Investigating preferences for support with life after stroke: a discrete choice experiment.

BACKGROUND: There is little evidence of service user preferences to guide the commissioning and improvement of services that support life after stroke. We report the first investigation of patients' and family carers' preferences for community services after stroke using a discrete choice experiment (DCE). METHODS: Two workshops with patients and family carers (n = 8) explored stroke experiences, identifying attributes important in shaping views about service design, and piloted data collection strategies. Attributes were group versus individual support; service provider; additional support for social and leisure activities; and the total time required to access services. Patients and family carers were recruited six months post stroke-onset (mean 331 days) from four stroke services, and invited to participate in the DCE. Patients' general health (EQ5D) and functional dependence (Barthel Index) were also assessed. Of 474 eligible patients, 144 (30%) expressed an interest in the study, and 80 (56%) of these completed the survey questionnaire. 34 of 74 (46%) family carers recruited through patients completed the DCE. RESULTS: All four attributes were significant in shaping patients preferences for stroke support service delivery (p < 0.05), confirming the interpretation of workshop findings. Patients prefer help and support for emotional needs, communication problems and physical difficulties to be provided on an individual basis; and to be offered additional social and leisure activities that they are able to attend on their own. Patients would appear to prefer that voluntary organisations do not provide these services, although this may be linked to lack of experience of these services. Family carers would prefer help and support in their caring role on a one-to-one basis. Whilst health related quality of life is associated with preference for format of service, results were relatively consistent across sub-groups, with the exception of time since stroke, where social and leisure activities had a greater impact on preferences of established service users. CONCLUSIONS: The data provide unique insights into how preferences for community services that support life after stroke are shaped. This information can be used to inform both service re-design, and barriers to implementation that will need to be accounted for in policy shifts towards a more mixed economy of service provision.

Implementing the evidence for language-appropriate health care systems: The Welsh context.

Like Canada, Wales, UK is a bilingual nation: the Welsh language is an important part of its national identity and legislative framework. This has implications for the delivery of public sector services, particularly in the context of health and social care, where responding to the language needs of service users is fundamental to quality health care provision. Nevertheless, despite the strengthening policy commitment for a whole-system approach towards enhancing Welsh language services, there is a paucity of evidence to guide best practice in organizational planning in health care settings. This commentary outlines the context and significance of bilingual health care provision in Wales and the implications for building and embedding the evidence base. It calls for further work to translate our knowledge and understanding of language-appropriate practice to provide more effective and sensitive health care services; and to close the implementation gap between evidence and practice. Given the relevance of this challenge for health care providers in Canada who plan and deliver services for French-language minorities, this approach has resonance across our research communities. Thus, in our common pursuit to establish integrated knowledge translation research for language-appropriate health care systems, this commentary offers a focus for reflection, discussion and collaborative action.

Enhancing rigour in the validation of patient reported outcome measures (PROMs): bridging linguistic and psychometric testing.

BACKGROUND: A strong consensus exists for a systematic approach to linguistic validation of patient reported outcome measures (PROMs) and discrete methods for assessing their psychometric properties. Despite the need for robust evidence of the appropriateness of measures, transition from linguistic to psychometric validation is poorly documented or evidenced. This paper demonstrates the importance of linking linguistic and psychometric testing through a purposeful stage which bridges the gap between translation and large-scale validation. FINDINGS: Evidence is drawn from a study to develop a Welsh language version of the Beck Depression Inventory-II (BDI-II) and investigate its psychometric properties. The BDI-II was translated into Welsh then administered to Welsh-speaking university students (n = 115) and patients with depression (n = 37) concurrent with the English BDI-II, and alongside other established depression and quality of life measures. A Welsh version of the BDI-II was produced that, on administration, showed conceptual equivalence with the original measure; high internal consistency reliability (Cronbach's alpha = 0.90; 0.96); item homogeneity; adequate correlation with the English BDI-II (r = 0.96; 0.94) and additional measures; and a two-factor structure with one overriding dimension. Nevertheless, in the student sample, the Welsh version showed a significantly lower overall mean than the English (p = 0.002); and significant differences in six mean item scores. This prompted a review and refinement of the translated measure. CONCLUSIONS: Exploring potential sources of bias in translated measures represents a critical step in the translation-validation process, which until now has been largely underutilised. This paper offers important findings that inform advanced methods of cross-cultural validation of PROMs.

The role of midwives and health visitors in promoting intergenerational language maintenance in the bilingual setting: perceptions of parents and health professionals.

AIMS AND OBJECTIVES: The increasing status and regard of indigenous minority languages across Europe, means the advantages of bilingualism for individuals and communities are now well established. We set out to elicit parents' and health professionals' views of the role of health visitors and midwives in promoting bilingualism in the family and to consider whether health professionals acknowledge the contribution that bilingualism makes to public health. BACKGROUND: A three-year study was completed to measure the impact of a language transmission initiative which depends on the input of midwives and health visitors with new parents and how its effect could be improved. This paper reports on one element of that study. DESIGN: A qualitative approach was used. METHODS: Six focus group interviews were conducted with health visitors and midwives and 33 postnatal interviews were completed with parents across four counties in Wales. Thematic content analysis was undertaken by two researchers, a third trailed decision processes and scrutinised categories and themes. RESULTS: Findings suggest that health visitors and midwives perceive their roles relating to the promotion of bilingualism differently. Influences on their involvement include their language profile, contact with parents, personal experience, timing of the interaction and time in their workload. The relationship between promoting bilingualism and public health was accepted by some and denied by others. Data from the interviews with parents suggested that few health professionals discuss issues of language transmission with new parents. CONCLUSIONS: Some individual health visitors and midwives are willing to promote bilingualism with parents. However, there are challenges in enlisting the support of health visitors and midwives to discuss language transmission and bilingualism with parents. RELEVANCE TO CLINICAL PRACTICE: These findings challenge practitioners to consider their role in promoting bilingualism and its effect on public health and suggest the need for more defined responsibilities.

Exploring decision making in intellectual disability nursing practice: a qualitative study.

Due to the dearth of relevant research, intellectual disability nurses may have difficulty identifying sources of evidence on which they can base their clinical decisions. The aim of the present research was to explore how intellectual disability nurses make decisions and how their decisions are influenced by evidence. The method was guided by interpretative phenomenology and the analysis adopted an idiographic approach. Twelve National Health Service intellectual disability nurses in Wales participated in semi-structured interviews. Four key themes were identified: getting to know the person; working as a team; evidence to support decision making; and understanding of evidence-based practice. In the context of the myriad of other professionals involved in caregiving, the nurses conveyed a commitment towards ensuring that the person with intellectual disability is at the centre of decision making. Although using empirical evidence to support practice was acknowledged, these nurses considered person centred decision making to be paramount.

Identifying priorities for establishing bilingual provision in nurse education: a scoping study.

Research evidence demonstrates that offering language choice to patients enhances the quality of healthcare provision. This has implications for the preparation of nurses for practice in bilingual settings, where legislation often leads to demands for health services in both languages and bilingual competence amongst healthcare providers. This paper reports on a scoping study of bilingual provision in nurse education in the bilingual context of Wales, UK, as a means of informing the evidence base for national strategic planning. The study incorporated three elements: (i) literature analysis (ii) policy review and (iii) stakeholder consultation (n=70). Six themes emerged from the stakeholder consultation, reflecting the main drivers and barriers associated with bilingual provision in course delivery. These themes aligned with findings identified from the policy and literature review that related to strategic, organisational and individual influences on bilingual educational provision. Strategic planning for bilingual provision in nurse education in Wales should take account of the factors that affect provision at different levels. These factors feature across bilingual settings outside the UK, thus giving the study international relevance and scope to inform the delivery of nurse education that meets the needs of wider diverse language communities.

Using the critical incident technique to explore student nurses' perceptions of language awareness.

Current evidence demonstrates that language awareness in nursing contributes to high quality patient care. Although language awareness amongst qualified nurses has been considered, there is a dearth of literature that examines how student nurses respond to language sensitivity in the healthcare setting. The critical incident technique was used to elicit the perceptions of student nurses regarding language awareness. Twenty students produced written descriptions of incidents that they had encountered during clinical practice and they subsequently reflected on these incidents. Data were analysed using framework analysis whereby meaning units were organised into themes and categories. Four distinct themes emerged from the analysis; namely, facilitating language choice, vulnerable groups, quality of care and student learning. Each theme was characterised by a number of subcategories. Student nurses identified positive and negative instances of language matters in health care that are driven by personal and organisational strategies and impact on patient care and student learning. Student nurses were conscious of the influence of language awareness on patient care and noted that structural and process elements relating to language awareness were in play in the healthcare setting. Moreover, they indicated that the consequent outcomes of these elements influenced the quality of care and student learning.

Using cluster analysis to explore survey data.

Llinos Haf Spencer reports on the use of the cluster analysis statistical technique in nursing research and uses data from the Welsh Language Awareness in Healthcare Provision in Wales survey as an exemplar She concludes that cluster analysis is a valuable tool to tease out patterns in data that are not initially evident in bivariate analyses and thus should be considered as a viable option for nursing research.

Language awareness in the bilingual healthcare setting: a national survey.

BACKGROUND: The significance of effective interpersonal communication in healthcare is well established, as is the importance of overcoming language barriers. This has a particular bearing for minority language speakers, where denying language choice can compromise the quality of healthcare provision. Nevertheless, there is limited empirical research exploring language awareness in healthcare and the factors that influence language choice for minority language speakers. OBJECTIVES: This paper reports on the nurses, midwives and health visitors (NMHV) data set of the first phase of a large-scale national study, commissioned by the Welsh Assembly Government, to examine the nature and extent of Welsh language awareness amongst healthcare professionals in Wales, UK. DESIGN: The study involved a questionnaire survey of healthcare professionals working in the public, private and voluntary sectors of healthcare. PARTICIPANTS: A stratified random sample of 3358 healthcare professionals was surveyed, of which 1842 (55%) were nurses, midwives and health visitors. The researcher-designed self-administered questionnaire was distributed by post to participants between July and September 2003. A total of 1042 (57%) NMHV returned their questionnaires for analysis. RESULTS: A strong positive correlation is identified between the NMHV use of the Welsh language in practice and their Welsh language proficiency (p<.01); language attitudes (p<.01); and language region (p<.01). Mean language attitude scores are more positive than expected, particularly amongst those with limited Welsh language proficiency and those working in regions with the lowest proportions of Welsh speakers. CONCLUSIONS: In view of the universal drive for culturally and linguistically appropriate healthcare practice, the findings have important implications for bilingual and multilingual healthcare settings worldwide. The evidence emerging from this survey confirms that cross-cultural communication is enhanced by NMHV language attitudes as well as their proficiency levels. Language awareness training is therefore recommended as a way of enhancing care delivery for minority language speakers.

Communicative sensitivity in the bilingual healthcare setting: a qualitative study of language awareness.

AIM: This paper reports on the second phase of a national study in Wales. The research aimed to assess the level of Welsh language awareness amongst healthcare professionals across Wales, and to identify the factors that enhance language choice within service delivery. BACKGROUND: The literature suggests that language sensitive healthcare practice is central to ensuring high quality care. However, it is evident that language barriers continue to compromise the quality of care within nursing and other health services. One issue that has received little attention is the level of language awareness that healthcare professionals currently demonstrate. Furthermore the factors that influence language choice for bilingual/multilingual speakers are not well explored in the literature. METHODS: The study involved semi-structured interviews with a range of healthcare professionals in acute and community settings across Wales. Using a systematic sampling matrix, a purposeful sample of 83 professionals was selected to participate. Twenty-seven of the respondents were nurses, health visitors and midwives. The interviews focussed on the factors that facilitate or impede language sensitive healthcare practice. All interviews were audiotaped and, using a framework analysis approach, conceptual codes were developed and defined and categories and sub-categories were constructed to create thematic charts. FINDINGS: Three main themes were identified: care enhancement, which focussed on the process and outcome of offering language choice to bilingual patients; organizational issues, which reflected issues relating to the infrastructure of service provision; and training implications, which focused on Welsh language learning in health care. CONCLUSIONS: Complex dynamics of language use are in operation within bilingual healthcare settings and organizational as well as individual factors are important in facilitating appropriate language use. Many of the issues highlighted are not peculiar to the Welsh context, but apply to healthcare settings across the world, where other minority languages are in use.

Describing chronic pain: towards bilingual practice.

This paper reports on the findings of a pilot study that collated and categorised a range of Welsh-medium chronic pain descriptors and their conceptually equivalent English translations in order to provide a preliminary basis for chronic pain assessment amongst patients in the bilingual community of North West Wales. The results demonstrate the unique and complex nature of individual pain experiences and the challenges of meaningful interpretation, particularly when patient and practitioner do not share a common preferred language. Detailed analysis of the descriptors provided valuable insight into the patient's world, revealing cultural patterns of beliefs and behaviours as well as the suffering associated with chronic pain. Implications for improving chronic pain assessment amongst bilingual speakers are explored.

Nurse/patient communication within a bilingual health care setting.

Communication and the interactions that take place between nurse and patient are the foundation of nursing care. However, in practice, cross-cultural communication is often inadequate and therefore the health care needs of many cultural groups are not being met. An examination of language switching within nurse/patient interaction in a bilingual setting provides a further dimension for the study of cross-cultural communication.