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Background: The Health of the Nation Outcomes Scales for people with Learning Disabilities (HoNOS-LD) is an 18-item measure which provides a structured and standardized approach to rating various clinical and psychosocial outcomes and has been in use nationally since 2002. Aims: To revise and improve the HoNOS-LD's utility in contemporary intellectual disability (ID) services whilst retaining its original objectives and five-point severity ratings. Method: ID clinicians were invited to complete an online survey, rating each item on the existing measure for being fit for purpose, identifying issues and suggesting improvements based on their experience of using the HoNOS-LD in practice. Scales were then assessed and revised sequentially; survey responses were used to inform discussion and revisions to the HoNOS-LD by the Advisory Board. Results: A total of 75 individuals replied. Respondents had used HoNOS-LD for an average of 8.0 years (S.D. 5.28 years) and 88% found the scale to be useful in their practice. On average, respondents used HoNOS-LD ratings to inform care 42.4% of the time (S.D. 33.5%). For each scale there was a significant negative correlation between the percentage of positive/very positive respondent ratings and the number of changes proposed. Common changes included simplifying terms, reducing ambiguity and replacing anachronistic language. Conclusion: The changes outlined in this paper are based on the advisory group's expert consensus. These changes are intended to improve reliability and validity but now need empirical testing as well as review by service users. [ABSTRACT FROM AUTHOR]

Children can sometimes find it difficult to articulate their experiences if they have to rely solely on words. Giving children the opportunity to use arts-based research approaches can support their participation in research and create a bridge that enables them to express their perspectives and feelings. This paper focuses on the ethical and practical considerations when using photo elicitation interviews (PEI) in research with children. The discussion and examples provided are drawn from an international study that used auto-driven PEI, where photographs are taken by children themselves, to explore children’s experiences of living with a chronic condition and the impact condition management may have on their everyday lives. In this paper we critically explore the issues arising from our use of PEI including children’s participation and engagement, balancing power and control, and keeping children safe. The main areas of focus for the paper are how PEI provided a means of shifting control; how setting photographic boundaries influenced our PEI study with children; and how we addressed risks associated with the method. Our experience shows that PEI is an engaging and valuable research method, providing a powerful medium for obtaining rich data with children. However, PEI is challenging and it requires researchers to conscientiously address ethical and practical aspects that extend beyond those inherent to standard (words-alone) interviews. [ABSTRACT FROM PUBLISHER]

cook c. (2012) Email interviewing: generating data with a vulnerable population. Journal of Advanced Nursing 68(6), 1330-1339. Abstract Aims. This paper describes online recruitment and the email interviewing data collection method with women diagnosed with a viral sexually transmitted infection. The paper highlights the advantages of the method to researchers and participants when conducting research where face-to-face participation may difficult. Background. Online recruitment and in-depth email interviewing have been used by only a small number of nurses internationally. The method enables inclusion of people who might otherwise be excluded from research, for reasons such as geographical distance, incompatible time frames, clinicians''gate-keeping' and participants' desire for anonymity for physical or emotional reasons. Methods. In-depth email interviews were conducted with 26 women in New Zealand, United States of America, Canada and England who had a diagnosis of either human papilloma virus or genital herpes simplex virus. Data were collected during 2007-2008 and analysed using a poststructuralist, feminist thematic analysis. Results. Participant retention was high. Women emphasized satisfaction with the process. Asynchronous interviews allowed for additional reflexivity in the researcher's responses and rich data generation. Conclusion. This method has the potential to enable nurses to include vulnerable and relatively inaccessible participants in 'sensitive' research. In-depth email interviews may generate rich data through a process participants deem to be of personal value. [ABSTRACT FROM AUTHOR]