Exploring access to end of life care for ethnic minorities with end stage kidney disease through recruitment in action research

BACKGROUND: Variation in provision of palliative care in kidney services and practitioner concerns to provide equitable access led to the development of this study which focussed on the perspectives of South Asian patients and their care providers. As people with a South Asian background experience a higher risk of Type 2 Diabetes (T2DM) and end stage kidney failure (ESKF) compared to the majority population but wait longer for a transplant, there is a need for end of life care to be accessible for this group of patients. Furthermore because non English speakers and people at end of life are often excluded from research there is a dearth of research evidence with which to inform service improvement. This paper aims to explore issues relating to the process of recruitment of patients for a research project which contribute to our understanding of access to end of life care for ethnic minority patients in the kidney setting. METHODS: The study employed an action research methodology with interviews and focus groups to capture and reflect on the process of engaging with South Asian patients about end of life care. Researchers and kidney care clinicians on four NHS sites in the UK recruited South Asian patients with ESKF who were requiring end of life care to take part in individual interviews; and other clinicians who provided care to South Asian kidney patients at end of life to take part in focus groups exploring end of life care issues. In action research planning, action and evaluation are interlinked and data were analysed with emergent themes fed back to care providers through the research cycle. Reflections on the process of patient recruitment generated focus group discussions about access which were analysed thematically and reported here. RESULTS: Sixteen patients were recruited to interview and 45 different care providers took part in 14 focus groups across the sites. The process of recruiting patients to interview and subsequent focus group data highlighted some of the key issues concerning access to end of life care. These were: the identification of patients approaching end of life; and their awareness of end of life care; language barriers and informal carers' roles in mediating communication; and contrasting cultures in end of life kidney care. CONCLUSIONS: Reflection on the process of recruitment in this action research study provided insight into the complex scenario of end of life in kidney care. Some of the emerging issues such as the difficulty identifying patients are likely to be common across all patient groups, whilst others concerning language barriers and third party communication are more specific to ethnic minorities. A focus on South Asian ethnicity contributes to better understanding of patient perspectives and generic concepts as well as access to end of life kidney care for this group of patients in the UK. Action research was a useful methodology for achieving this and for informing future research to include informal carers and other ethnic groups.Peer reviewedFinal Published versio

Nature and Environment in the Achterhoek. Testing the Decision Support System "the Nature Planner" on a regional scale - a pilot study

Available from the Provincie Gelderland by telephone: 026 3599000De aanleiding voor deze studie vormde de behoefte bij het Ministerie van VROM om te komen tot operationele methoden, die kunnen bijdragen aan de onderbouwing van het gebiedsgerichte (milieu)beleid op regionale schaal. Het RIVM heeft voor haar nationale planbureau-taken de Natuurplanner ontwikkeld. Dit systeem omvat een keten van modellen waarmee de effecten van abiotische milieucondities (verzuring, verdroging en vermesting) op de flora kunnen worden bepaald. De vier doelstellingen van het project waren: (1) Toetsen van de bruikbaarheid van de uitkomsten van de Natuurplanner op regionale schaal, waarbij de invoergegevens zijn ontleend aan landelijke en landsdekkende registraties en basisbestanden. (2) Nagaan van de mogelijkheden om de gegevensbasis uit te breiden met specifieke gegevens van de provincie Gelderland. (3) Verkennen van de toegevoegde waarde van deze extra informatie ten opzichte van de landelijke gegevens. (4) Verkrijgen van inzicht in de toepassingsmogelijkheden van de Natuurplanner ter ondersteuning van het proces van beleidsontwikkeling en maatwerk op gebiedsniveau voor de relatie milieu en natuur.The background for this study stemmed from the need of the Ministry of VROM (Housing, Spatial Planning and teh Environment) to develop operational methods to enhance the support of environmental policy on the regional scale. In the framework of its tasks as the Nature Policy Assessment Office RIVM has developed the Nature Planner. This system comprises a model chain to establish the effects of environmental factors (acidification, nitrification and dessication) on flora. The four goals of the project were: (1) Testing whether the output of the Nature Planner can be used on a regionale scale, while the input is on nationale-scale level. (2) Identifying the possibilites to extend the national data sets (3) Exploring the additional value of the extra information compared to the national data. (4) Exploring the possibilites of the Nature Planner to support the process of policy-making and a regional approach for the relationship nature of to environment.DG