge of alternative forms of treatment is mostly formed by their social communities, personal networks, and, to some extent, social media. Hannah explained, “I’ve been reading in Facebook groups. Some women who have MS write a lot about alternative treatments…. I think people are good at recounting experiences.” Generally, other peoples’ experiences with CAM made an impact on their decisions regarding CAM use.

Several informants stated that their personal experiences are essential when it comes to deciding whether to continue or stop a CAM treatment. For 2 informants, the primary consideration was whether CAM increased their experience of overall well-being. Fiona said, “To me, evidence, in a way, is about well-being…. Perhaps it doesn’t cure MS at all, but just 1 improvement of my condition in some form or other…. That alternative [practitioner], she is just really nice…. You can feel that she is compassionate and feels sorry for me. She cares for me, and I let her.” Celine said, “I started with acupuncture. It made my body relax and feel good. Whether it’s just placebo I don’t know, but it helped…. Maybe it’s just [lying] down for an hour and being taken care of that has an effect…. Just an hour to myself where I am in focus.” The effects of CAM treatments were a sensory experience but also an experience of psychological well-being and care. Thus, CAM treatments were experienced as a form of self-care and as a personal health–promoting treatment.

Fiona believed that knowledge and evidence could never be truly objective, and for that reason, an individual had to rely on their own experiences: “You can seek a lot of knowledge in the places where you want to find the knowledge you are seeking…. Evidence can be fluent when it comes to [the impact of] nature and nurture and the persons that are selected. No study will ever be completely objective. It can never be 100%.… It just has to make sense, the things we do to ourselves. I think it makes sense to do things if they don’t do more harm than good.” While not articulating a strong opinion concerning evidence, the interviewees emphasized the importance of not being dictated to by the rules and characteristics of the conventional health care system.

The interviewees in the present study expressed a strong desire to be an active part of their treatment and care, which they achieved largely through CAM. They were also critical of conventional health care, which they believe places the patient in a passive role and focuses too narrowly on medical symptom management instead of holistic treatment. CAM practitioners treated the whole person and not just the symptoms. These findings are in line with previous findings about individuals with MS and CAM. Mews and Zettl

 found that dissatisfaction with conventional treatment and a desire to play an active part in disease management were the main reasons for CAM use. Similarly, Nayak et al

 found that the most common reasons for using CAM were a desire for holistic treatment and dissatisfaction with conventional health care. Loraschi et al

 also found dissatisfaction with conventional treatment to be a main reason for CAM use, and Skovgaard et al

 found active patient participation to be one of the main reasons for CAM use among individuals with MS who used CAM exclusively.

The present study found that the interviewees mainly rely on their own and others’ personal experiences to guide CAM decisions. In a study exploring CAM use among patients with cancer and patients with MS, Salamonsen

 similarly found that experience-based knowledge, such as bodily experiences, was perceived as a relevant source of knowledge for CAM decisions. Skovgaard et al

 found bodily sensations to be an essential tool guiding CAM use among exclusive CAM users with MS.

Some interviewees in the present study emphasized their academic backgrounds and linked them specifically to their critical stance toward conventional health care and their openness to alternative ways to improve health and well-being. This aspect is not widely present in the literature, which may be explained by the fact that the present study is based on data from a strategically selected sample of informants that allowed this specific perspective to be articulated. As women with high levels of education constitute the typical CAM user among individuals with MS in Denmark, the critical attitude toward conventional research practice may be relevant to understanding their underlying motives and choices as these choices may seem irrational to their conventional providers but represent a logical consequence of their critical approach.

People with a higher socioeconomic position have higher health literacy, defined as the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others.

 Health literacy is also closely linked to empowerment, defined as a process through which people gain greater control over decisions and actions affecting their health.

 The highly educated interviewees in this study expressed a need for self-reliance and not wanting to be “dictated” to by the system, emphasizing a skepticism of conventional health care. However, it may seem paradoxical that the interviewees did not seem to bear the same skepticism toward CAM and its practitioners as they did toward conventional treatment. They felt that CAM gave them holistic treatment for their disease and their well-being. This, combined with a feeling of being ignored, and in some cases having been ridiculed by medical doctors, may explain why their skepticism was mainly directed toward conventional health care. This is in line with previous research: CAM users have a higher level of health literacy,

 and CAM helps some patients feel empowered.

 Understanding the desires to gain greater control over one’s disease and to rely on one’s own experiences may help providers understand their patients’ motivations for using CAM.

Dialogue With Providers and Patient Safety 

The women in the present study indicated that dialogue with conventional providers about CAM could be difficult and was associated with negative experiences. Lack of trust in the conventional system and conventional medicine led a few to discontinue conventional treatment altogether. Gotta et al

 found that nearly half of individuals with MS replaced conventional treatment with CAM, and this could have increased the risk of disease progression. Other studies also emphasize the safety of CAM use among individuals with MS and the importance of continuously improving the dialogue between patient and provider regarding its use.

The literature points to several possible reasons why individuals with MS refrain from disclosing their CAM use to their providers. Gotta et al

 found that 37.6% doubted their physician’s competence, and other studies found that a doctor’s lack of interest in or knowledge of CAM or the individual’s fear of a negative response may also negatively affect dialogue.

 point to the importance of provider and patient reaching a mutual understanding of fundamental beliefs and assumptions about health and treatment, and the systematic review by Petersen et al

 covered possible interactions between herbal medicines and dietary supplements with disease-modifying or symptom-alleviating MS drugs. To strengthen the dialogue between providers and typical CAM users, including those interviewed in the present study, providers should be aware of and acknowledge CAM users’ desires to be treated holistically: to play an active and autonomous role in their disease management and to be seen as individuals and not just as patients with MS. While acknowledging the potential benefits of CAM in holistic MS management, providers could clarify the MS disease process and how conventional medicine works to slow progression.

Providers may also benefit from recognizing that CAM may be embedded in alternative worldviews and acknowledging a patient’s personal benefit from CAM while at the same time talking to patients about possible adverse effects and negative interactions between conventional treatment and CAM. A provider’s greater awareness may serve as a constructive point of departure for dialogue.

The strategic recruitment of interviewees, focusing on female CAM users with high levels of education, dictated a certain limitation in the approach. Although providing insight into the perspectives of typical individuals with MS who use CAM, other themes could have occurred if the interviewees had been selected randomly from a broader sample. Similarly, the use of semistructured interviews produced reflections on specific, preselected issues but may have limited the range and variety of perspectives. Finally, the sample size of 8 was a result of the strategic recruitment, and additional themes may have been found from a larger sample of informants.

Among typical CAM users with MS, ie, highly educated women, active participation in one’s own disease management is essential: Conventional health care places the patient in a passive role and focuses too narrowly on medical symptom management instead of treating the whole person. With CAM, the interviewees found ways to treat their body and mind as a whole and practitioners who approached health care in ways that supported their desire.

Interviewees emphasized their academic background as an important basis for thinking critically about conventional health care and noted the importance of letting personal experiences, their own as well as others’, guide CAM decisions. The interviewees generally did not articulate any strong opinion concerning the value of scientific evidence.

As shown in this study, patients who feel alienated from conventional health care may ultimately discontinue conventional treatment. Moreover, patients may be engaging in CAM that could be harmful or interact negatively with conventional treatment without speaking to their conventional practitioners. To avoid patients distancing themselves from conventional care and to avoid inappropriate use of CAM, providers should prioritize respectful dialogue where patients are encouraged to talk about their use of CAM and are also encouraged to play an active part in the management of their health and treatment.

Reasons for Engaging in Complementary and Alternative Medicine Among Highly Educated Women With Multiple Sclerosis

Up to 50% of individuals with multiple sclerosis (MS) who are prescribed disease-modifying treatments (DMTs) do not take them as advised. Although many studies report on DMT adherence rate, few studies report on interventions involving individuals with MS. The current paper describes the development of an intervention aimed at improving adherence to DMTs among identified nonadherent individuals with MS.

An intervention was developed using an Intervention Mapping approach, recommendations from reviews on medication adherence, and input from individuals with MS. Its content was determined by theories of health behavior (specifically, a perceptions and practicalities approach), empirical evidence collected among the specific target population (an observational “needs assessment” stage [n = 186]), and other studies.

A personalized intervention was tailored to the reasons for nonadherence, uncovered during the observational needs assessment stage, to be delivered sequentially by a neurologist and a psychologist. After the intervention objectives were identified, components of the intervention were set: psychoeducation and ways of coping with adverse effects; modification of unhelpful treatment beliefs (such modifications were found predictive of adherence in the observational phase of the study); improving confidence and self-efficacy; and developing strategies for remembering to take DMTs. These components were embedded within motivational interviewing.

Intervention Mapping was useful in developing an intervention grounded both in the theoretical approach of perceptions and practicalities and in empirical evidence from the literature and the target sample; concurrently, identifying determinants that the intervention did not address. The effectiveness of the intervention—which could potentially improve adherence among individuals with MS—needs to be examined.

From the Behavioral Sciences Department, Ruppin Academic Center, Emeq Hefer, Israel (EN); Multiple Sclerosis Center and Neuroimmunology Unit, Carmel Medical Center, Haifa, Israel (AM); and Rappaport Faculty of Medicine, Technion Institute of Technology, Haifa, Israel (EN). 

: Efrat Neter, PhD, 3 Bait, Ruppin Academic Center, Emeq Hefer, Israel 4025000; 

 Ariel Miller, MD, PhD, has served on a scientific advisory board and received personal compensation/honoraria/grant support for consulting/speaking activities and research from Avanir Pharmaceuticals, Bayer-Schering Pharma, Biogen Idec, Mapi Pharma, Medison Pharma Ltd, Merck Serono, Novartis, Sanofi-Genzyme, and Teva Pharmaceutical Industries Ltd. Efrat Neter, PhD, has no disclosures.

 This work was supported in part by Novartis, Biogen Idec, Sanofi-Genzyme, and Merck Serono.

Multiple sclerosis (MS) is the most prevalent chronic inflammatory demyelinating disease of the central nervous system and is currently incurable.

 Although no treatment fully prevents or reverses the progressive neurologic deterioration, disease-modifying treatments (DMTs) have been shown to limit the number of relapses and prevent new lesion formation, as well as reduce the accumulation of disability

 among individuals with relapsing remitting MS (RRMS). For individuals with RRMS, these outcomes translate into lower risk of relapse, better quality of life, and higher treatment satisfaction. More than a dozen DMTs are now available.

Many of the DMTs require consistent self-administration across time; however, a meta-analysis on adherence to oral DMTs found that by the end of the first year of treatment, 20% of individuals with RRMS were not taking their DMTs as prescribed,

 and 25% discontinued treatment, known as nonpersistence.

 Studies with a 2-year follow-up period reported that only 60% of individuals with RRMS persisted in their treatment.

 Both nonadherence and nonpersistence are associated with lower quality of life as well as with increases in relapse risk, hospitalizations, emergency department visits, neuropsychological issues, work loss, and MS-specific medical costs.

 Notably, adherence rates among individuals with MS are higher than among those with other conditions such as epilepsy, Parkinson disease, and rheumatoid arthritis.

Adherence to DMT poses special challenges. Despite the chronic nature of RRMS and the necessity of long-term treatment, the need for DMTs may be less obvious during periods of disease inactivity. Disease progression can occur with no noticeable symptoms, potentially making individuals with RRMS less concerned about appropriate adherence. Benefits of treatment accrue only in the long term, yet adverse effects (AEs) of medication that reduce quality of life are immediate.

 These are the challenges described in the therapy-related factor in the World Health Organization (WHO) adherence model

; the other factors are social and economic (eg, age, ethnicity, education), health care system (eg, type of insurance), condition related (eg, duration, comorbidity), and patient related. The patient factor in particular is often studied because its components—such as perceptions of illness, medication beliefs, habits in medication, and affective states—are considered potentially modifiable in interventions. In MS, most studies on adherence and persistence have focused on the socioeconomic factor, data on which are easily retrieved from administrative records, and only a few studies have investigated patient-related

Implementing interventions to increase adherence is essential to improve the care of individuals with RRMS. However, despite avid interest in assessing adherence and unravelling its predictors/correlates, few studies have used previous findings to develop interventions. This paper focuses on the development of an evidence-based and theory-driven motivational interviewing intervention—a technique focused on exploring and resolving ambivalent feelings and perceptions—to support individuals with RRMS who are taking DMTs and to improve their adherence rates.

We designed the intervention described here based on theory and prior empirical evidence to ensure the possibility of replication and adoption, if successful. We used the Intervention Mapping (IM) approach

 to structure the process of design and implementation. The study follows recent guidelines requesting more comprehensive and transparent reporting

; this affords a better understanding of the considerations that led to choosing specific intervention components, as well as potential pitfalls in the process. One model for such reporting is a self-management intervention for medication adherence among survivors of breast cancer.

The IM framework is anchored in 2 principles: First, include stakeholders to ensure relevance, acceptability, implementability, and contextual and cultural appropriateness; second, use theories and evidence. The framework includes 6 stages: (1) assessing needs, (2) identifying intervention objectives and behavioral determinants, (3) designing and/or selecting theory-based methods for behavior change, (4) organizing and producing the intervention; (5) implementing the intervention, and (6) evaluating the intervention (see 

, at the bottom of this article). The first 4 stages are described in detail in the rest of this paper.

The first stage, which included data collection, was approved by the Institutional Review Board of Carmel Medical Center (#0061-14-CMC). All participants signed written informed consent forms confirming that they were free to leave the study at any time.

The first stage of IM involves carrying out a needs assessment to establish the extent of the health problem and to identify the determinants associated with the problem behavior. This needs assessment was informed by a review of the literature, using search terms around “DMT,” “MS,” “adherence,” and “persistence,” as well as a search for systematic reviews on medication adherence in general and in MS.

 In addition, we carried out a longitudinal observational study pertaining to the patient factors in medication adherence in the target population of individuals with RRMS. This study assessed medication adherence and persistence among individuals with RRMS taking oral and injectable DMTs in multiple modalities (eg, self-reported; administrative records) and examined the prospective associations among demographic, clinical, and perceptual predictors to adherence and persistence.

 As results from the longitudinal study began accumulating, we adopted the Necessity-Concerns Framework, which evolved into the Perceptions and Practicalities Approach (PAPA).

 This approach to the analysis of patients’ actions in regard to their medication use focuses both on perceptions that shape an individual’s motivation (ie, intentional non-adherence) and on practical issues sometimes beyond a patient’s control, regardless of intention (ie, unintentional nonadherence).

Stage 2: Identify Intervention Objectives

The intervention’s desired results were determined in this stage. Specific goals for enhancing adherence were developed via theory-based PAPA constructs and guided by the specific needs of individuals with RRMS. These goals were dissected to determine particular activities or techniques that could improve adherence. At this point in the process, practitioners can be explicit about the intervention goals and the targeted determinants.

Stage 3: Identify Theory-Based Methods and Practical Strategies

In stage 3, we identified theory-based behavior change techniques and methods that relate to the determinants found in the needs assessment (ie, stage 1) by scanning the literature for studies that offered insights into the determinants specified in the intervention objectives.

In this stage, the identified behavioral strategies are combined to develop the intervention. The development was an iterative process and was informed by feedback from the research team, individuals with RRMS, and clinicians. Two psychologists in the clinic reviewed the content of the intervention. In addition, 5 female individuals with RRMS taking a DMT gave their opinions at 2 decision points. Their primary language was Hebrew (n = 3) or Arabic (n = 2). They were recruited either via their physician’s recommendation or after filling out a survey.

Nonadherence to oral DMT among individuals with RRMS was found to be prevalent. A recent systematic review and meta-analysis evaluated adherence using either the medication possession ratio or the proportion of days covered, which are based on administrative records of persons being supplied with prescribed medication within a given time period. The mean medication possession ratio of >80%— which is considered adherent—was present in 63.5% to 88.5% of individuals with RRMS, and it decreased over time.

 Moreover, discontinuing 1 medication or switching medication in the first year of treatment was common (25%).

We conducted a prospective cohort study to examine adherence and persistence, and their predictors, among individuals with RRMS (n = 186). The study included demographic and clinical characteristics as well as patient-reported medication beliefs, illness perceptions, medication habits, perceived health, and affect (ie, depression and anxiety). The patients were prospectively assessed at 3 time points: baseline, 6 months later, and 12 months later. Using multiple measures (multiple self-reports, military personnel records, and others

), we found that, at different time points, 69.9% and 71% of individuals with RRMS were adherent (with slight variation among medications

) and 64.5% were persistent. This prospective analysis also identified a consistent barrier: the concerns and beliefs held by individuals with RRMS about their prescribed medications,

 specifically those about potential overtreatment and about harm the medications could cause.

Perceptions regarding medication were assessed within the Necessity-Concerns Framework.

 The framework posits that a person weighs the perceived need for treatment (necessity) against the potential harm of the treatment (concerns) prior to deciding whether to take the treatment. Indeed, recent work has identified reasons for intentional nonadherence to include AEs, mild course of disease, and cost

 (however, cost had little relevance for our sample because all were enrollees in a public health system). Another patient-related variable is satisfaction with treatment, which was associated with adherence both in a meta-analysis

Other studies among individuals with MS have found that unintentional nonadherence is also common, often associated with memory difficulties, affective states, and personality.

 Other statistically significant (or marginally significant) predictors of nonadherence or nonpersistence at some measurement point were socioeconomic status, anxiety, habits, and depression.

 These findings, concomitant with variability within the same individual over time

 indicate that ideally, an intervention for an individual with RRMS needs to be flexible to best address different barriers to adherence. 

 lists principal determinants of nonadherence at the patient level identified at this stage.

Stage 2: Identify Intervention Objectives  

The needs assessment identified that while the intervention should address both intentional and unintentional nonadherence, it was more important to focus on intentional nonadherence (ie, medication beliefs). Reducing intentional nonadherence was found to be consistently predictive of adherence in our sample. Retaining flexibility, in case other barriers emerged, was set as a priority. Several determinants of adherence were identified as modifiable targets for the intervention objectives. The intervention needed to help the individual with RRMS:

(1) develop an accurate perception of MS as an illness;

(2) increase knowledge of and accept the necessity of DMTs;

(3) reduce concerns about DMTs and accept the increased importance of DMTs in their life;

(5) increase self-efficacy regarding DMT adherence; and

(6) reduce the likelihood that they will forget to take DMTs.

Although knowledge about MS and DMTs was not found to be directly associated with DMT adherence, we reasoned that increased understanding of MS and DMT could affect beliefs on necessity, harm, overtreatment, and concerns about the medication. We also reasoned that addressing the issue of DMT-associated AEs could increase confidence in managing AEs and also affect concerns and beliefs (eg, around DMTs’ necessity and possible associated harms).

Stage 3: Identify Theory-Based Methods and Practical Strategies  

Many adherence interventions are not grounded in theory,

 although use of theory was found to have a consistent (albeit modest) effect.

 Basing interventions in theory has the potential to increase their effectiveness; this is accomplished by identifying constructs on which to focus, then targeting effective behavior change techniques to address these constructs.

 Our findings in stage 1—ie, that beliefs about medications were prospectively associated with adherence—directed our search for a theoretical framework. This led us to adopt PAPA

 and the aligned behavior change techniques.

Moderator analyses on interventions in medication adherence

—examining whether intervention effects vary depending on intervention characteristics—indicated that delivery mattered: that is, face-to-face interventions administered directly to patients were more effective.

 Content mattered as well: Intervention content that resulted in higher adherence included behaviorally focused and habit-based interventions, but cognitive-focused interventions designed to change knowledge, beliefs, or attitudes resulted in less adherence. Finally, standardized (vs individualized) interventions resulted in higher adherence. Accordingly, we decided on a face-to-face administration, a flexible yet structured modality, and inclusion of information and behavioral content.

Despite the seeming ineffectiveness of information provision in improving adherence,

 we chose to include the information component in the intervention for several reasons. First, providing information on the clinical benefits of DMTs is particularly important for this class of preventive medications. DMTs are beneficial in that they reduce disease activity (eg, annual relapse rate, appearance of new lesions in MRI, accumulation of disability

Tamara B. Kaplan, MD

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