Epistemic injustices in clinical communication: the example of narrative elicitation in person-centred care.

The increasing popularity of the term 'person-centred' in the healthcare literature and a wide range of ideals and practices it implies point to the need for a more inclusive and holistic healthcare provision. A framework developed in a Swedish context suggested narrative elicitation as a key practice in transition to person-centred care. Initiating clinical communication by inviting people to tell their stories makes persistent yet often subtle problems in clinical communication visible. By drawing upon an observational study on narrative elicitation and vignette-based focus group interviews with nurses, our aim is to trace 'credibility deficits' (Fricker 2007. Epistemic Injustice. Power and the Ethics of Knowing. Oxford: Oxford University Press) and 'credibility excesses' (Medina 2011, Social Epistemology, 25, 1, 15-35, 2013, The Epistemology of Resistance: Gender and Racial Oppression, Epistemic Injustice, and the Social Imagination. Oxford: Oxford University Press) in narrative elicitation. We argue that narrative elicitation may be one way to tackle epistemic injustices by giving voice to previously silenced groups, yet it is not enough to erase the effects of 'credibility deficits' in clinical communication. Rather than judging individual professionals' success or failure in eliciting narratives, we underline some extrinsic problems of narrative elicitation, namely structural and positional inequalities reflecting on narrative elicitation and the credibility of patients. 'Credibility excesses' can be useful and indicative to better understand where they are missing.

The effects and costs of home-based rehabilitation for heart failure with reduced ejection fraction: The REACH-HF multicentre randomized controlled trial.

BACKGROUND: Cardiac rehabilitation improves health-related quality of life (HRQoL) and reduces hospitalizations in patients with heart failure, but international uptake of cardiac rehabilitation for heart failure remains low. DESIGN AND METHODS: The aim of this multicentre randomized trial was to compare the REACH-HF (Rehabilitation EnAblement in CHronicHeart Failure) intervention, a facilitated self-care and home-based cardiac rehabilitation programme to usual care for adults with heart failure with reduced ejection fraction (HFrEF). The study primary hypothesis was that the addition of the REACH-HF intervention to usual care would improve disease-specific HRQoL (Minnesota Living with Heart Failure questionnaire (MLHFQ)) at 12 months compared with usual care alone. RESULTS: The study recruited 216 participants, predominantly men (78%), with an average age of 70 years and mean left ventricular ejection fraction of 34%. Overall, 185 (86%) participants provided data for the primary outcome. At 12 months, there was a significant and clinically meaningful between-group difference in the MLHFQ score of -5.7 points (95% confidence interval -10.6 to -0.7) in favour of the REACH-HF intervention group ( p = 0.025). With the exception of patient self-care ( p < 0.001) there was no significant difference in other secondary outcomes, including clinical events ( p > 0.05) at follow-up compared with usual care. The mean cost of the REACH-HF intervention was £418 per participant. CONCLUSIONS: The novel REACH-HF home-based facilitated intervention for HFrEF was clinically superior in disease-specific HRQoL at 12 months and offers an affordable alternative to traditional centre-based programmes to address current low cardiac rehabilitation uptake rates for heart failure.

The experience of using complementary therapies after a diagnosis of cancer: a qualitative synthesis.

This article describes a qualitative synthesis of published research on cancer patients' experiences of complementary therapies. We conducted a systematic search for qualitative studies on this subject published between 1998 and 2007. Twenty-six refereed journal articles met the inclusion criteria. These 26 articles were repeatedly read by the research team and key concepts emerging from them were identified. Differences and variations were examined in association with treatment, therapy type and by stage of cancer (early stage, mid-treatment, advanced cancer, palliative care and long term 'survivors'). Six overarching concepts were located, which describe the key aspects of patients' experiences of the use of complementary and alternative medicine after a diagnosis of cancer: Connection; Control; Well-being; Transformation; Integration; and Polarization. These are described in a 'line of argument' synthesis, and differences associated with treatment type and stage of disease are noted. The findings are presented in a table showing the six concepts according to treatment type and stage; as a composite story; and in a diagrammatic model showing the individual, practitioner and organizational levels. The synthesis identified various specific ways in which complementary therapies supported cancer patients, as well as occasional negative effects. The most notable barrier was the perceived polarization of complementary therapies and biomedicine; patients reported better experiences in integrated settings.

Traditional acupuncture for people with medically unexplained symptoms: a longitudinal qualitative study of patients' experiences.

BACKGROUND: People with medically unexplained physical symptoms (MUPS) are helped by interventions that combine physical and psychological explanations and treatment. Traditional acupuncture may offer such a perspective, but its use for these patients has not been investigated. AIM: To ascertain how patients with MUPS perceive and experience five-element acupuncture treatment. DESIGN AND SETTING: A longitudinal qualitative interview study, nested in a randomised controlled trial was carried out in four general practices in socioeconomically diverse areas of London. METHOD: A purposive sample of 20 trial participants was interviewed twice, at the start and the end of 6 months of acupuncture treatment. Semi-structured interviews were transcribed, coded, and analysed thematically, summarising both across-case as themes and within-case individual vignettes. RESULTS: Acupuncture, initially accepted as 'just another referral' - one like many others that had been tried and proved unsuccessful - was valued for the amount of time allotted with a caring practitioner who listened and responded, as well as for the interactive and holistic nature of the sessions. These attributes encouraged many patients to take an active role in their treatment, including making cognitive or behavioural lifestyle changes. Interviewees cited a wide range of changes in their health that spanned physical, psychological, and social dimensions. These were largely positive and included an increase in physical and/or mental energy, as well as feelings of greater personal control, calmness, and relaxation. Three interviewees reported worsening health but did not ascribe this to acupuncture. CONCLUSION: Many patients who were treated with five-element acupuncture perceived a range of positive effects and appeared to take on a more active role in consultations and self-care.

Acupuncture for 'frequent attenders' with medically unexplained symptoms: a randomised controlled trial (CACTUS study).

BACKGROUND: Medically unexplained physical symptoms (MUPS) are common and difficult to treat. AIM: To investigate the effectiveness of adding five-element acupuncture to usual care in 'frequent attenders' with MUPS. DESIGN AND SETTING: Randomised controlled trial in four London general practices. METHOD: Participants were 80 adults with MUPS, consulting GPs ≥8 times/year. The intervention was individualised five-element acupuncture, ≥12 sessions, immediately (acupuncture group) and after 26 weeks (control group). The primary outcome was 26-week Measure Yourself Medical Outcome Profile (MYMOP); secondary outcomes were wellbeing (W-BQ12), EQ-5D, and GP consultation rate. Intention-to-treat analysis was used, adjusting for baseline outcomes. RESULTS: Participants (80% female, mean age 50 years, mixed ethnicity) had high health-resource use. Problems were 59% musculoskeletal; 65% >1 year duration. The 26-week questionnaire response rate was 89%. Compared to baseline, the mean 26-week MYMOP improved by 1.0 (95% confidence interval [CI] = 0.4 to 1.5) in the acupuncture group and 0.6 (95% CI = 0.3 to 0.9) in the control group (adjusted mean difference: acupuncture versus control -0.6 [95% CI = -1.1 to 0] P = 0.05). Other between-group adjusted mean differences were: W-BQ12 4.4 (95% CI = 1.6 to 7.2) P = 0.002; EQ-5D index 0.03 (95% CI = -0.11 to 0.16) P = 0.70; consultation rate ratio 0.90 (95% CI = 0.70 to 1.15) P = 0.4; and number of medications 0.56 (95% CI = 0.47 to 1.6) P = 0.28. All differences favoured the acupuncture group. Imputation for missing values reduced the MYMOP adjusted mean difference to -0.4 (95% CI = -0.9 to 0.1) P = 0.12. Improvements in MYMOP and W-BQ12 were maintained at 52 weeks. CONCLUSION: The addition of 12 sessions of five-element acupuncture to usual care resulted in improved health status and wellbeing that was sustained for 12 months.

Self-care in people with long term health problems: a community based survey.

BACKGROUND: Self-care is a key component of current policies to manage long term conditions. Although most people with long-term health problems care for themselves within lay networks, consultation rates for long-term undifferentiated illness remain high. Promotion of self-care in these individuals requires an understanding of their own self-care practices and needs to be understood in the context of health care pluralism. The aim was to investigate the extent and nature of self-care practices in patients experiencing long term health problems, sources of information used for self-care, and use of other forms of health care (conventional health care and complementary and alternative medicine). METHODS: The study involved a cross-sectional community-based survey set in three general practices in South West England: two in urban areas, one in a rural area. Data were collected using a postal questionnaire sent to a random sample of 3,060 registered adult patients. Respondents were asked to indicate which of six long term health problems they were experiencing, and to complete the questionnaire in reference to a single (most bothersome) problem only. RESULTS: Of the 1,347 (45% unadjusted response rate) who responded, 583 reported having one or more of the six long term health problems and 572 completed the survey questionnaire. Use of self-care was notably more prevalent than other forms of health care. Nearly all respondents reported using self-care (mean of four self-care practices each). Predictors of high self-care reported in regression analysis included the reported number of health problems, bothersomeness of the health problem and having received a diagnosis. Although GPs were the most frequently used and trusted source of information, their advice was not associated with greater use of self-care. CONCLUSIONS: This study reveals both the high level and wide range of self-care practices undertaken by this population. It also highlights the importance of GPs as a source of trusted information and advice. Our findings suggest that in order to increase self-care without increasing consultation rates, GPs and other health care providers may need more resources to help them to endorse appropriate self-care practices and signpost patients to trusted sources of self-care support.

Cranial osteopathy for children with cerebral palsy: a randomised controlled trial.

OBJECTIVES: To estimate the effect of cranial osteopathy on the general health and wellbeing, including physical functioning, of children with cerebral palsy. DESIGN: Pragmatic randomised controlled trial. PARTICIPANTS: 142 children from Greater London and the South West of England, aged 5-12 years with cerebral palsy. INTERVENTION: Participants were randomised to six sessions of cranial osteopathy with a registered osteopath or a waiting list with partial attention control (parents invited to participate in two semistructured interviews). PRIMARY OUTCOME MEASURES: Blind assessment of motor function by physiotherapists using the Gross Motor Function Measure-66 (GMFM-66) and quality of life using the Child Health Questionnaire (CHQ) PF50 at 6 months. SECONDARY OUTCOME MEASURES: Parents' assessment of global health and sleep at 6 months, pain and sleep diaries at 10 weeks and 6 months, CHQ PF50 at 10 weeks and quality of life of main carer (Short Form 36) at 10 weeks and 6 months. RESULTS: Compared with children in the control group, children in the osteopathy group demonstrated no statistically significant differences in GMFM-66 (mean difference 4.9, 95% CI -4.4 to 14.1), CHQ Physical Summary Score (mean difference 2.2, 95% CI -3.5 to 8.0) or CHQ Psychological Summary Score (mean difference 3.4, 95% CI -0.8 to 7.7). There were no significant differences between groups with respect to pain; sleep (either 'time asleep' or 'time to sleep'); or main carer's quality of life. Compared with children in the control group, carers of children receiving cranial osteopathy were nearly twice as likely to report that their child's global health had 'improved' at 6 months rather than 'decreased' or 'remained the same' (38% vs 18%; odds ratio 2.8, 95% CI 1.1 to 6.9). CONCLUSIONS: This trial found no statistically significant evidence that cranial osteopathy leads to sustained improvement in motor function, pain, sleep or quality of life in children aged 5-12 years with cerebral palsy nor in quality of life of their carers.

Consulting parents about the design of a randomized controlled trial of osteopathy for children with cerebral palsy.

BACKGROUND: Although the UK Department of Health has advocated the involvement of service users and carers in health research for several years, there is little evidence about their contribution to the design of randomized controlled trials (RCTs). OBJECTIVE: To demonstrate how consulting parents about the design of a study, including which outcomes to use, led to the design and successful delivery of a RCT of osteopathy for children with cerebral palsy (CP). DESIGN: Semi-structured interviews were carried out with 20 parents of children with CP and other neurological conditions, asking them to choose between four different trial designs, to talk about noticeable changes in their child's condition and their views about payment for trial treatment. SETTING AND PARTICIPANTS: The parents interviewed were all members of Cerebra, a charity for 'brain-injured' children and young people. All interviews were carried out at the parents' homes. RESULTS: Parents had mixed views about possible trial designs; however, a waitlist design which allowed all children eventually to receive the treatment emerged as a clear favourite. Parents did not focus on isolated outcomes, but suggested a range of factors relevant to their child's quality of life. They expressed a clear preference for the costs of treatment to be funded by the trial. CONCLUSIONS: Involvement of parents helped design a trial which was acceptable to families and addressed outcomes that mattered to them. By consulting parents about the design of the research, the subsequent trial achieved excellent recruitment and retention rates.

Cancer patients' experiences of using complementary therapies: polarization and integration.

OBJECTIVE: The use of complementary therapies by people with cancer is commonplace. In a recent synthesis of 26 qualitative studies of patients' experiences of complementary therapy use after a diagnosis of cancer, the emergent theme of 'polarization' was the most notable barrier to a positive experience of complementary therapies. In this paper, we explore the two synthesis concepts of 'polarization' and 'integration', and their relationship to health service policies and guidelines on integrated services. METHODS: A systematic literature search and a meta-ethnography to synthesize key concepts. RESULTS: The majority of patients who used complementary therapies after a diagnosis of cancer wanted to be certain that the therapies were not interfering with their conventional cancer treatment. They valued the therapies in wider terms including: taking 'a niche of control', relieving symptoms, improving wellbeing, and promoting reconnection and social interaction. The emergent theme of 'polarization' suggested that conventional physicians who are perceived to be poorly informed or negative about complementary approaches induce patient anxiety, safety concerns, and difficulties in access. They may compromise their therapeutic relationship and, rarely, they may trigger patients to abandon conventional medicine altogether. In contrast, integrated advice and/or services were highly valued by patients, although some patients preferred their complementary health care to be provided in a non-medicalized environment. CONCLUSIONS: Our findings suggest that the current polarized situation is unhelpful to patients, detrimental to therapeutic relationships and may occasionally be dangerous. They indicate that complementary therapies, in a supportive role, should be integrated into mainstream cancer care.

Negotiating the boundary between medicine and consumer culture: online marketing of nutrigenetic tests.

Genomics researchers and policy makers have accused nutrigenetic testing companies--which provide DNA-based nutritional advice online--of misleading the public. The UK and USA regulation of the tests has hinged on whether they are classed as "medical" devices, and alternative regulatory categories for "lifestyle" and less-serious genetic tests have been proposed. This article presents the findings of a qualitative thematic analysis of the webpages of nine nutrigenetic testing companies. We argue that the companies, mirroring and negotiating the regulatory debates, were creating a new social space for products between medicine and consumer culture. This space was articulated through three themes: (i) how "genes" and tests were framed, (ii) how the individual was imagined vis a vis health information, and (iii) the advice and treatments offered. The themes mapped onto four frames or models for genetic testing: (i) clinical genetics, (ii) medicine, (iii) intermediate, and (iv) lifestyle. We suggest that the genomics researchers and policy makers appeared to perform what Gieryn (Gieryn, T.F. (1983). Boundary-work and the demarcation of science from non-science: strains and interests in professional ideologies of scientists. American Sociological Review, 48, 781-795.) has termed "boundary work", i.e., to delegitimize the tests as outside proper medicine and science. Yet, they legitimated them, though in a different way, by defining them as lifestyle, and we contend that the transformation of the boundaries of science into a creation of such hybrid or compromise categories is symptomatic of current historical times. Social scientists studying medicine have referred to the emergence of "lifestyle" products. This article contributes to this literature by examining the historical, regulatory and marketing processes through which certain goods and services become defined this way.

The patient's experience of holistic care: insights from acupuncture research.

OBJECTIVES: To characterize the diverse nature of peoples' experiences of acupuncture treatment for chronic health problems. Specifically, the paper addresses how this analysis deepens our understanding of holism and its relation to the therapeutic theory base. METHODS: A secondary analysis of five longitudinal interview studies using a constant comparative method. Patients experienced different types of acupuncture--traditional (based on Chinese medicine) and Western-style (based on biomedicine) in a variety of settings in the U.K. and Australia. RESULTS: The markedly different experiences of acupuncture treatment were best characterized in relation to the concept of holism. Being treated ;as a whole person' was associated with traditional acupuncture in both private and NHS practice, but not within a research trial setting. In the trial, both patients and practitioners ;played their part' in a scientific experiment. Holism was especially important to people with several health problems. DISCUSSION: The findings suggests that the experience of holistic care, in the sense of ;being treated as a whole person' is dependent on four factors: (a) the therapeutic theory that underpins the treatment; (b) structural factors such as time and setting; (c) the intention of the practitioner; and (d) the intention and needs of the patient.

Acupuncture as a complex intervention: a holistic model.

OBJECTIVES: Our understanding of acupuncture and Chinese medicine is limited by a lack of inquiry into the dynamics of the process. We used a longitudinal research design to investigate how the experience, and the effects, of a course of acupuncture evolved over time. DESIGN AND OUTCOME MEASURES: This was a longitudinal qualitative study, using a constant comparative method, informed by grounded theory. Each person was interviewed three times over 6 months. Semistructured interviews explored people's experiences of illness and treatment. Across-case and within-case analysis resulted in themes and individual vignettes. SUBJECTS AND SETTINGS: Eight (8) professional acupuncturists in seven different settings informed their patients about the study. We interviewed a consecutive sample of 23 people with chronic illness, who were having acupuncture for the first time. RESULTS: People described their experience of acupuncture in terms of the acupuncturist's diagnostic and needling skills; the therapeutic relationship; and a new understanding of the body and self as a whole being. All three of these components were imbued with holistic ideology. Treatment effects were perceived as changes in symptoms, changes in energy, and changes in personal and social identity. The vignettes showed the complexity and the individuality of the experience of acupuncture treatment. The process and outcome components were distinct but not divisible, because they were linked by complex connections. The paper depicts these results as a diagrammatic model that illustrates the components and their interconnections and the cyclical reinforcement, both positive and negative, that can occur over time. CONCLUSIONS: The holistic model of acupuncture treatment, in which "the whole being greater than the sum of the parts," has implications for service provision and for research trial design. Research trials that evaluate the needling technique, isolated from other aspects of process, will interfere with treatment outcomes. The model requires testing in different service and research settings.

Acupuncture for people with chronic illness: combining qualitative and quantitative outcome assessment.

OBJECTIVES: Many people with chronic disease seek acupuncture treatment, despite it being largely excluded from Western state-funded health care systems. What benefits and problems do such people perceive and experience as important? To what extent do three subjective health questionnaires encompass and measure these treatment effects? DESIGN AND OUTCOME MEASURES: A longitudinal qualitative study, using a constant comparative method, informed by grounded theory. Each person was interviewed three times over 6 months and before each interview participants completed three health status questionnaires, EuroQol, COOP-WONCA charts, and MYMOP2. Semistructured interviews used open-ended questions to explore peoples' experiences of illness and treatment, and then used the cognitive interview technique to discuss their questionnaire responses. SUBJECTS AND SETTINGS: Eight professional acupuncturists in seven different settings publicized the study to their patients. We interviewed a maximum variation sample of 23 people with chronic illness, who were having acupuncture for the first time. RESULTS: In addition to changes in their presenting symptoms people experienced whole-person effects that were characterized by changes in strength and energy, and changes in personal and social identity. These effects were distinct but not divisible because of their interdependence and their complex and individual development over time. The health status questionnaires varied in their ability to reflect and measure these changes, and the whole person effects were often missed. After 6 months some people had changed their treatment goals and some individuals were still seeing health improvement. One person found that acupuncture exacerbated her symptoms. CONCLUSIONS: Knowledge of the range, individuality, and varied temporal patterns of treatment outcomes can guide potential patients, clinicians, health care providers, and researchers. Qualitative methods have highlighted the strengths and weaknesses of different outcome questionnaires, and the importance of long-term follow-up. We plan to do further work on appropriate outcome questionnaire selection and development.

Self-treatment and its discussion in medical consultations: how is medical pluralism managed in practice?

Recent policy changes in the UK such as deregulation of prescribed medicines and the introduction of telephone helpline services are intended to promote self-treatment. Drawing on interviews with, and consultations between, 35 patients and 20 general practitioners, we use Kleinman's (Patients and Healers in the context of culture: an exploration of the Borderland between Anthropology, Medicine and Psychiatry, University of California Press Ltd., London) model of the three sectors of health care in order to examine the range of self-treatments people use and the discussion of these treatments in medical consultations. We argue that despite the availability of a range of treatment options and policy changes advocating greater use of self-treatment, patients are inhibited from disclosing prior self-treatment, and disclosure is affected by patients' perceptions of the legitimacy of self-treatment. The findings are in keeping with Cant and Sharma's (A New Medical Pluralism, Alternative Medicines, Doctors, Patients and the State, UCL Press, London) contention that although there has been a pluralisation of "legitimate" providers of health care and a restructuring of expertise, biomedicine itself remains dominant.