Involving interpreters in research studies.

It is important to include non English speakers in health services research to ensure not only the generalisability of findings but also to address health inequalities and promote social justice. One approach is to use interpreters but there is little guidance for working with an interpreter in interviews. Involving an interpreter presents challenges in the planning and conduct of research interviews which can be minimised by an awareness of various theoretical and practical implications and of potential pitfalls. Drawing both on our experiences of involving interpreters in research and on the literature, we raise some issues that researchers need to consider.

The role of support groups in facilitating families in coping with a genetic condition and in discussion of genetic risk information.

BACKGROUND: Giving children and young people information about genetic conditions and associated risk has been shown to be important to their identity, coping and decision making. Parents, however, find talking to their children difficult, and support from health professionals is often not available to them. OBJECTIVE: To explore the role of support groups in family coping, and in assisting parents' communication about risk with children in families affected by an inherited genetic condition. METHODS: Semi-structured interviews analysed using grounded theory and informed by models focusing on aspects of family communication. PARTICIPANTS: Affected and unaffected children and their parents, from families affected by one of six genetic conditions, that represent different patterns of inheritance, and variations in age of onset, life expectancy and impact on families. RESULTS: Parents often sought support they did not receive elsewhere from support groups. They identified benefits, but also potential disadvantages to this involvement. These related to the specific condition and also whether groups were run solely by parents or had professional input. Support groups rarely helped directly with family communication, but attendance often stimulated family discussion, and they provided information that improved parents' confidence in discussing the condition. CONCLUSIONS: Support groups should be seen only as additional to the support offered by health and social care professionals. An increased understanding of the role of support groups in assisting families with genetic conditions has been highlighted, but further work is needed to explore more fully how this may be made more sustainable and far-reaching.

An evaluation of the impact of the Gold Standards Framework on collaboration in end-of-life care in nursing homes. A qualitative and quantitative evaluation.

BACKGROUND: In the United Kingdom approaching 20% of people aged 85 years and over live in care homes and most will die there. Improving end-of-life care is a government health priority and homes may work with primary care staff and specialist palliative practitioners to provide comprehensive end-of-life care. Consequently effective collaboration between care home and health service practitioners is vital to ensure high quality end-of-life care. OBJECTIVES: To evaluate the impact of a training programme to improve end-of-life care in nursing homes, on collaboration between nursing home staff and other health practitioners. DESIGN: Evaluation using survey methods and qualitative case studies. PARTICIPANTS AND SETTING: All 95 nursing homes in the first national 'Gold Standards Framework in Care Homes' programme in England were invited to participate in the evaluation. METHODS: A survey of homes' characteristics, the approaches to end-of-life care, and liaison with other services, was completed pre and post programme implementation. Case studies were conducted in a sub-sample of 10 homes to provide important context and depth to the evaluation. RESULTS: Pre and post surveys were returned by 49 (52%) homes. Improved collaborations as a result of the programme were anticipated by 31% of managers. Challenges to collaboration included working with large numbers of general practitioners, out-of-hours services and access to specialist practitioners. Improved collaborations between home staff and health service practitioners were identified by 33% of managers as one of the main programme outcomes. Staff reported increased knowledge of end-of-life care, and enhanced confidence, which in turn resulted in improved communication and collaboration. Post-programme, staff felt more confident initiating contact and discussing residents' end-of-life care with general practitioners and those working in specialist palliative care services. CONCLUSIONS: The Gold Standards Framework in Care Homes programme can contribute towards end-of-life care by helping to improve the quality and quantity of communication and collaboration between nursing home staff and primary care and specialist practitioners. Further research is needed to determine why this was not consistent across all homes.

Parents' communication with siblings of children affected by an inherited genetic condition.

The objective of this study was to explore parents' communication about risk with siblings of children affected by an inherited genetic condition, and to ascertain what level of support, if any, is required from health professionals. Semi-structured interviews were conducted with affected and unaffected children and their parents. Families were affected by one of six genetic conditions representing different patterns of inheritance and variations in age of onset, life expectancy and impact on families. Interviews were analysed using constructivist grounded theory and informed by models which focused on three different aspects of family communication. Interviews with 33 families showed that siblings' information and support needs go largely unrecognized by health professionals and sometimes by parents. Some siblings were actively informed about the genetic condition by parents, others were left to find out and assimilate information by themselves. Siblings were given information about the current symptoms and management of the genetic condition but were less likely to know about its hereditary nature and their own potential risk. When siblings were fully informed about the condition and included in family discussion, they had a better understanding of their role within their family, and family relationships were reported to be more harmonious. The information and support needs of siblings can be overlooked. Parents with the responsibility for caring for a child affected by a genetic condition may require support from health professionals to understand and respond to their unaffected children's need for more information about the genetic condition and its implications for the children's own future health and reproductive decision-making.

Family communication about genetic risk information: particular issues for Duchenne muscular dystrophy.

Open family communication about genetic conditions and associated risk is important to children's identity, coping and decision making. Parents however find talking to their children difficult and because of associated care needs and emotional reactions it can be particularly stressful in families affected by Duchenne muscular dystrophy (DMD). This article reports on the findings of a group of families affected by DMD who formed part of a larger study where adult and child members of 33 families affected by one of six genetic conditions were interviewed. Parents thought they should talk to children about a genetic condition in their family and children wanted information and open discussion. In families affected by DMD clear gender differences were identified between mothers and fathers in coping and in their roles in relation to the condition. There was a particularly close bond between mothers and affected sons. For most conditions, mothers were central to giving children information but the identified issues made this problematic in families with DMD. This resulted in affected children receiving little information about their condition at all and female siblings being unlikely to receive information about their potential carrier status until they were about 16-year old. Insight into family communication within families affected by DMD assists healthcare professionals in recognizing and meeting the particular support needs of this group of families.