Abstract
Background:
The rise in complementary and alternative medicine (CAM) use is well documented. Surveys provide varying estimates of the prevalence of CAM use. Qualitative research has explored individuals' decision-making regarding CAM. This study aimed to examine the family as a context for beliefs, decision-making, and dialogue about CAM.
Methods:
Families were recruited via the Avon Longitudinal Study of Parents and Children. A subsample of CAM users was targeted using purposeful sampling. Focus groups and interviews were conducted with 15 families and the data were analyzed thematically.
Results:
Family understanding and beliefs about CAM: CAM was understood as treatments provided outside mainstream care, offering a more “natural” and “holistic” approach, tailored to individual needs and overlapping with wider healthy lifestyle practices. Hierarchies of acceptability of CAM: Physical and “mainstream” therapies were widely supported, with “fringe” therapies producing the most polarized views. There was a belief particularly among fathers and young people that certain therapies rely on “placebo” effects and their value was contested. Types of CAM users within families: Family members were predominantly “pragmatic” CAM users, with “committed” users (all mothers) characterized by deeper philosophical commitment to CAM and skepticism toward conventional medicine. Family dynamics of CAM decision-making: Mothers tended to “champion” CAM within families, while not determining family CAM use. Fathers largely positioned themselves as lacking expertise or skeptical of CAM. Young people were beginning to articulate independent and more critical views of CAM, some directly challenging their mother's perspective. However, all families shared openness to CAM as part of broader beliefs in proactive healthy lifestyles.
Conclusions:
Family focus groups and interviews allow a window on beliefs, decision-making, and dialogue about CAM within families, illuminating the CAM “champion” role held by mothers, and young people's developing autonomy regarding health beliefs and decision-making.
Introduction
While surveys provide evidence on the prevalence of CAM use, qualitative research has explored the “Hows?” and “Whys?” of decision-making about CAM that surveys cannot access. 12 Qualitative studies suggest that reasons for CAM use include a range of “push” and “pull” factors. “Push” factors include dissatisfaction with conventional care and perceived harmful effects of conventional treatments; “pull” factors include desire for more holistic and “natural” approaches, and greater philosophical congruence with CAM. 13 –15 Users have distinguished CAM as either “treat” (an enjoyable luxury for no particular health need) or “treatment” (to relieve, cure, or prevent health problems). 16 The use of CAM can be a process of seeking meaning in one's illness and regaining or exerting control over one's health and treatment decisions. 15,17 While some of this qualitative research has been with general population groups, 16 the experiences of patients with cancer using CAM have received particular attention. 18 –23
With regard to parents' decisions about using CAM for their children, parents may exercise more caution in choices concerning their children's health compared to their own, preferring to consult established CAM practitioners than using over-the-counter and home remedies. 24 Parents may feel more strongly dissatisfied with conventional health care for their child than for themselves, which may influence choices to use CAM. 25 Qualitative research on parents' reasons for using CAM for their children has found reasons similar to those for adults: for example, concerns about side-effects of conventional treatments and poor experiences of medical encounters. 15,26 Where a child has a serious and potentially life-limiting condition, CAM use may be part of demonstrating that one is a “good” parent, acting as advocate and co-ordinator of their child's care. 27 Qualitative research has supported survey findings that mothers are key decision-makers regarding CAM use for their children. 26
Little is known about the degree of influence children have in family decisions about CAM use. Parents often lead health care decisions on behalf of their children, but the role played by children and the extent of parental autonomy is debated. 28 Despite calls to give children greater voice in health care decision-making, 29 children may rarely be involved in choices regarding their own health. 30 Adolescents may begin to have more independence in health decisions. Qualitative research with Canadian adolescents revealed a certain amount of autonomy, with the young people making decisions about CAM based on their own personal beliefs and desire for control over their health and lifestyle. 31
This body of qualitative research on CAM use reveals two key findings that are built upon in this article: first, that mothers are key decision-makers for CAM use for children; and second, that adolescents may be developing greater autonomy regarding decisions about CAM use. As far as the authors are aware, there is a lack of research exploring the family unit as a context for decision-making about CAM, a surprising gap given that the family is a primary setting for health decisions. It has long been recognized that many health-related decisions and practices never reach the attention of formal health care systems. 32 Additionally, patients often do not disclose their self-care, including CAM use, to health professionals because of concerns about their response. 33 There was interest, therefore, in the family as a site of decision-making about CAM, including informal self-care using CAM products as well as practitioner contact. There was particular interest in the family dynamics of these decisions, when young people are at the age of making increasingly independent choices about health that may or may not encompass their parents' preferences and beliefs.
The qualitative study reported in this article was a substudy within the Avon Longitudinal Study of Parents and Children (ALSPAC), a large epidemiological cohort study of family health in Bristol (southwest England). 34 It includes around 14,000 children recruited while their mothers were pregnant during 1991–1992. Self-completion questionnaires are sent regularly to the mother, partner, and child and include questions about CAM use, from the mother's pregnancy to currently. Preliminary (unpublished) analysis of this quantitative data revealed that 16.4% (2300) of the mothers had used CAM during pregnancy (most commonly herbal medicine, followed by homeopathy), and 6.0% (671) of children had used homeopathy at age 18 months. However, these data do not provide insight into processes of family decision-making about CAM.
Methods
A qualitative approach was chosen because of a desire to gain greater understanding of how families perceive, make decisions, and talk about CAM. The study had ethics approval from the ALSPAC Law and Ethics Committee and the Central and South Bristol Research Ethics Committee (National Health Service).
Sampling and recruitment
First, packs containing study information, a screening questionnaire (sociodemographic background, family composition, and CAM use) and a contact details sheet were distributed to families attending ALSPAC “Family Focus Clinics” over a 2-week period during 2006. Interested families completed and returned the screening questionnaire and contact details sheet by mail to the research team. Second, purposeful sampling was used to target a subsample of responding families with the potential to provide rich data. 35 The focus was on families who had used CAM to explore family decision-making about CAM in depth. The aim was to include a variety of families in terms of sociodemographic background, number and gender mix of children, types of CAM used, and use of CAM by different family members. Of 54 families who returned screening questionnaires, 16 families were purposefully selected, 1 of whom withdrew prior to data collection.
Data collection
The aimed was to use focus groups where possible, as they allow exploration of the group dynamics of views and decision-making, and provide a forum for collective remembering as group members prompt each other, and compare each others' views and experiences. 36
Data collection took place when the children who were participating in the wider ALSPAC study, and were members of the families who had agreed to participate in our qualitative study, were 15–16 years old (we term these “index children”). On making telephone contact with the family, a parent was asked to indicate which family members would be likely to participate in a focus group. The intention was to include as many family members as possible, including the “index child.” Mothers negotiated the focus groups on behalf of their families in all but one case.
Data collection took place during July–September 2007. J.N. facilitated the groups and interviews, which were conducted in the family home. Consent forms were signed by each participating individual. A flexible topic guide was used covering the following broad areas: definitions of CAM; use of CAM by different family members; sources of information about CAM; experience of consultations with CAM practitioners; experience of over-the-counter CAM product use; type of CAM use (complementary or alternative to mainstream health care); views of access to CAM via mainstream health care; and future CAM use. All groups and interviews were recorded and subsequently transcribed by a professional transcriber.
Data analysis
Data analysis was initially guided by the issues covered within the topic guide, but increasingly gave attention to more emergent themes within the data. The interweaving of data collection and analysis meant that insights from earlier data analysis shaped later data collection, enabling the incorporation of new issues raised by participants. J.N. led the analysis, using a thematic approach guided by the principles of constant comparison. 37 “Open” coding of individual transcripts generated an initial coding framework, which was added to and refined, with coded material regrouped and recoded as new data was gathered. E.T. and A.S. coded a subsample of transcripts and met with J.N. at regular intervals to discuss the coding framework, and codes were gradually developed into broader categories and themes. Data within the themes were scrutinized for disconfirming and confirming views across the range of participants. 38
In the presentation of the findings, participants are given a unique identifier regarding role (child, mother, and father) and family number. For example, C02 is the child from family 2, M04 is the mother from family 4, and F12 is the father from family 12. On an occasion where more than 1 child/young person was present, they are identified as C101, C201, and C301 (child 1, 2, or 3 from family 1).
Findings
While it had been planned to conduct focus groups comprising at least 3 participants for all families, practical constraints and choices of some family members to opt out meant that there wound up being a mixture of small groups, paired and individual interviews. The family composition ranged from parent(s) only, parent(s) plus “index child” through to parent(s), “index child” plus other siblings. The maximum group size was 4 participants.
Participants described personal use of 25 CAM modalities (Table 1). Most participants were currently healthy: 2 mothers had a chronic health problem and 2 others alluded to health problems among family members not participating in the study. Four (4) themes relevant to this article are family understandings and beliefs about CAM; hierarchies of acceptability of CAM therapies; types of CAM users within families; and family dynamics of CAM decision-making.
Theme 1: Family understanding and beliefs about CAM
The first theme is family understanding and beliefs about CAM (Table 2). Participants tended to use a largely “institutional” and “negative” definition of CAM: “Anything not prescribed by the doctor” (C201) or “Not normally prescribed by the NHS” (M02). CAM therapies were those “outside the norm” (M13) and on the whole not recognized or provided by the NHS, although this was seen as changing at the margins. As “complementary,” families tended to believe that therapies could be used alongside conventional treatments or in support of them. For 1 participant, they should be used only for circumstances where health problems were not adequately catered for by mainstream care (i.e., to fill the “gaps”) or where conventional treatment had failed (i.e., to compensate for “failures”). For example, several families had become users of osteopathy or chiropractic to get early attention for back problems where NHS care was experienced as inadequate.
NHS, National Health Service; GP, general practitioner.
Two (2) recurring concepts were CAM as “natural” and “holistic.” There was significant perceived value, even virtue, in treatments being “not chemical” (F12) and “not modified” (F08) compared to “manufactured” (F02) and “mainline chemical drugs” (M01) that could be toxic or addictive. One (1) mother had persuaded her partner to stop taking antidepressants because “I was particularly worried about the medication being offered and (sought) homeopathy instead” (M04), describing the result as “a more long-term uplifting change that the prescribed medicine didn't have.” As holistic, CAM therapies were perceived to look at the “whole person” rather than isolated symptoms, “not just a pain in the elbow” (M07). There was a belief that CAM could offer more individualized and tailored care: “something unique for each person that suits them” (C04). A small number of participants went further, viewing CAM as facilitating a transformative effect, allowing users to “broaden [their] horizons” (M01) and shape their perception of self and their illness experiences.
Families tended to view CAM as part of wider self-care. This included a range of health maintenance practices, such as using over-the-counter herbal remedies for colds and cold sores (F05, F06), vitamins (M10, M14), supplements (F02), omega-3 fish oils (C03), “Rescue Remedy,” Arnica (C201, M10), Echinacea (F02, M10, M14), herbal infusions (C10, M14), “drinking lots of water” (C201, C301), and healthy eating (M07, C07, M16). Within these families, such activities were described as happening “automatically within the family” (M13) and viewed as part of everyday informal health care.
Participants often found it hard to define the boundaries of CAM. One (1) young person asked: “Where does alternative end?” (C10), perceiving that almost anything could benefit the mind and body. CAM use overlapped with what they viewed as healthy lifestyle activities not involving medicines or practitioners, such as yoga, relaxation, and meditation. The young people tended to show more interest in these broader practices than in CAM treatments, highlighting the roles of sports, exercise, ballet, music, and other creative arts in positive health. Mothers agreed that such activities could help in coping with a “stressful lifestyle” and attaining a “sense of well-being” (M14). The philosophical connection with CAM lay in ideas of holistic well-being and achieving positive health through active, self-directed measures.
Theme 2: Hierarchies of acceptability of CAM
The second theme is hierarchies of acceptability of CAM, with a diverse range of perspectives across and within families regarding perceived value. These hierarchies were elicited through prompt cards showing specific therapies used within the groups and interviews, which drew out areas of controversy and participants' rationales for their views.
Personal experience, scientific plausibility and “cultural” acceptance (including by the NHS) were the main means by which family members evaluated the acceptability of CAM therapies. Therapies seen as more “mainstream”—such as osteopathy, herbal medicine, chiropractic, and acupuncture—were both more widely used by families and perceived more positively by nonusers within the families. Participants expressed mixed views of homeopathy and Chinese medicine. Crystal healing, energetic healing/aura work, and Reiki were the most controversial, with family members who disagreed on other issues united in their skepticism regarding these “fringe” therapies. The relatively rare supporters of such therapies were aware of the marginality of their beliefs, acknowledging that “most other people probably feel you're nuts” (M04).
Fathers and children were the most cautious or skeptical about the value of CAM therapies and often framed results as “psychologic” rather than “real” (F05), or “placebo” rather than “genuine” (F06). One (1) young person suggested that CAM might have the capacity to “tame hypochondriacs” and help to get rid of their “mental instabilities” (C07). Another young person approvingly distinguished chiropractic as “clinical” not “crystal” (AC10). Mothers were more likely to value wider benefits of receiving CAM other than direct health improvement. The concept of control was common here, illustrated by a mother who contrasted her CAM use with her NHS experience, saying: “At least I felt I was in control and trying to do something to help myself, which made me feel better” (M12). A mother who valued these more intangible benefits articulated her willingness to accept a degree of mystery regarding the mechanisms of therapies, in that a therapy might work without one knowing how it worked (M07; Table 2).
Theme 3: Types of CAM users within families
The third theme concerns types of CAM users within families. Within our families, no participants rejected CAM outright or acted as “last resort” users who turn to CAM because all conventional approaches have failed. 15,39 Rather, there was a broad distinction between “pragmatic” (or pluralist) and “committed” users, supporting previous qualitative findings from individual CAM users. 15,39,40
Pragmatic users
Pragmatic users employed a narrower range of CAM therapies, “shopping around” for products or therapies that might help a particular condition and happy to use them alongside conventional medicine. When they used CAM as an “alternative” to conventional treatment, this was for pragmatic rather than philosophical reasons, for example, choosing a chiropractor for immediate access rather than waiting for an NHS physiotherapy appointment (F07). Pragmatic users were reassured by what they perceived to be the growing normalization of CAM, evidenced in increased acceptance by primary care practitioners and the spread of over-the-counter remedies from specialist shops to major pharmacy chains or supermarkets.
Committed users
A minority of mothers within families were committed users, with a deeper philosophical commitment to CAM or deeper-rooted concerns about the system of conventional medicine. Committed users seemed to be more consistently influenced by both the “push” and “pull” factors identified in existing literature. 13 –15 The push factors—concerns about conventional treatment and not being treated as a whole person—were particularly strong. A committed user contrasted the effects of antidepressants on her partner—“They just doped him”—with those of homeopathy, which was perceived to catalyze “an intrinsic change in himself” (M04). Two (2) mothers articulated how unhelpful medical encounters, where they felt that their views and illness experiences were not taken seriously, had prompted them to seek alternative help. The pull factors were the “flip side” of the push factors. Not being treated as a whole person in conventional settings led to the search for a different kind of therapeutic relationship in CAM settings. A mother said that she looked to CAM for “an understanding person … that knows what they're doing” (M09). She had found a chiropractor with the ability to “go deeper” in the search for causes of her condition, taking on board emotional and other aspects of her back pain, helping to create a “deep-rooted understanding of why you are like this.” She judged the effectiveness of her therapy both in terms of symptom relief and support for a wider transformative “journey.” 41
Theme 4: Family dynamics of CAM decision-making
The final theme concerns family dynamics of CAM decision-making (Tables 3 –5).
GP, general practitioner.
Mothers as family “champions” of CAM
The mother had been the first user of CAM and its family “champion” in the majority of the study families (12 of 15). Three (3) of these mothers were NHS health professionals: 2 were nurses (1 also a counselor) and the third was a physiotherapist who also practiced acupuncture in NHS settings. A fourth mother had worked as a receptionist for a GP practice that was generally sympathetic to CAM. In three families, the father had been first user. In one case he was the family CAM champion, and in the other two the parents held this role jointly. In the 12 cases where the mother was the sole champion, only 3 fathers took part in the groups or interviews.
The champion's initial interest in CAM had been stimulated by a variety of sources including: GPs sympathetic to CAM; family friends who were health professionals; or friends and extended family members who had experienced successful CAM treatments or were CAM practitioners. Health professionals” endorsement of CAM was a source of reassurance. More indirect sources included leaflets at a health center and advice from pharmacists or health shops. Internet searching was widely used but also treated with suspicion, due to concerns about the commercial agendas of CAM related websites. When participants were looking for a specific therapy, they sought recommendations from someone with direct experience of a practitioner.
Mothers, as family CAM champions, tended to take the role of suggesting CAM therapies for their partners and children, sometimes going beyond the nuclear family into extended family and the workplace. One (1) mother said that her 13- and 15-year-old children “were still quite directed by me” (C16) and was involved in developing palliative care for her mother-in-law with terminal cancer. In another case, a mother's support for CAM bordered on interference with a conventional treatment for her daughter, as she actively discouraged her from using a medically prescribed nasal spray for dealing with migraine. Another mother, a youth service manager, described how she often suggested “green” remedies for period pains within her workplace.
Cautious or skeptical fathers and young people
Other family members appeared less convinced by CAM than the family champions. Only 6 fathers participated in the focus groups or interviews and most took a back seat in discussions. One (1) introduced himself as the family “skeptic,” an “engineer” working in a “fact-based environment” (Table 4), yet went on to acknowledge that he knew little about CAM and said that he was willing to trust his partner's expertise. Even a father who was the first member of his nuclear family to receive a CAM treatment (osteopathy), and whose own mother was a healer, positioned himself as someone peripheral to the family discussion about CAM by saying, “I'm the husband and Dad and I'm not sure exactly what you'd like me to talk about” (F06).
The young people within the families (ages 15–20 years) were also often less enthusiastic about CAM than their mothers. They were more likely to welcome the potency of conventional medications, which their mothers were wary of (Table 3). This caused some intergenerational tensions within the family dialogue. One (1) daughter said she would go to a doctor first because of “quite a strong belief in logical stuff” (C10) and her mother interjected “your father's daughter” (M10) (the father was a scientist.) Another “index child” resisted when both his parents suggested that lack of confidence and experience would lead him to defer to medical opinion, replying that he wouldn't accept “visualization” (C13) as a treatment even if his doctor, parents, and friends were all encouraging him to use it. In three mother–daughter joint interviews, the daughters were notably more tentative than their mothers in their support for CAM. For example, whereas 1 mother was highly persuaded by homeopathy, her daughter would only acknowledge that it was “quite good” (C04) for general well-being but not specific health complaints.
Family dynamics and dialogue regarding CAM
The family dynamics regarding CAM varied from “united” or “consensual” to “divergent” or “conflicting.” Family views converged within dialogue from a family that held particularly positive attitudes toward CAM; this was rooted in direct personal experiences of helpful CAM treatments among several family members. The father had first been to a homeopathic pharmacist 20 years ago and benefited from the treatment which “seemed to work,” although he retained caution that this “could well have been a placebo effect” (F06). The mother had subsequently used a homeopathic form of whooping cough immunization for one of her children, in response to concerns about the “extra chemicals” (M06) perceived to be involved in the conventional treatment. More recently, her daughter (the “index child”) had seen a homeopath to help with problems at school, and the intervention had involved both talking and a remedy “that seemed to help her no end” (F06). The daughter did not play a strong role in the focus group, but said she had been happy to be guided into homeopathy (by both her mother and an aunt) and described the treatment as “amazing” (C06). The overall result was a homogenous family view about the value of homeopathy, apparently derived from personally experienced benefits rather than a public family “line” within the focus group.
Three (3) dialogue extracts (Tables 3 –5) show other more varied family dynamics regarding CAM. In the first two cases the mother is a strong family champion of CAM; in the third, both parents are advocates of some CAM use.
In Family 1 (Table 3), the young people (mid to late teens) have had a considerable experience of CAM from early childhood, but the dialogue suggests that they are now distancing themselves from their mother's beliefs and practices. The youngest—the “index child”—retains the greatest faith in CAM, which seems to now derive from a positive personal experience of reflexology rather than direct parental influence. However, he is not happy with natural sleeping “potions” (C101) and provokes an argument about the relative merits of strong conventional medications versus gentler alternatives. All the young people in the family favor the former on grounds of perceived greater effectiveness. The mother is no longer able to define the issue for them in terms of the avoidance of “strong and horrible” medications (M01). Rather, for the young people, the relative ineffectiveness of the alternatives or reliance on “placebo” makes them the more “hazardous” option (C101). They resist and counter their mother's beliefs both through the use of skeptical scientific language—“placebo”—and by reversing their mother's evaluation of a hazard.
In the second dialogue (family 2, Table 4), the father expressly concedes leadership regarding decision-making about CAM to his partner, but passively and with reservations. The mother is an NHS physiotherapist who also practices acupuncture within the NHS, and her role as family health “expert” is boosted by her professional standing and her friendship with a GP who is a CAM enthusiast. The mother as champion asks permission to “interrupt” (M02) her partner's account and uses the interruption to modify it to display him as more amenable to CAM than he has suggested. He backs-off using humor and allows himself to be corrected, without much sense of engagement. This dialogue suggests that, in this family, the mother can define the agenda regarding CAM and is influential in suggesting health practices, but without proactive support from the father.
In the third dialogue (family 7), the three participants are all active in the discussion (Table 5). The mother (a nurse and counselor) has a strong interest in the place of CAM in family health and leads the discussion, but father and daughter are also both independently interested, making their own points rather than echoing the mother's. They raise the broader question of the relationship between the mind and health, and the father takes this forward by introducing ideas about motivation and responsibility for self-help, which he also associates with the CAM ethos. The 3 participants are neither simply echoing each other nor reactive to a dominant other in the conversation. Each appears to articulate a genuinely held view that is broadly compatible with that of other family members, which was a relatively rare occurrence within these families.
Discussion and Conclusions
This qualitative study has explored family beliefs, decision-making, and dialogue about CAM through focus groups and interviews with a purposeful sample of families who had used CAM. The findings indicate many commonalities in views of CAM across the families, including broad acceptance of herbal remedies for minor ailments, and “mainstream” physical therapies such as osteopathy and chiropractic, as part of broader beliefs about the benefits of a proactive healthy lifestyle. In most family discussions, the father (where present) positioned himself as lacking expertise or quietly skeptical about CAM. The mother was usually the CAM “champion,” having been introduced to CAM through personal recommendation and confirmed in her championship by successful personal experience of CAM. Mothers were predominantly “pragmatic,” and fewer were “committed” CAM users. 15,39 The degree to which mothers appeared able to define the family agenda regarding CAM varied across the families, and they did not simply determine the health beliefs and practices of their families. In their mid to late teens, the participating young people were developing autonomous views of CAM and health, influenced by ideas of science and cultural norms beyond the family circle. Within the family dialogue, they expressed a more restrictive approach to CAM than their mothers, causing some intergenerational tensions.
Using focus groups and interviews allowed a window on decision-making processes within families. However, we recognize that the context changes what people say. Collecting data from family groups or pairs provides information that would not be obtained through individual interviews but also means that some feelings and views are not shared in the presence of family members. 42 –44 They do, however, provide an opportunity to engage with negotiated dialogue within families and avoid reliance on a single member to provide a proxy “family view.” 45 –47
Our study participants generally seemed to feel free to contribute openly within the groups and interviews. However, many fathers and some children did not participate in the study, and they may have held different (possibly more skeptical or indifferent) views than those who did. Half of the fathers who did participate took a background role within the discussions, as did some young people, mostly boys. However, most of the young people appeared willing to talk and to disagree with their parents. The gender differences between some parents (i.e., mothers and fathers) were not notably replicated in their children. Some mothers who were committed CAM users and “champions” appeared to feel isolated in their position. Given the known reticence about some issues in family health research, 42,44 there is a methodological question about what the participants may have said within larger family groups, and what they may have left unsaid during the focus groups and interviews. In addition, this qualitative study focused on families using CAM. It is highly likely that different themes and perspectives would have emerged from families not using CAM, but this remains a subject for future study.
Despite possible pitfalls, conducting family focus groups and interviews provided a useful way of examining dialogue and decision-making regarding CAM within the family circle. As the children of the families grew older, they were becoming increasingly autonomous in their beliefs and decisions about CAM, though still within family cultures that were open to CAM use and believed in proactive healthy lifestyles.
Footnotes
Acknowledgments
The authors wish to acknowledge the funders (David Telling Charitable Trust), the participating families, and staff at the Avon Longitudinal Study of Parents and Children (ALSPAC) for access to their study participants. We also thank Professor Jean Golding for supporting this study. The views expressed in this article are those of the authors and do not necessarily reflect those of the funders or the ALSPAC study team.
Disclosure Statement
E.A.T. is a complementary medicine practitioner (consultant homeopathic physician).