Women's perspectives on human papillomavirus self-sampling in the context of the UK cervical screening programme.

BACKGROUND: Testing for human papillomavirus (HPV) is being incorporated into the cervical screening programme, with the probable future introduction of HPV as a primary test and a possibility of HPV self-sampling. In anticipation of this development, we sought to inform future policy and practice by identifying potential barriers to HPV self-sampling. METHODS: A cross-sectional survey of 194 women aged 20-64 years was conducted. Logistic regression analysis was used to identify determinants of self-sampling intentions. A purposive subsample of 19 women who reported low self-sampling intentions were interviewed. Interviews were framework-analysed. RESULTS: Most survey participants (N=133, 69.3%) intended to HPV self-sample. Lower intention was associated with lower self-efficacy (OR=24.96, P≤.001), lower education (OR=6.06, P≤.05) and lower perceived importance of HPV as a cause of cervical cancer (OR=2.33, P≤.05). Interviews revealed personal and system-related barriers. Personal barriers included a lack of knowledge about HPV self-sampling, women's low confidence in their ability to self-sample correctly and low confidence in the subsequent results. System-related factors included a lack of confidence in the rationale for modifying the current cervical screening programme, and concerns about sample contamination and identity theft. CONCLUSIONS: Insights gained from this research can be used to guide further enquiry into the possibility of HPV self-sampling and to help inform future policy and practice. Personal and system-related barriers including low confidence in the reasons for changing current cervical screening provision need to be addressed, should HPV self-sampling be incorporated into the cervical screening programme.

'Distributed health literacy': longitudinal qualitative analysis of the roles of health literacy mediators and social networks of people living with a long-term health condition.

BACKGROUND: The role of one's social network in the process of becoming health literate is not well understood. We aim to explain the 'distributed' nature of health literacy and how people living with a long-term condition draw on their social network for support with health literacy-related tasks such as managing their condition, interacting with health professionals and making decisions about their health. DESIGN: This paper reports a longitudinal qualitative interview and observation study of the development and practice of health literacy in people with long-term health conditions, living in South Wales, UK. Participants were recruited from health education groups (n = 14) and community education venues (n = 4). The 44 interview transcripts were analysed using the 'Framework' approach. RESULTS: Health literacy was distributed through family and social networks, and participants often drew on the health literacy skills of others to seek, understand and use health information. Those who passed on their health literacy skills acted as health literacy mediators and supported participants in becoming more health literate about their condition. The distribution of health literacy supported participants to manage their health, become more active in health-care decision-making processes, communicate with health professionals and come to terms with living with a long-term condition. Participants accessed health literacy mediators through personal and community networks. CONCLUSION: Distributed health literacy is a potential resource for managing one's health, communicating with health professionals and making health decisions.

How hard can it be to include research evidence and evaluation in local health policy implementation? Results from a mixed methods study.

BACKGROUND: Although an evidence-based approach is the ideal model for planning and delivering healthcare, barriers exist to using research evidence to implement and evaluate service change. This paper aims to inform policy implementation and evaluation by understanding the role of research evidence at the local level through implementation of a national chronic conditions management policy. METHODS: We conducted a national email survey of health service commissioners at the most devolved level of decision-making in Wales (Local Health Boards - LHBs) followed by in-depth interviews with representatives of LHBs, purposively selecting five to reflect geographic and economic characteristics. Survey data were analysed descriptively; we used thematic analysis for interview data. RESULTS: All LHBs (n = 22) completed questionnaires. All reported they routinely assessed the research literature before implementing interventions, but free-text answers revealed wide variation in approach. Most commonly reported information sources included personal contacts, needs assessments, information or research databases. No consistent approach to evaluation was reported. Frequently reported challenges were: insufficient staff capacity (17/22); limited skills, cost, limited time, competing priorities (16/22); availability and quality of routine data (15/22). Respondents reported they would value central guidance on evaluation.Five interviews were held with managers from the five LHBs contacted. Service delivery decisions were informed by Welsh Government initiatives and priorities, budgets, perceived good practice, personal knowledge, and local needs, but did not include formal research evidence, they reported. Decision making was a collaborative process including clinical staff, patient representatives, and partner organization managers with varying levels of research experience. Robust evaluation data were required, but they were constrained by a lack of skills, time, and resources. They viewed evaluation as a means of demonstrating that targets had been met. CONCLUSIONS: There is a gap between evidence-based aims of national health policy and how health services are commissioned, implemented, and evaluated at local level. Commissioners and managers are unable to routinely incorporate research evidence. If health services research is to identify most effective ways to implement high quality care, it should be incorporated into commissioning and service delivery. Local commissioners and managers need to build the critical use of research evidence and evaluation into health policy implementation at local level in order to provide consistent and effective healthcare services.

Framing patient consent for student involvement in pelvic examination: a dual model of autonomy.

Patient consent has been formulated in terms of radical individualism rather than shared benefits. Medical education relies on the provision of patient consent to provide medical students with the training and experience to become competent doctors. Pelvic examination represents an extreme case in which patients may legitimately seek to avoid contact with inexperienced medical students particularly where these are male. However, using this extreme case, this paper will examine practices of framing and obtaining consent as perceived by medical students. This paper reports findings of an exploratory qualitative study of medical students and junior doctors. Participants described a number of barriers to obtaining informed consent. These related to misunderstandings concerning student roles and experiences and insufficient information on the nature of the examination. Participants reported perceptions of the negative framing of decisions on consent by nursing staff where the student was male. Potentially coercive practices of framing of the decision by senior doctors were also reported. Participants outlined strategies they adopted to circumvent patients' reasons for refusal. Practices of framing the information used by students, nurses and senior doctors to enable patients to decide about consent are discussed in the context of good ethical practice. In the absence of a clear ethical model, coercion appears likely. We argue for an expanded model of autonomy in which the potential tension between respecting patients' autonomy and ensuring the societal benefit of well-trained doctors is recognised. Practical recommendations are made concerning information provision and clear delineations of student and patient roles and expectations.

The development of health literacy in patients with a long-term health condition: the health literacy pathway model.

BACKGROUND: Inadequate health literacy has been associated with poor management of long-term health conditions and has been identified as a key social determinant of health outcomes. However, little is understood about how health literacy might develop over time or the processes by which people may become more health literate. Our objectives were to describe how patients with a long-term condition practice health literacy in the management of their health and communication with health professionals, how they become more health literate over time and their experience of using health services. We also sought to identify and describe the motivations, facilitators and barriers in the practice of health literacy in healthcare consultations. METHODS: We designed a longitudinal qualitative study using serial interviews with 18 participants to explore their experiences of learning to manage their condition and their experiences of health literacy when participating in healthcare processes. Participants were recruited from patient education programmes and were interviewed three times over a period of 9 months. A framework approach was used to analyse data. RESULTS: A model is presented that illustrates the development of health literacy along a trajectory that includes the development of knowledge, health literacy skills and practices, health literacy actions, abilities in seeking options and informed and shared decision making opportunities. Motivations and barriers to developing and practising health literacy skills partly reflected participants' characteristics but were also influenced by health professionals. Some participants developed their health literacy to a point where they became more involved in healthcare processes (including informed and shared decision-making). CONCLUSIONS: Patients with a long-term condition can develop health literacy skills over time and put their skills into practice in becoming more active in healthcare consultations. Our findings have implications for developing health literacy interventions aimed at patient involvement in healthcare processes and improved self-management of long-term conditions.

What constitutes consent when parents and daughters have different views about having the HPV vaccine: qualitative interviews with stakeholders.

OBJECTIVE: The UK Human Papillomavirus (HPV) vaccine programme commenced in the autumn of 2008 for year 8 (age 12-13 years) schoolgirls. We examine whether the vaccine should be given when there is a difference of opinion between daughters and parents or guardians. DESIGN: Qualitative study using semi-structured interviews. PARTICIPANTS: A sample of 25 stakeholders: 14 professionals involved in the development of the HPV vaccination programme and 11 professionals involved in its implementation. RESULTS: Overriding the parents' wishes was perceived as problematic and could damage the relationship between school and parents. A number of practical problems were raised in relation to establishing whether parents were genuinely against their daughter receiving the vaccine. Although many respondents recognised that the Gillick guidelines were relevant in establishing whether a girl could provide consent herself, they still felt that there were significant problems in establishing whether girls could be assessed as Gillick competent. In some areas school nurses had been advised not to give the vaccine in the absence of parental consent. None of the respondents suggested that a girl should be vaccinated against her consent even if her parents wanted her to have the vaccine. CONCLUSIONS: While the Gillick guidelines provide a legal framework to help professionals make judgements about adolescents consenting to medical treatment, in practice there appears to be variable and confused interpretation of this guidance. Improved legal structures, management procedures and professional advice are needed to support those who are assessing competence and establishing consent to vaccinate adolescents in a school setting.

Can promoting patient decision making be exclusionary? Moral expectations and cultural difference in the narratives of UK maternity clinicians.

Patient autonomy in health care decision making is increasingly advocated as a means of promoting patients' 'responsibilities' for treatments and costs. However, little is known with regard to clinicians' understanding of patients' potential responsibilities in decision making. We explore how clinicians may view decision making as a 'moral' obligation and examine how moral virtue is discursively constructed in this context and in the face of ethnic and social difference. Data reported are derived from an interview study that examined perceptions of maternity decision making among Arab Muslim women and clinicians. Results reported here are from the clinician sample which includes obstetricians, general practitioners (GPs) and midwives. Clinicians perceived that a key element of their role involved imparting relevant information to their clients and, increasingly, involving them in making autonomous decisions about their care. However, by analysing and assessing the attribution of specific cultural differences in clinicians' discussion of decision making processes with minority group women, we demonstrate how some clinicians justified their failure to promote autonomy through shared decision making with women from these groups. We will demonstrate these attributes to be those of passivity and non-rationality which entail some negative moral judgements and which have a complex relationship to gender and power

The health, social care and housing needs of lesbian, gay, bisexual and transgender older people: a review of the literature.

This paper reports the findings of a literature review of the health, social care and housing needs of older lesbian, gay, bisexual and transgender (LGBT) adults undertaken in 2006 for the Welsh Assembly Government. Peer-reviewed literature was identified through database searches of BNI, PubMed, CINAHL, DARE, ASSIA and PsychInfo. Follow-up searches were conducted using references to key papers and journals as well as specific authors who had published key papers. A total of 187 papers or chapters were retrieved, of which 66 were included in the study; major themes were identified and the findings synthesised using a meta-narrative approach. The main themes that emerged from the review were isolation, health behaviours, mental health and sexual health behaviours. The literature indicates that the health, social care and housing needs of LGBT older people is influenced by a number of forms of discrimination which may impact upon the provision of, access to and take up of health, social care and housing services. Understanding of the health, social care and housing needs of older LGBT people is limited and research in this area is scarce. The research which exists has been criticised for using small samples and for tending to exclude participants from less affluent backgrounds. The focus of research tends to be on gay men and lesbians; consequently, the needs of bisexual and transgender people remain largely unknown. Additionally, research which does exist tends to focus on a narrow range of health issues, often related to the health needs of younger LGBT people. Discrimination in various forms has a major impact on needs and experiences, leading to marginalisation of LGBT people both in the provision of health and social care services and neglect of these groups in public health research.

What are the external influences on information exchange and shared decision-making in healthcare consultations: a meta-synthesis of the literature.

OBJECTIVE: To review the literature to identify external influences on information exchange and shared decision-making in healthcare consultations and conceptualise how information is used both outside and within a consultation. METHODS: A 'meta-study' approach (meta-data-analysis, meta-theory, meta-method, and meta-synthesis) was used to locate, review, synthesise and summarise the findings, methodology, theoretical orientation and interpretation of qualitative research papers. RESULTS: In a model of external influences on information exchange within healthcare consultations, practitioner influences were: receptiveness to informed patients and patient choice, lack of knowledge of cultural difference, patient centredness vs. stereotyping. Patient influences were: motivation to seek and engage with information; the appraisal of information before a consultation, expression of cultural identity, and ways of managing the risk of poor information. Shared influences were: differing illness notions, role expectations and language. Empowerment, disempowerment and non-empowerment were outcomes of information exchange and health literacy was a mediator of external influences and empowerment. CONCLUSION: This meta-study provides a conceptualisation of external influences on information exchange in shared decision-making where health literacy mediates patient related influences and is also an influence on empowerment. PRACTICE IMPLICATIONS: Our model can inform the development of interventions aimed at improving information exchange and shared decision-making, potentially contributing to more equitable healthcare encounters.

Advocating mandatory patient 'autonomy' in healthcare: adverse reactions and side effects.

Promoting patient autonomy has become a key imperative in health service encounters. We will examine the potential negative effects of over-promoting patient autonomy and consider the impact on patient access, their experience and the provision of equitable services by focusing on an extreme manifestation of this trend, i.e. calls for patient involvement in health care decision making to be mandatory. Advocates of mandatory autonomy hold that patients have a duty to themselves, to society and to the medical system to make decisions on their health care independently. Models of mandatory autonomy may be contrasted to those of optional autonomy that seek to ascertain patients' decisional preferences and to understand wider limitations on their freedom to choose. Where choice as decisional responsibility becomes mandatory it ceases to promote agency and where autonomous choice is understood as an individualistic practice it will contribute to the cultural dominance of Western values. Moreover, taking a view that principlist ethics needs to take account of the social and cultural contexts of individual lives, we argue that if mandatory autonomy were to be over-emphasised as part of an ongoing move towards patient choice in UK National Health Service (NHS), educated and affluent people would be more able to exercise choices at the expense of people who are experienced in asserting preferences and who have the resources to make use of choices. We will argue that the promotion of autonomy needs to be tempered by steps to enable less powerful social, cultural and economic groups to contribute to decision making and to support individuals who may feel abandoned by having decisional responsibility transferred to them. Until constraints on individual choice can be understood and addressed, we advocate the model of optional autonomy used in shared decision making and make recommendations for practice, policy, education and research.