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.
Aims To explore the day‐to‐day experience of young people living with neurofibromatosis type 1 in the UK, focusing on the role that appearance plays in this experience. Background neurofibromatosis type 1 is a genetic condition, which is highly variable and unpredictable. It can result in varying degrees of visible difference (disfigurement). Both the effect of NF1 on appearance and its uncertainty can prove particularly difficult for those affected. However, very little research to date has investigated the psychosocial impact of neurofibromatosis type 1 on young people or their experiences of managing it. Design Exploratory qualitative interview study. Methods Nine young people aged 14–24, with a confirmed diagnosis of neurofibromatosis type 1, took part in semi‐structured interviews between March–September 2011. Interview transcripts were thematically analysed. Findings Three key themes were identified from the data: (1) ‘Different things to different people’ reflecting the variability in the condition; (2) ‘Relationships and reactions’ relating to individuals’ social experience; and (3) ‘Understanding and misunderstanding’ reflecting participants’ experiences with organizations and social structures. Conclusions Findings suggest a need for further research to explore young people's adaptation and management of neurofibromatosis type 1. In particular, raising awareness and understanding of the condition among professionals and in the general public was an important issue for young people. In addition, access to trustworthy information about neurofibromatosis type 1 and practical advice to support adjustment to an altered appearance and managing stigma experiences are highlighted as areas to be considered further.
Neurofibromatosis type 1 (NF1) is a variable and unpredictable genetic condition that can lead to changes to an individual's appearance. Research has started to explore children's and young people's experiences of living with the condition; however, there is a lack of research with parents. This exploratory qualitative study set out to examine parents' experiences of caring for a young person with NF1. Seven parents took part in semi structured interviews which were subjected to a thematic analysis. Three key themes were identified which related to managing the uncertainty of the condition, the impact of an altered appearance, and others' awareness and understanding of NF1. Parents felt that understanding NF1 themselves in order to support their child was beneficial whilst a perceived lack of understanding by others was cited as a significant challenge. Parents require trustworthy information and also more widely call for greater understanding and awareness of the condition.
Loneliness among older people is perceived as a global public health concern, although assumptions that old age is a particularly lonely time for everyone are not accurate. While there is accumulating quantitative and qualitative evidence on the experience and impact of loneliness amongst older adults, there is little exploration of methodological issues that arise in engaging with older adults particularly through research-oriented conversations. The sensitivity and stigma often attached to loneliness means that interviewing research participants presents ethical challenges for researchers navigating complex emotional responses. This paper presents reflections from three research projects that used research interviews to explore accounts of loneliness experienced by older people. The everyday methodological decisions of research teams are often hidden from view, but through a critical examination of reflexive accounts of fieldwork, this paper makes visible the internal and external negotiations of researchers responding to ethical complexity. The paper explores the key decisions that researchers make during interviews about loneliness: how to introduce the topic; how to phrase questions about loneliness; when to ask the questions; how to deal with the stigma of loneliness and respond to ageism; and how to manage the participant–researcher relationship post-interview. The paper concludes with recommendations for appropriately navigating ethical complexity in loneliness research, thus contributing to an effective qualitative methodological approach to researching loneliness in later life.
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 14-24 years (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.
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