Parents’ and practitioners’ differing perspectives on traditional and complementary health approaches (TCAs) for children

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European Journal of Integrative Medicine 2 (2010) 9–14

Original article

Parents’ and practitioners’ differing perspectives on traditional and complementary health approaches (TCAs) for children Ava Lorenc a,∗ , Mitch Blair b , Nicola Robinson a a

b

Thames Valley University, Paragon House, Boston Manor Road, Middlesex TW8 9GA, UK River Island Paediatric and Child Health Academic Centre, Imperial College Northwick Park Hospital Campus, Watford Road, Harrow, Middx HA1 3UJ, UK Received 22 December 2009; received in revised form 2 February 2010; accepted 3 February 2010

Abstract Aim: To compare parents’ and practitioners’ perspectives on traditional and complementary healthcare approaches (TCAs) used for children in a multi-ethnic community. TCA includes not only complementary and alternative medicine (CAM) but also folk/ethno-medicine. Methodology: An exploratory qualitative study in multi-ethnic community settings and primary care in Northwest London. Eleven focus groups explored parents’ use of TCA for their children, sources of information, decision-making processes and communication with healthcare practitioners about TCA use. Translation was available. Semi-structured individual interviews were conducted with 30 GPs, nurses, health visitors and midwives to explore their attitudes, beliefs and knowledge. Sampling was purposive and iterative to capture the range of ethnicities. Data were analysed using Framework Analysis and Atlas.ti software. Results: A wide range of TCA was used for children. Parents’ and practitioners’ perspectives on TCA differed, including: definition, categorisation, plausibility, efficacy, epistemology and evidence. Parents’ perspectives were generally more pragmatic, including what was classified as TCA and how they evaluated effectiveness. Practitioners focussed on more theoretical issues, in particular approving of TCA with plausible mechanisms of action and research evidence. Parents relied on family members and other mothers to inform their TCA use. Discussion: Mismatch in perspectives and criteria regarding TCA may create communication problems during consultation. Practitioners need to appreciate the range and extent of TCA used for children and understand reasons behind this use. Discussions with families on whether these can be integrated with current medical treatment in a safe and acceptable way can then occur. © 2010 Elsevier GmbH. All rights reserved. Keywords: Child; Primary health care; Office visits

Introduction Traditional and complementary healthcare approach (TCA) is an umbrella term, encompassing complementary and alternative medicine (CAM) and traditional, ‘folk’ or ‘ethno’ medicine [1]. Traditional medicine is often passed down through generations, is relatively informal and non-commercial [2]. Estimates of TCA use for children in primary care or the general population vary from 1.8% to 70% [3–5], depending on the country of study, ethnic origin of participants and differing definitions of CAM/TCA. The most prevalent types used for

∗

Corresponding author. Tel.: +44 2082094414. E-mail address: [email protected] (A. Lorenc).

1876-3820/$ – see front matter © 2010 Elsevier GmbH. All rights reserved. doi:10.1016/j.eujim.2010.02.002

children are dietary supplements (vitamins and minerals) [6–8], homeopathy [9–11] and herbal medicine [11,12]. Between 18% and 80% of practitioners report discussing TCA with patients [13–15], over half of practitioners recommend some form of TCA [16–18] and up to 95% have referred patients to TCA practitioners [19,20]. Quantitative surveys have shown that the majority of practitioners have an ‘ambivalent’ or ‘neutral’ attitude to TCA [14,21,22], others have shown that few practitioners have overtly negative attitudes to TCA [14,23] and two surveys have shown predominantly positive attitudes [24,25]. A qualitative UK study of academic GPs found their beliefs about TCA could be viewed as on a spectrum from enthusiastic to skeptical, with those who were undecided being in the middle. The main influence on their attitude was their professional experience [26].

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Studies rarely compare patient and practitioner reported data [27]. Studies have generally found that patients have more positive attitudes and greater expectations regarding TCA than practitioners. A survey comparing physician and patient knowledge of and attitudes to traditional Chinese medicine (TCM) found that knowledge levels were similar but patients were slightly more positive, and patients knew more about practical aspects compared to practitioners’ basic concepts [28]. However, this quantitative survey does not explore the details of these constructs. Two other studies investigated cancer patients, one is ongoing [27], the other found disparities in: definition of ‘unconventional’; reasons for communication; and decision making [29]. Two studies have included the triad of patient, physician and CAM practitioner [27,30]. Ben-Arye et al. [30] found that patients perceived CAM as safer and more efficacious and had greater expectations of the physician’s role in CAM than physicians. Adler emphasise the need to study all the stakeholders in order to gain a realistic view of healthcare communication [27]. Stevenson et al. [48] studied self-treatment in the consultation, using audio-taping of consultations and qualitative interviews with patients and practitioners. Kleinman highlights the significance of patients’ and practitioners’ differing explanatory models of health and illness [31]. These studies highlight potential discrepancies but rarely explore in-depth the beliefs behind these differing behaviours and expectations. Other studies show that practitioners may underestimate how many of their patients use TCA [17,32] and many agree they should have greater TCA knowledge [18,21,33]. This study aimed to compare parents’ and practitioners’ perspectives on traditional and complementary healthcare approaches (TCAs) used for children in a multi-ethnic community. Methods An exploratory qualitative study was conducted within community settings and primary care in Northwest London. Focus groups were conducted with parents to explore their use of TCA for their children, sources of TCA information, their decision-making processes and whether they communicated with healthcare practitioners about the use of TCA. Sampling was purposive to achieve a broadly representative range of ethnicities. Parents were recruited from community settings such as mother and toddler groups, churches/temples, schools and refugee groups. Participants were provided with an information sheet about the study – translated for non-English speakers – and signed a consent form. A short demographic questionnaire (one A4 page) identified their ethnic group, age, income, children, qualifications and whether they were born in the UK. Parents were given a £5 book token as an incentive to attend. For each hour long focus group between 8 and 12 parents were invited. A topic guide was used but this was flexible to promote discussion amongst participants. A translator was used when necessary, who translated the facilitators questions and the participants’ responses during the discussion. A crèche was available when needed. Further details on the focus group methodology are available in a previously published paper [34].

Focus groups were used, as they are ideal for exploring beliefs and opinions, including culturally ingrained and normative beliefs about health, and the reasons behind these [35,36]. Although they do not provide as much detail on individual accounts as interviews [37], they may highlight differences and similarities between individuals [38], particularly for marginalised groups such as ethnic minorities [39]. Interviews were used for practitioners rather than focus groups as a personal account was paramount, the subject matter was complex, relating to both personal and professional issues and there would have been power and status issues in grouping practitioners [37]. Interviews are also more flexible in terms of timing. Semi-structured, one on one interviews were conducted with 30 general practitioners (GPs), nurses, health visitors (HVs) and midwives to explore their attitudes and beliefs to TCA, knowledge and sources on information on TCA. Primary care practitioners were chosen as the first point of call for parents and therefore a potential setting for discussion of TCA. Sampling was purposive and iterative for healthcare qualification and to capture the range of ethnic groups in the area. Interviews were conducted in the practitioners’ workplace and the surgery was reimbursed for an hour of their time. Sampling was non-random, as in qualitative inductive research the statistical representativeness of a sample to the wider population is not given the same importance as in quantitative [40]. Sampling is based on theory and “informationrichness” rather than representation [41]. Secondly, it is theoretically difficult to draw a representative sample as this assumes prior knowledge of the potentially influential characteristics [41]. All interviews and focus groups were digitally recorded and data were analysed using Framework Analysis, inter-rater coding, and Atlas.ti software [42,43]. Framework analysis consists of five key stages: familiarisation, identifying a framework, indexing, charting and mapping/interpreting [43]. Data analysis began alongside data collection in order to pursue emerging themes. Results Participants Groups invited to participate in focus groups were as follows: 47 community groups (from lists on community websites); 3 refugee groups; 13 GP practice mother and toddler/baby clinic groups; 4 nurseries; 8 schools; 29 places of worship; 1 parenting website; 1 early years centre and 1 baby massage class. Reasons for non-response or non-participation were lack of time, lack of resources, commitments to other projects and concerns about confidentiality. 11 focus groups were conducted in the following settings: baby massage class; Sri Lankan mother and toddler group; refugee outreach English class; refugee support group; two GP surgery toddler groups; nursery; Asian women’s centre; mother tongue school; a church group and a parent school association. Often an intermediary was used to recruit individual parents as they had an established relationship with the parents.

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For four groups, parents were invited and chose to attend, for seven they were routine meetings. A total of 92 parents (defined as the child’s main carer) took part. The majority were mothers (67%), aged 30–39 (54%), and were educated up to a first degree (74%). Household income (although missing for 25 participants) was diverse. The average number of children per parent was 1.45, with most children under five years old. Just over half of the parents were not born in the UK, with a mean of twelve years in the UK. The sample was very ethnically diverse. Compared to census figures for the study area, the study sample had fewer White British (16% compared to 40%), and Indian (4% compared to 20%), more “Other White” (15% compared to 7%), African (10% compared to 5%) and “Other Asian” (28% compared to 5%) [44]. Further details are available in a previously published paper [45]. A number of GP practices in the area were contacted, chosen to give geographical spread in order to capture a range of ethnic diversity in the communities. Practitioners volunteered to take part in the study. Thirty healthcare practitioners were interviewed, 13 GPs, 9 HVs, 6 nurses, 1 medical student and 1 midwife. Eleven were White, 11 Asian, 3 Black, 1 Chinese and 1 ‘Other’. The majority (87%) were female.

Definition of TCA One of the main differences between parents’ and practitioners’ views was their definition of TCA. This study aimed to explore participants’ definitions rather than imposing a strict definition. Parents’ criteria for classifying treatments were more practical, including availability, preparation and application (topical/internal): “Sometimes you don’t need to go out and buy stuff from outside [for TCA]; you can use some stuff from our house, from home” (Sri Lankan mother) “I can give you an example. . . particularly edible things, different foods, different herbs to. . . cure” (White European Mother)

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To distinguish TCA from daily life or other healthcare, parents focussed on constituents (man-made or natural), function (TCA used for minor conditions and health promotion) and hierarchy of resort (TCA used first). Practitioners’ criteria were predominantly epistemological—mechanism of action, ingredients, dose, efficacy and regulation. The categorisation of treatments also differed. Parents rarely divided TCA into categories, compared to practitioners who described at length the distinction between ‘complementary’, ‘traditional’ and ‘alternative’ approaches. “I mean ordinary osteopathy I suppose that’s technically a um, a complementary rather than a, somehow I rather see that a bit more middle-of-the-road” (White British female, GP) “I was just thinking about the massage, I wouldn’t necessarily class it as an alternative therapy but it probably is” (White British female, HV)

Range of TCA Every parent in the focus groups had used TCA for their child. The most common TCA used were home remedies, including herbal teas (e.g. dill water), foods (e.g. honey) and spices (e.g. turmeric). Massage and religious approaches were also common. Practitioners were rarely aware of ‘routine’ TCA, particularly religious approaches and home remedies, which often depended on practitioners’ ethnic origin. They also mentioned practitionerbased TCA much more than parents who rarely cited these for children. Certain TCA rarely cited by practitioners but used by parents can be classified in three groups; TCA from abroad, e.g. adjwain; those seen as borderline with conventional medicine, e.g. steam inhalation and those not ‘visible’ in the consultation, e.g. prayer.

Approval criteria

“what I understand by the traditional healthcare is anything that is available readily at home” (Indian mother)

For parents, effectiveness was important, which was assessed by observing the effect on their child.

I think [TCA is] about natural herb or medicine, or giving food, about the food (Iranian mother)

“[I] applied arnica on his bruises and er it seems to work well” (Mixed White and Asian mother)

Practitioners’ had a more epistemological basis, defining TCA as alternative to conventional medicine:

“Q: And it works? 1: Very good, very, very good. You can feel the stomach straight away, before they and they stop crying so it’s definitely, definitely relief, you know.” (Asian British aunt)

“Alternative therapists have, um, in my opinion, a er, different rationale to their therapies which do not conform with traditional thought processes” (White British male, GP) “I think perhaps [TCA is] something that isn’t available on the National Health Service that the client might have to pay extra for” (White British female, HV) “To me it [TCA] would mean sort of like other sort of like remedies other than obviously prescription medication from a GP” (Black British Caribbean female, HV)

For practitioners, the plausibility of mechanism of action was more important, being one of the main influences on their attitudes to specific TCA. Those they could explain such as herbal medicine (pharmacological explanation), acupuncture (pain gate theory) and massage (relaxing) were viewed more positively and were more likely to be included in their own or patients’ treatment plans. Conversely homeopathy and reflexology were most negatively viewed.

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“if I don’t know how things work I won’t use them” (P4, White British female, nurse practitioner) “plausibility of mechanism of action is one, er I think that’s probably the key one [informing factor]” (P7 White British male, GP (retired)) “I think it is, massage is something, a powerful therapy potentially and you can explain why, you know it’s got a, there’s a basis for it” (P7, White British male, retired GP) Sources of knowledge Parents obtained information on TCA from similar sources to other childcare advice – family members and other mothers, e.g. from mother toddler groups or school. They trusted advice from family over that they found themselves such as on the Internet. Observed efficacy was their main evidence, as well as tradition of use. “we do get information from the internet but then if its recommended by a doctor or a friend then we get an assurance that this is tried and tested, then we would go for such alternative medicines” (Indian mother) Practitioners cited relying on research evidence, in line with ‘evidence-based practice’, although their actual knowledge about TCA appeared to come from patients. Knowledge from consultations also appeared more important than that from their personal background, such as an awareness of ethnically related TCA from their patients’ countries of origin, rather than their own. “Well I mean the main thing that would form my opinion about anything is safety, regulation and evidence-based” (White Irish female, Nurse) Discussion This study identified that parents and practitioners have a number of disparate perspectives on TCA, mainly related to definition, categorisation, range, plausibility, efficacy, epistemology (source and nature of knowledge) and evidence. Parents’ perspectives on TCA were in general more pragmatic, including their classification of treatments and decision making, which was informed by effectiveness. Practitioners focussed on more theoretical issues such as theories of how TCA work and the research evidence. Practitioners’ definition of TCA as epistemologically different to conventional medicine may be related to professional and political–economic divisions rather than representing use in the community [46]. Practitioners’ attempts to classify TCA into categories are unlikely to adequately conceptualise the continuum perceived by parents, as described by Coreil and Bryant [46]. As well as underestimating the range of TCA used for children, practitioners were also likely to underestimate the extent of use, confirming previous research [11,47]. There are a number of reasons why practitioners may not be fully aware of the range of TCA being used. Firstly TCA,

particularly home remedies, are often used for minor, acute conditions before, or instead of, presenting to primary care. Secondly, parents may not disclose TCA as it is perceived as selfcare, everyday and psychosocial, perhaps not part of healthcare [48]. Thirdly, there is a lack of research on children who are not ‘ill’, and problems obtaining data on ‘informal care’ practices, precisely because they are such an ingrained part of culture and daily life [49]. TCA was often used routinely and independently of conventional medicine, often used prior to (and often to avoid) seeing the GP. This suggests that TCA shares many similarities with health promotion [50] and advocates improving the dialogue between health promotion and TCA/CAM [51]. This study found that practitioners were more likely to approve of TCA ‘closer’ to biomedicine, particularly regarding their mechanism of action and evidence base. Significant differences in approval criteria were also found in a recent American survey [52]. Perceived incongruence with the biomedical model may mean certain TCAs are not discussed in consultation, perhaps seen as not ‘appropriate’ for discussion in medical care [53] or ontologically and epistemologically incongruent with conventional medicine [54]. This particularly includes traditional medicine, religious practices or those based in alternative belief systems [17,19,55,56]. Practitioners’ approval of TCA which they could ‘understand’ may also be explained by TCA ‘propping up’ the medical system, by addressing its ‘gaps’ [57]. This emphasis on theory is likely to differ to patients who appeared to focus on more practical aspects of treatment, as previously found for TCM [28]. Practitioners’ cited emphasis on empirical evidence and efficacy is likely due to their professional focus on evidence-based medicine [58]. Similarly to other factors, limiting awareness and acceptance of TCA according to its evidence base may risk excluding many popular forms of TCA [59]. The focus on EBM is incongruent with TCA, the hallmark of which is popularity with the public [60]. An appreciation that factors other than evidence are more important for parents, including beliefs, social systems and culture, may improve practitioner–patient rapport [61–63]. The differences in criteria for deciding to use TCA were also found in a study of cancer patients [29]. Disparities between parents and practitioners are likely to limit practitioners’ understanding or appreciation of the extent of and reasons for TCA use [64] and may cause conflict, “typifying the inadequate communication between patients and providers regarding CAM issues” [52]. Both parents and practitioners described blurred boundaries between TCA and food, religion and daily life. This raises the issue of whether TCA should therefore be included in conventional medical consultations. Practitioners may not consider TCA part of their role as a healthcare provider, but as self-treatment [48]. Conversely, many saw it as part of their professional duty, particularly regarding patient safety. Mismatch in perceptions of the use of TCA is likely to restrict communication in the consultation [48]. This study suggests that practitioners need to uncover what is important in the patient’s world, rather than imposing their professional criteria. It is also important to focus on each

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individual’s issues rather than holding a potentially stereotypical view of ‘TCA users’ [65]. Practitioners should aim to have an appreciation and understanding of TCA use, and to be tolerant of patients’ differing perspectives [65]. Physicians need to be clear about their role in TCA as patients may have different expectations [30]. There is extensive guidance on how practitioners can practice in a more culturally competent way, which would improve the concordance between practitioners and parents regarding TCA [66–70]. This study was limited in the number of practitioners interviewed, particularly nurses. Further studies are now recommended, in particular: using a greater number and range of practitioners; using observation methods of clinical encounters to objectively measure clinical behaviour; using paired practitioner–parent samples in order to clarify direct disparities. Ethnographic methods [71] of the healthcare consultation dyads (patient–physician) or triads (patient–physician–TCA practitioner) may be particularly useful [27]. The project team are currently undertaking a quantitative study based on these results. Conclusions Practitioners’ professionally guided criteria for assessing TCA are likely to differ greatly from parents’ more pragmatic criteria. This mismatch in perspectives regarding TCA may create communication problems during consultation. Practitioners need to appreciate the range and extent of TCA used for children and understand the reasons behind this use. They can then ask families about TCA use and make judgements with them about whether and how these can be integrated with current medical practice in a safe and acceptable way to child, parents and wider family. Financial support This study was supported by a grant from the King’s Fund, a healthcare charity based in London. Conflict of interest No conflict of interest declared. Acknowledgements We would like to thank all the parents and practitioners who took part in this study. References [1] Kaptchuk TJ, Eisenberg DM. Varieties of healing. 2. A taxonomy of unconventional healing practices. Annals of Internal Medicine 2001;135:196–204. [2] Hufford DJ. Cultural diversity, alternative medicine, and folk medicine. New Directions in Folklore 1997. [3] Davis MP, Darden PM. Use of complementary and alternative medicine by children in the United States. Archives of Pediatrics & Adolescent Medicine 2003;157:393–6.

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