Rhetoric and reality: critical review of language policy and legislation governing official minority language use in health and social care in Wales

A concerted attempt is being made by the Welsh Government to revitalize the Welsh language in Wales through language legislation and policy initiatives. This paper explores the political rhetoric and practical reality of these recent legislative developments, as they pertain to the health care sector. It offers a qualitative analysis of written evidence provided by key stakeholders during the consultation process on the new legally-binding requirements of Welsh Language Standards for health care providers in Wales. We argue that these meso-level service providers are critical linchpins within the health care system and that it is at the meso level that full tensions between the macro rhetoric and micro reality occur. This contribution highlights shortcomings and barriers to Welsh language service provision in health care in Wales and recommends the adoption of wide-ranging, holistic approaches to language planning that meet the language needs of patients outlined by the Welsh Government.Le gouvernement gallois mène présentement une action concertée en vue de revitaliser la langue galloise au pays de Galles grâce à des mesures législatives et à des initiatives stratégiques en matière linguistique. Cet article explore la rhétorique politique et la réalité pratique de ces récents développements législatifs en ce qui a trait aux soins de santé. Il propose une analyse qualitative des preuves écrites fournies par les principales parties prenantes lors du processus de consultation sur les nouvelles exigences juridiquement contraignantes des normes de conduite concernant l’emploi de la langue galloise, applicables aux prestataires de soins de santé. Nous soutenons que ces prestataires de services de niveau intermédiaire sont des pivots essentiels du système de santé et que c’est au niveau intermédiaire que les tensions entre macro-rhétorique et micro-réalité se produisent. Notre analyse met en évidence les lacunes et les obstacles à la prestation de services en gallois dans les soins de santé au pays de Galles et recommande l’adoption d’approches holistiques dans la planification linguistique qui répondent aux besoins linguistiques des patients décrits par le gouvernement.Gwelir ymgais gan Lywodraeth Cymru i adfywio’r Gymraeg yng Nghymru trwy bolisi iaith a deddfwriaeth. Mae’r papur hwn yn archwilio i’r rhethreg wleidyddol a’r realiti ymarferol y datblygiadau deddfwriaethol diweddar hyn, yn benodol yn y sector gofal iechyd. Mae’r papur hwn yn cynnig dadansoddiad o’r dystiolaeth ysgrifenedig a gasglwyd gan rhanddeiliaid yn ystod y broses ymgynghori i ofynion cyfreithiol Safonau’r Iaith Cymraeg ar gyfer darparwyr gofal iechyd yng Nghymru. Rydym yn dadlau fod y darparwyr gwasanaethau lefel meso hyn yn gyswllt hanfodol yn y system gofal iechyd a’i bod yn lleoliad ble mae tensiynau rhwng rhethreg lefel macro Llywodraeth Cymru a realiti lefel micro’r darparwyr gwasanaeth iechyd yn cael ei amlygu. Mae’r cyfraniad hwn yn tynnu sylw at ddiffygion a rhwystrau i ddarpariaeth gwasanaethau iaith Cymraeg mewn gofal iechyd yng Nghymru ac yn argymell mabwysiadu dulliau cyfannol eang o gynllunio iaith sy’n diwallu anghenion iaith cleifion a amlinellwyd gan Lywodraeth Cymru

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

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\u27s 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.<br /

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

Abstract 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.</p

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

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