Charlotte Clarke

Hearing the voices of children with chronic illness.

Hearing the voices of children with chronic illness This qualitative study has aimed to explore children’s, parents’ and health professionals’ experience of childhood chronic illness. Seven families and their professional carers participated in semistrucured interviews. The childrens interviews were augmented with a ‘drawing’ technique. A grounded theory approach facilitated data collection and analysis. This paper debates the perceived passivity of the voice of children in health care and research and illustrates data collection methods that seek to give children and other disadvantaged groups a voice. The children who participated in this study are described as competent interpreters of their world.

Decision-making in teams: issues arising from two UK evaluations

Interagency and interprofessional working has often been operationalised through the development of integrated, multiprofessional teams in the UK. However, there is considerable ambivalence reported about the success of such teams. This paper reports on two evaluations of different types of inter-agency/intra-agency, interdisciplinary/unidisciplinary teams. One study used a soft systems methodology to evaluate a health and social care team for people with enduring mental health needs and the other used a pluralistic framework to examine integrated nursing teams in primary care. In both studies, the team-working arrangements influenced the decisions made by the team members such that client care became increasingly responsive and proactive. These changes were made possible by two processes. First, information transaction was augmented and was instrumental in supporting effective client-related decision-making. Second, there was enhanced support for decision-making, especially in respect of problem solving. However, the increased autonomy of the team members had the potential to marginalise those outside the team from decision-making. It is suggested that working within a team can impact on the decisions made by team members, which exceeds a collection of individual decisions. The strengths of complex multiprofessional teams for service users may be realised if the processes of decision-making are respected.Interagency and interprofessional working has often been operationalised through the development of integrated, multiprofessional teams in the UK. However, there is considerable ambivalence reported about the success of such teams. This paper reports on two evaluations of different types of inter-agency/intra-agency, interdisciplinary/unidisciplinary teams. One study used a soft systems methodology to evaluate a health and social care team for people with enduring mental health needs and the other used a pluralistic framework to examine integrated nursing teams in primary care. In both studies, the team-working arrangements influenced the decisions made by the team members such that client care became increasingly responsive and proactive. These changes were made possible by two processes. First, information transaction was augmented and was instrumental in supporting effective client-related decision-making. Second, there was enhanced support for decision-making, especially in respect of problem solving. However, the increased autonomy of the team members had the potential to marginalise those outside the team from decision-making. It is suggested that working within a team can impact on the decisions made by team members, which exceeds a collection of individual decisions. The strengths of complex multiprofessional teams for service users may be realised if the processes of decision-making are respected.

The effect of a clinical nurse specialist in gynaecological oncology on quality of life and sexuality

Gynaecological malignancy has an immense impact on the well-being of women. For many women, however, treatment such as surgery is curative and healthcare intervention focuses on the physiological status of the women. The psychological, social and sexual consequences of the malignancy and its treatment have received little attention in research or in practice. The present study used a mixed quantitative and qualitative design to analyse a specialist nurse intervention (including psychosexual intervention), and to explain the impact of the illness on womens lives. The qualitative arm of the study collected interview data from 20 women and six partners. The randomized controlled trial sample consisted of 36 women, with data collected using a quality of life measure (the EORTC QLQ-C30) and the Lasry Sexual Functioning scale. This paper focuses on the randomized controlled trial data, which identified that sexual functioning and quality of life were improved in the active group who received specialist psychosexual counselling. However, the validity of the sexual functioning scale is challenged by the qualitative results of the study, which emphasize the social meaning of sexuality.• Gynaecological malignancy has an immense impact on the well-being of women. For many women, however, treatment such as surgery is curative and healthcare intervention focuses on the physiological status of the women. • The psychological, social and sexual consequences of the malignancy and its treatment have received little attention in research or in practice. • The present study used a mixed quantitative and qualitative design to analyse a specialist nurse intervention (including psychosexual intervention), and to explain the impact of the illness on womens lives. • The qualitative arm of the study collected interview data from 20 women and six partners. The randomized controlled trial sample consisted of 36 women, with data collected using a quality of life measure (the EORTC QLQ-C30) and the Lasry Sexual Functioning scale. • This paper focuses on the randomized controlled trial data, which identified that sexual functioning and quality of life were improved in the active group who received specialist psychosexual counselling. • However, the validity of the sexual functioning scale is challenged by the qualitative results of the study, which emphasize the social meaning of sexuality.

Risk: Constructing care and care environments in dementia

Inherent in the notion of risk is the probability of an adverse event. However, recognising an event as adverse is subject to differing interpretations and is located in the knowledge base used. For dementia care, this has several implications for practice because of the differential knowledge of practitioners, family carers and people with dementia. Data from a study about the meanings of caring for a person with dementia are used to analyse the impact of knowledge on the construction of risk, the consequent nature of care and the location of that care.

Seeing need and developing care: exploring knowledge for and from practice

The use and creation of knowledge by practitioners is complex. There is a contemporary emphasis on the implementation of knowledge, or evidence, derived from outside the immediate practice environment. However, there is also an appreciation of the context-specific nature of practitioner knowledge that they use to inform patient care, and that is derived from their intimate contact with patients. This paper described one study that sought to analyse the impact of developments in practice on the wider professional and organisational community. Three case study sites were identified through a multidimensional sampling matrix, and interviews conducted with 41 practitioners of various organisational positions and professions. The primacy of context-specific, or proximal knowledge was highlighted, together with a manipulation of evidence and policy to fit understandings of local patient need.

Risk perception among older South Asian people in the UK with type 2 diabetes.

Aim.  To report on a study which developed a knowledge of the experiences of South Asian people with diabetes in the UK in relation to socio-cultural and dietary practices, religion and ageing influences on the perception and understanding of risks. Background.  South Asian people have enhanced vulnerability to poor health as a result of diabetes. Risk perception and management is culturally mediated, yet imperative to the behaviour adjustments required for diabetes management. Method.  A grounded theory study with data collected by focus group with ethnic health development workers and individual interviews with 20 older people with diabetes. Where necessary, interpreters were involved in data collection. Findings.  A number of issues influence the perception of risk among South Asian older people with diabetes: beliefs about its cause, perceived severity and its visibility, food and its social function, religion and beliefs about external control over their life span and diabetes management. People weighed up the risks in making decisions about issues such as dietary management and the emphasis placed on diabetes as a pathology. Conclusion.  Good risk communication will maintain the current trend of improving patients choice and self-management in health care, and there is a need for this to be sensitive to the particular issues faced by South Asians with diabetes in the UK.

Family care-giving for people with dementia: some implications for policy and professional practice

Family care-giving for people with dementia: some implications for policy and professional practice¶The objective of this paper is to describe one study undertaken in the north of England which sought an understanding of family care-giving for people with dementia. Data were collected by interview and diary with 14 family carers, by questionnaire with 60 professional carers, and by interview and diary from nine case studies. Family carers were found to value their continuing relationship with the person with dementia. This emphasis on their relationship together influenced the contact which they had with professional carers. The implications of this research for policy and professional practice are explored through illumination of the tensions in professional responses to family carers.

Services for younger people with dementia: problems with differentiating needs on the basis of age.

There is a growing movement to develop specific services for younger people with dementia. This article reports on an evaluation of one such service that was developed in response to a locally identified deficit in ‘age-sensitive’ care. The service was evaluated very positively by service users, and the staff on the project were keen to detail the differences that they had observed between the needs of their clients and older people with dementia. The clients’ responses, however, did not necessarily highlight age-specific needs; the comments were more about how the service was sensitive to individual needs. This suggests that the level of responsiveness offered by the team is much valued, but could also be a foundation for all services for all people with dementia, regardless of age. The study suggests, therefore, that the work of the team offers a model which could be applied across all client groups.

Risky and resilient life with dementia: review of and reflections on the literature

In this article, we report on our interpretation of past and current literature on negotiating risk and resilience in the everyday lives of people living with dementia. We undertook the literature review on which this article is based as part of an ongoing qualitative study designed to explore issues of risk and resilience from the point of view of people living with dementia in urban and rural communities. We carried out a search of international, peer-reviewed publications in 2012 with an emphasis on UK policy and practice. We also accessed UK Government documents and reports for background detail. We found that there is a personal, collective, practice and policy-based will to secure robust and positive responses to risk and to work with individual and collective notions of resilience. However, there is a competing practice narrative of vulnerability and protection, and a concern with litigation that undermines positive responses to risk. There is some recognition that for community dementia services to be responsive and proactive to the needs and wishes of their users, risk and resilience need to be considered from within complex and diverse, local perspectives and lifelong knowledge. We would add to this by emphasising that an understanding of local context is also needed to fully appreciate complex and nuanced positioning of the person living with dementia. Resources may or may not be in place, but how and why they are used (or not used), and how the person with dementia may be influenced (or not) by others and by localised contexts, may have far-reaching implications for policy and practice.

Work based, lifelong learning through professional portfolios: Challenge or reward?

As the world of work changes, UK pharmacists are increasingly required to recognise and articulate lifelong learning. College of Pharmacy Practice (CPP) portfolios were made available to 25 pharmacists in a single Workforce Development Confederation area. The evaluation reported here formed one strand of a larger study exploring CPD activity in the NHS. This strand aimed to describe and consider the ways in which pharmacists used the CPP portfolio as a vehicle to articulate their acquisition and use of practice based knowledge. Data were obtained through semi-structured interviews with nine pharmacists before and after using the portfolios (n = 18 interviews) and were analysed using “framework technique”. Key emergent themes were “socialised learning” and “learning amplification”, in particular the findings emphasised the importance of recognising: . the advantages/disadvantages of work based (socialised) learning approaches; and . the environment in which learning takes place and ensuring that learning can be “amplified” for the individual and the organisation.