Silent witnesses: the experience of having a sibling with anorexia nervosa.

BACKGROUND: This study explored the experience of having a sibling with anorexia nervosa and the sibling perspectives on service provision. METHOD: Four focus groups were conducted with 14 siblings (8 female, 6 male, age 11-19 years) of adolescents with anorexia nervosa or related restrictive eating disorders. Group discussions were transcribed and analysed using thematic analysis. RESULTS: Four themes and eight sub-themes were generated. These illustrated siblings feel greatly affected by the way the family needs to change to support someone with anorexia nervosa. Feelings of ambivalence and acceptance were also evident. They described silencing their own emotions and needs so as not to trouble others, and distancing themselves from their families in order to cope. Some female (but no male) siblings identified an impact on their own perceptions of eating and body image. Siblings generally felt that services had not attended to their needs, and that they had not been appropriately included in treatment. CONCLUSIONS: Data from this study suggest the sibling experience needs to be more carefully considered and included in treatment. This may include a more explicit invitation to sessions and a more active discussion about their own needs and useful involvement in treatment sessions. Findings point to ways siblings may be better supported, such as peer support groups.

This study investigated the experience of having a sibling with anorexia nervosa, and the sibling perspectives on the treatment they get. Four focus groups were held with siblings (11­19 year-olds) of adolescents with anorexia nervosa. Group discussions were written down word-for-word and analysed using thematic analysis. Four themes and eight sub-themes were identified. These illustrated siblings feel very affected by the way the family needs to change to support someone with anorexia nervosa. Feelings of ambivalence and acceptance were also evident. Siblings said they silenced their own emotions and needs so as not to trouble others, and distanced themselves from their families in order to cope. Siblings generally felt that services had not attended to their needs, and that they had not been appropriately included in treatment. Findings from this study point to ways siblings may be better supported, such as peer support groups.

Training Genetic Counsellors to Deliver an Innovative Therapeutic Intervention: their Views and Experience of Facilitating Multi-Family Discussion Groups.

Innovations in clinical genetics have increased diagnosis, treatment and prognosis of inherited genetic conditions (IGCs). This has led to an increased number of families seeking genetic testing and / or genetic counselling and increased the clinical load for genetic counsellors (GCs). Keeping pace with biomedical discoveries, interventions are required to support families to understand, communicate and cope with their Inherited Genetic Condition. The Socio-Psychological Research in Genomics (SPRinG) collaborative have developed a new intervention, based on multi-family discussion groups (MFDGs), to support families affected by IGCs and train GCs in its delivery. A potential challenge to implementing the intervention was whether GCs were willing and able to undergo the training to deliver the MFDG. In analysing three multi-perspective interviews with GCs, this paper evaluates the training received. Findings suggests that MFDGs are a potential valuable resource in supporting families to communicate genetic risk information and can enhance family function and emotional well-being. Furthermore, we demonstrate that it is feasible to train GCs in the delivery of the intervention and that it has the potential to be integrated into clinical practice. Its longer term implementation into routine clinical practice however relies on changes in both organisation of clinical genetics services and genetic counsellors' professional development.

Developing an intervention to facilitate family communication about inherited genetic conditions, and training genetic counsellors in its delivery.

Many families experience difficulty in talking about an inherited genetic condition that affects one or more of them. There have now been a number of studies identifying the issues in detail, however few have developed interventions to assist families. The SPRinG collaborative have used the UK Medical Research Council's guidance on Developing and Evaluating Complex Interventions, to work with families and genetic counsellors (GCs) to co-design a psycho-educational intervention to facilitate family communication and promote better coping and adaptation to living with an inherited genetic condition for parents and their children (<18 years). The intervention is modelled on multi-family discussion groups (MFDGs) used in psychiatric settings. The MFDG was developed and tested over three phases. First focus groups with parents, young people, children and health professionals discussed whether MFDG was acceptable and proposed a suitable design. Using evidence and focus group data, the intervention and a training manual were developed and three GCs were trained in its delivery. Finally, a prototype MFDG was led by a family therapist and co-facilitated by the three GCs. Data analysis showed that families attending the focus groups and intervention thought MFDG highly beneficial, and the pilot sessions had a significant impact on their family' functioning. We also demonstrated that it is possible to train GCs to deliver the MFDG intervention. Further studies are now required to test the feasibility of undertaking a definitive randomised controlled trial to evaluate its effectiveness in improving family outcomes before implementing into genetic counselling practice.