Young people's experiences of neurofibromatosis type 1

Neurofibromatosis type 1 (NF1) is a genetic condition which can result in varying degrees of visible difference (disfigurement). There is currently very little research into the psychosocial impact of NF1, particularly during adolescence, a time when health behaviours are consolidated and appearance concerns become more salient. While clinical reviews, research and case studies have suggested that appearance is likely to play an important role in the lives of people with NF1, how young people manage appearance concerns and the possibility of a changing appearance on a day-to-day basis has not specifically been researched. The impact of appearance changes (and potential changes) associated with the condition are therefore an important area to understand further. In order to explore the role of appearance within young people’s experiences of NF1 this thesis takes an exploratory qualitatively driven mixed methods approach. In-depth interviews were carried out with 19 people; nine young people aged 14-24 with a diagnosis of NF1; seven parents of young people with NF1 and three health professionals who work with people with NF1. Interviews were thematically analysed and subsequent themes informed the development of mixed methods surveys of young people with NF1 (n=73), parents (n=55) and health professionals (n=53). Both interview and questionnaire data highlighted the variety in young people’s experiences of NF1. While appearance was important to young people, this was primarily in terms of general appearance evaluations and managing the uncertainty of possible future changes to their appearance rather than how noticeable they felt the condition was. While health professionals agreed with this assessment, an important difference between participant groups was that parents felt that the noticeability of symptoms impacted on their child’s experience. All participant groups underlined the importance of managing social interactions and the reactions of other people. Participants also highlighted a need for greater awareness and understanding of NF1, and access to trustworthy information and advice about their condition. Suggested applications from findings discussed in this thesis include providing young people with age appropriate information regarding their condition, in different formats including access to health professions who are specialists in genetics or NF1. Young people may also benefit from targeted help and support related to social skills, specifically including support in talking about NF1 and answering questions about their condition. It is suggested that future research should explore how young people with NF1 and their parents manage uncertainty and noticeability. This thesis contributes to the literature by providing data from groups who are under researched about an aspect of their experience that has not been explored. By employing a range of methods and including different participant groups an in-depth, detailed understanding of the role that appearance plays within young people’s experiences of NF1 is provided

Statement: Industrial development at Whyalla

A randomly selected sample of 165 children from Romania (of whom 144 had been reared in institutions) who were adopted by UK families, with placement before the age of 42 months, was studied at 4, 6, and 11 years of age. Comparisons were made with a sample of 52 non-institutionalized UK children adopted before the age of 6 months, who were studied in the same way. The paper briefly summarizes circumstances at the time of adoption and then reports findings at age 11, focusing on changes between 6 and 11. Marked catch-up in psychological functioning was evident following adoption, but significant problems continued in a substantial minority of the children placed after the age of 6 months. The theoretical implications of the findings are considered, and the policy implications are noted

The Role of Appearance in Adolescents’ Experiences of Neurofibromatosis Type 1: A Survey of Young People and Parents

© 2016, National Society of Genetic Counselors, Inc. Neurofibromatosis type 1 (NF1) is a genetic condition which can result in varying degrees of visible difference (disfigurement). Adolescence is a time when appearance concerns become more salient for many young people and is acknowledged as a particularly challenging time for individuals with NF1. There is currently little research into the psychosocial impact of the appearance changes associated with NF1 during this stage of life. In order to address this, surveys of young people with NF1 aged 14–24years (n=73), and parents of young people with NF1 (n=55) were developed following interview studies with these groups. The surveys included the Perceived Stigma Questionnaire, Social Comfort Questionnaire, Body Esteem Scale (appearance subscale) and the Subjective Happiness Scale. Young people and parents identified appearance as central to young peoples’ experience of NF1, however no significant difference was found on measures of body esteem, happiness, stigma or social comfort between those young people who reported their NF1 was noticeable to others and those who reported it was not. Findings from the parent survey indicated that their reports of greater perceived noticeability did relate to greater perceived stigma and lower levels of social comfort. Findings highlight the importance of attending to young people’s concerns around appearance in general and managing the possibility of future appearance changes, rather than the current noticeability of NF1

Community-based research and approaches to loneliness prevention

Purpose The purpose of this paper is to report on research with older people that explored experiences of loneliness in order to consider community level approaches to prevent and reduce feelings of loneliness. Design/methodology/approach This research was co-produced with a community research group and involved a series of in-depth interviews (n=14) with older people. Interviews were thematically analysed. Findings Analysis revealed three key themes: connecting and disconnecting, points of vulnerability and older identity. Social connections were important to participants and many felt disconnected at times. Findings underline the importance of understanding the social perceptions of older people and how individuals themselves conceptualise older age. Research limitations/implications Further research is needed to explore the value of social media in reducing feelings of loneliness generally. With regards to social implication the author suggests that older people need to be more visible and loneliness needs to be normalised and discussed without stigmatisation. In practical terms as people get older, and particularly as they retire, people need opportunities to re/engage with their geographically local community. The author suggests that preventing loneliness may mean finding supportive structures to enable this such as local community-based retirement classes. It is important to note that this research concentrated on one particular community in Bristol and needs to be replicated in order to further explore findings. Originality/value This research adopted a co-produced approach and involved community professionals, academics and local older people working together to explore the issue of loneliness. The author believes this has led to a greater breadth and depth of insight. </jats:sec