scholarly journals Experiences of adolescents living with Silver-Russell syndrome

2021 ◽  
pp. archdischild-2020-321376
Author(s):  
Lisa Marie Ballard ◽  
Elizabeth Jenkinson ◽  
Christopher D Byrne ◽  
Jenny C Child ◽  
Hazel Inskip ◽  
...  
Keyword(s):  
Lived Experience ◽  
Qualitative Interviews ◽  
Adult Life ◽  
Growth Failure ◽  
Structured Interviews ◽  
Pain Disability ◽  
Psychosocial Challenges ◽  
Anticipated Stigma ◽  
The Uk ◽  
Silver Russell Syndrome

ObjectiveThe psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by growth failure and short stature in adulthood, has been explored in adults; however, there are no accounts of contemporary lived experience in adolescents. Such data could inform current healthcare guidance and transition to adult services. We aimed to explore the lived experience of adolescents with SRS.Design/setting/patientsIn-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of eight adolescents aged 13–18 (five girls) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences using thematic analysis; codes were then grouped to form overarching themes.ResultsWe identified four themes from the interview data: (1) the psychosocial challenges of feeling and looking different; (2) pain, disability and fatigue; (3) anticipated stigma; and (4) building resilience and acceptance. Despite adolescents accepting SRS in their lives, they described ongoing psychosocial challenges and anticipated greater problems to come, such as stigma from prospective employers.ConclusionsAdolescents with SRS may experience psychosocial difficulties from as young as 10 years old related to feeling and looking different; pain, disability and fatigue; anticipated stigma; and future challenges around employment. We discuss these findings in relation to recommendations for the care of adolescents with SRS to prepare them for adult life.

“There is still a perception that homelessness is a housing problem”: devolution, homelessness and health in the UK

2016 ◽  
Vol 19 (2) ◽  
pp. 33-44 ◽  
Author(s):  
Martin Whiteford ◽  
Glenn Simpson
Keyword(s):  
Qualitative Interviews ◽  
Homeless People ◽  
Small Sample ◽  
Issue Salience ◽  
Structured Interviews ◽  
Healthcare Provision ◽  
Policy And Practice ◽  
Content Type ◽  
The Uk ◽  
Comparative Policy

Purpose The purpose of this paper is to provide an exploratory account of the links between devolution, homelessness and health in the UK. Specifically, it focusses on the policy context and governance structures that shape the systems of healthcare for homeless people in London, Scotland, Wales and Northern Ireland. Design/methodology/approach Empirically the paper draws on semi-structured interviews with a small sample of policy and practice actors from the devolved territories. Qualitative interviews were supplemented by a comparative policy analysis of the homelessness and health agenda within the devolved regions. Theoretically, it takes inspiration from Chaney’s concept of the “issue salience of homelessness” and explores the comparative character of healthcare as pertains to homeless people across the devolved territories. Findings The paper provides clear evidence of areas of divergence and convergence in policy and practice between the devolved regions. These features are shown to be strongly mediated by the interplay of two factors: first, the scope and scale of national and local homelessness prevention strategies; and second, intra-national variation in public health responses to homelessness. Originality/value The paper offers considerable insight from a comparative policy perspective into the nature of healthcare provision for homeless people in the devolved regions.

scholarly journals Understanding the lived experience of British non-offending paedophiles

2020 ◽  
Vol 22 (2) ◽  
pp. 71-81
Author(s):  
Harriet Dymond ◽  
Simon Duff
Keyword(s):  
Sexual Abuse ◽  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Sexual Attraction ◽  
Well Being ◽  
Future Research ◽  
Structured Interviews ◽  
Content Type ◽  
Management Techniques ◽  
The Uk

Purpose Research into paedophilia mainly uses offender samples; thus, little is understood about non-offending paedophiles. The limited body of research has been conducted in North America or Europe whose health and legal systems differ from those in the UK. Using semi-structured interviews, the purpose of this study is to explore the experience of three non-offending British paedophilic males. Design/methodology/approach The interview discussed their paedophilia, refraining from offending and perspectives on treatment initiatives. Data were analysed using interpretative phenomenological analysis. Findings Three superordinate themes emerged: “paedophilia as more than a sexuality,” “acceptance leads to management” and “barriers to support.” These encapsulated how paedophilia was understood, how accepting one’s sexual attraction is tantamount to well-being and the various obstacles to providing support were discussed. Research limitations/implications Acknowledging the sampling considerations (size and recruitment), the results implicate research into paedophilia. The onset of paedophilia was chronologically associated with typical sexual attraction, and not the result of sexual abuse as some theories suggest. Furthermore, the tenets of attraction to children extending beyond sexual desire were highlighted. Practically, the results influence future research into the area and highlight the dearth in our understanding of diverse behavioural management techniques (i.e. computerised images of children or human-like dolls). Originality/value This paper presents novel insight into the aspects of paedophilia, excluding offensive behaviour and highlights the need for affordable, UK-based services targeted towards people with a paedophilic attraction to manage child sexual abuse preventatively and not reactively.

Black men, religiosity and desistance: exploring Islam, desistance and identity

2018 ◽  
Vol 17 (1) ◽  
pp. 47-67 ◽  
Author(s):  
Shona Robinson-Edwards ◽  
Craig Pinkney
Keyword(s):  
Lived Experience ◽  
Black Men ◽  
Social Science Research ◽  
Science Research ◽  
Father Absence ◽  
Structured Interviews ◽  
Efficient Manner ◽  
Content Type ◽  
The Uk

Purpose The purpose of this paper is to explore the experiences of Ibrahim, an ex-offender who has embraced Islam. Ibrahim professes Islam to be the influential element to his desistance process. This study explores Ibrahim’s journey, emphasising and reflecting upon youth; criminality and religiosity. Much of the current research relating to Black men and offending is limited to masculinity, father absence, gangs and criminality. The role of religiosity in the lives of offenders and/or ex-offenders is often overlooked. The authors suggest that identity, religiosity and desistance can raise a host of complexities while highlighting the unique challenges and benefits experienced by Ibrahim, following the practice of religion. Design/methodology/approach This paper took a qualitative, ethnographic approach, in the form of analysing and exploring Ibrahim’s personal lived experience. The analysis of semi-structured interviews, and reflective diaries, utilising grounded theory allowed the formation of the following three core themes: desistance, religion and identity. Findings The findings within this paper identify an interlink between desistance, religion and identity. The role of religiosity is becoming increasingly more important in academic social science research. This paper highlights the complexities of all three above intersections. Research limitations/implications This paper explores the complexities of religiosity in the desistance process of Ibrahim. Research in relation to former gang members in the UK and the role of religiosity in their lives is fairly under-researched. This paper seeks to build on existing research surrounding gang, further exploring religiosity from a UK context. Practical implications Time spent with Ibrahim had to be tightly scheduled, due to the work commitments of both Ibrahim and the researcher. Therefore, planning had to be done ahead in an efficient manner. Social implications Researching the way individuals experience the world is a “growing phenomenon”. This paper aimed to explore the lived experience of religiosity from the perspective of Ibrahim. However, it was important to not stereotype and label all Black males who have embraced Islam and desisted from crime. Therefore, this paper’s intention is not to stereotype Black men, but to raise awareness and encourage further discussion surrounding the role of religiosity in the lives of ex-offenders’. Originality/value To the authors’ knowledge, studies specifically focusing on the role of Islam in the life of an ex-offender are few and far between. Therefore, findings from this study are important to develop further understanding surrounding religiosity, offending and desistance. This study explores the lived experiences of Ibrahim, an former gang member and ex-offender who professes Islam to be a fundamental source to his desistance process.

scholarly journals “Why would you want to stand?” an account of the lived experience of employees taking part in a workplace sit-stand desk intervention

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Jennifer Hall ◽  
Tess Kay ◽  
Alison McConnell ◽  
Louise Mansfield
Keyword(s):  
Lived Experience ◽  
Sedentary Behaviour ◽  
Interpersonal Relationships ◽  
Design Theory ◽  
Cultural Theory ◽  
Qualitative Interviews ◽  
Employee Health ◽  
Individual Level ◽  
Pilot Rct ◽  
The Uk

Abstract Background Sit-stand desk interventions have the potential to reduce workplace sedentary behaviour and improve employee health. However, the extent of sit-stand desk use varies between employees and in different organisational contexts. Framed by organisational cultural theory and product design theory, this study examined employees’ lived experience of taking part in a workplace sit-stand desk intervention, to understand the processes influencing feasibility and acceptability. Methods Participant observations and qualitative interviews were conducted with 15 employees from two office-based workplaces in the UK, as part of a process evaluation that ran alongside a pilot RCT of a workplace sit-stand desk intervention. Observational field notes and transcripts were analysed using thematic analysis. Results Three themes related to the experience of using a sit-stand desk at work were generated: employees’ relationship with their sit-stand desk; aspirations and outcomes related to employee health and productivity; and cultural norms and interpersonal relationships. The perceived usability of the desk varied depending on how employees interacted with the desk within their personal and organisational context. Employees reported that the perceived influence of the desk on their productivity levels shaped use of the desk; those who perceived that standing increased energy and alertness tended to stand more often. Sit-stand desks were voiced as being more acceptable than intervention strategies that involve leaving the desk, as productivity was conflated with being at the desk. Conclusions The findings indicate a range of organisational, social-cultural and individual-level factors that shape the feasibility and acceptability of sit-stand desk use, and suggest strategies for improving employees’ experiences of using a sit-stand desk at work, which might positively influence sedentary behaviour reduction and health. Trial registration Clinicaltrials.gov identifier NCT02172599, 22nd June 2014 (prospectively registered).

Taught resilience programmes: a case study from the perspective of employees of a large pharmaceutical company based in the UK

2020 ◽  
Vol 2 (2) ◽  
pp. 111-129
Author(s):  
Frances Costello
Keyword(s):  
Lived Experience ◽  
Interpretative Phenomenological Analysis ◽  
Structured Interviews ◽  
Content Type ◽  
Individual Resilience ◽  
Personal Resilience ◽  
The Uk ◽  
Almost All ◽  
The Impact

PurposeResearch was undertaken to understand whether taught resilience programmes which highlight the protective factors of resilience would impact individual resilience outcomes. The research focussed on specific resilience dimensions, change agility, physical, emotional and mental resilience, purpose in life and recovery; in an attempt to bridge the gap in understanding whether it is possible through taught programmes to improve resilience through the creation of new habits.Design/methodology/approachThe research was conducted using interpretative phenomenological analysis methods and used semi-structured interviews with 12 participants to understand participants lived experience of a one-day personal resilience programme, conducted within a private global manufacturing organisation.FindingsThe research found that all 12 participants interviewed 12–18 months post-programme made sustainable habits changes increasing personal resilience levels. Participants built new habits into their everyday lives, in the physical dimension exercising more regularly, taking breaks, changes in nutrition and creating better sleep patterns. Through increased understanding of emotional intelligence participants were able to react more favourably to adverse situations and through mental increased resilience focus achieve work and home priorities. In understanding the change journey participants found that they were able to move more quickly through the change cycle. Almost all participants found understanding their life purpose difficult and were not able to give a conclusive answer to what this might be, they found that attending the programme helped reflection in this dimension.Originality/valueThe paper includes an overview of previous resilience research but differs in its examination of the impact of a specific taught resilience programme in a large private sector organisation using IPA methodology.

scholarly journals Lived experience of Silver-Russell syndrome: implications for management during childhood and into adulthood

2018 ◽  
Vol 104 (1) ◽  
pp. 76-82 ◽  
Author(s):  
Lisa Marie Ballard ◽  
Elizabeth Jenkinson ◽  
Christopher D Byrne ◽  
Jenny C Child ◽  
Justin Huw Davies ◽  
...  
Keyword(s):  
Short Stature ◽  
Lived Experience ◽  
Well Being ◽  
Psychosocial Impact ◽  
Multidisciplinary Teams ◽  
Childhood And Adolescence ◽  
Limited Information ◽  
Structured Interviews ◽  
Healthcare Provision ◽  
Silver Russell Syndrome

ObjectiveThere is limited information on the psychosocial impact of growing up with Silver-Russell syndrome (SRS), characterised by slow growth in utero leading to short stature in adulthood. Such information could aid families in making difficult treatment decisions and guide management strategies for health professionals. We aimed to explore the lived experience of people with SRS across the lifespan.Design/setting/patientsIn-depth, semi-structured interviews were conducted between January 2015 and October 2016 with a sample of 15 adults (six women) with genetically confirmed SRS from the UK. Qualitative interviews were transcribed and coded to identify similarities and differences: codes were then grouped to form overarching themes.ResultsFour themes were identified from participant accounts: (1) appearance-related concerns extending beyond height; (2) strategies to deal with real and perceived threats; (3) women’s experiences of pain, disability and feeling older than their years; and (4) feeling overlooked in romantic relationships. These themes show that other factors, beyond short stature, affect patient well-being and indicate a mismatch between patient need and healthcare provision.ConclusionsChallenges in SRS during childhood and adolescence were central to the psychosocial impact of SRS, and were not limited to height. These challenges, as well as symptoms such as pain and fatigue for women, have not previously been documented. To help individuals with SRS develop strategies to manage psychosocial issues, we recommend clinicians incorporate psychological services as an integral part of multidisciplinary teams managing individuals with SRS during childhood, adolescence and adulthood.

scholarly journals The cultural non-participant: critical logics and discursive subject identities

2019 ◽  
Vol 9 (1) ◽  
pp. 50-64
Author(s):  
David Stevenson
Keyword(s):  
Lived Experience ◽  
Cultural Policy ◽  
Qualitative Interviews ◽  
Primary Data ◽  
Research Approach ◽  
Data Generation ◽  
Cultural Participation ◽  
Content Type ◽  
Policy Problem ◽  
The Uk

Purpose The existence of so-called non-participants is a cultural policy problem in the UK and beyond. Yet, the very notion of a cultural non-participant seems nonsensical against the palpable evidence of lived experience. The purpose of this paper is to understand “who” a cultural non-participant is by first comprehending “what” the cultural non-participant is and why it exists. Design/methodology/approach Drawing on primary data generated in the form of 40 in-depth qualitative interviews, this paper employs a discursive methodology to explore the critical logics (Howarth, 2010) that underlie the problem representation (Bacchi, 2009) of cultural non-participation and in particular the discursive subject identity of the cultural non-participant. Findings Beginning with a discussion about how cultural non-participants are represented as socially deprived and hard to reach, the paper moves on to highlight how they are also presumed to lack knowledge and understanding about what they are rejecting. Their supposed flawed subjectivity is then contrasted with the desirable model of agency claimed by the cultural professionals who seek to change the cultural participation patterns of others. The paper concludes with a consideration of how the existence of the cultural non-participant subject identity limits the extent to which those labelled as such can meaningfully contribute to the field of cultural policy and obscures the extent to which such individuals are culturally disenfranchised. Research limitations/implications Because of the chosen research approach and the geographical limitations to the data generation, the research makes no claim to generalisability. Therefore, researchers are encouraged to test the discursive logics identified at alternative discursive sites. Practical implications This paper proposes a change in the language used by cultural professionals accompanied by changes in practice that abandoning the identity of the cultural non-participant would demand. Originality/value This paper challenges a taken for granted assumption that cultural non-participants exist “in the real”.

scholarly journals Payday lending in the UK: the regul(aris)ation of a necessary evil?

2016 ◽  
Vol 45 (3) ◽  
pp. 527-543 ◽  
Author(s):  
KAREN ROWLINGSON ◽  
LINDSEY APPLEYARD ◽  
JODI GARDNER
Keyword(s):  
Lived Experience ◽  
Qualitative Interviews ◽  
Predatory Lending ◽  
Negative Consequences ◽  
Payday Lending ◽  
Role Of The State ◽  
The Media ◽  
The Uk ◽  
Necessary Evil ◽  
Income Insecurity

AbstractConcern about the increasing use of payday lending led the UK's Financial Conduct Authority to introduce landmark reforms in 2014/15. While these reforms have generally been welcomed as a way of curbing ‘extortionate’ and ‘predatory’ lending, this paper presents a more nuanced picture based on a theoretically-informed analysis of the growth and nature of payday lending combined with original and rigorous qualitative interviews with customers. We argue that payday lending has grown as a result of three major and inter-related trends: growing income insecurity for people both in and out of work; cuts in state welfare provision; and increasing financialisation. Recent reforms of payday lending do nothing to tackle these root causes. Our research also makes a major contribution to debates about the ‘everyday life’ of financialisation by focusing on the ‘lived experience’ of borrowers. We show that, contrary to the rather simplistic picture presented by the media and many campaigners, various aspects of payday lending are actually welcomed by customers, given the situations they are in. Tighter regulation may therefore have negative consequences for some. More generally, we argue that the regul(aris)ation of payday lending reinforces the shift in the role of the state from provider/redistributor to regulator/enabler.

scholarly journals Long Covid and the role of physical activity: a qualitative study

2020 ◽  
Author(s):  
Helen Humphreys ◽  
Laura Kilby ◽  
Nik Kudiersky ◽  
Robert Copeland
Keyword(s):  
Physical Activity ◽  
Qualitative Study ◽  
Lived Experience ◽  
Research Interest ◽  
List Type ◽  
Structured Interviews ◽  
Telephone Interviews ◽  
On Line ◽  
The Uk

ABSTRACTObjectivesTo explore the lived experience of Long Covid with particular focus on the role of physical activityDesignQualitative study using semi-structured interviewsParticipants18 people living with Long Covid (9 male, 9 female; aged between 18-74; 10 White British, 3 White Other, 3 Asian, 1 Black, 1 mixed ethnicity) recruited via a UK-based research interest database for people with Long CovidSettingTelephone interviews with 17 participants living in the UK and 1 participant living in the USResultsFour themes were generated. Theme one highlights the physical and social isolation experienced by people with Long Covid, compounded by a lack of support and advice from medical professionals. Theme two describes how participants sought information and validation through online sources and communities. Theme three captures the challenges associated with managing physical and cognitive effects of Long Covid including fatigue and ‘brain fog’ whilst trying to resume and maintain activities of daily living and other forms of exercise. Theme four illustrates the battle with self-concept to accept reduced function (even temporarily) and the fear of permanent reduction in physical and cognitive ability.ConclusionsThis study provides insight into the challenges of managing physical activity alongside the extended symptoms associated with Long Covid. Findings highlight the need for greater consensus around physical activity-related advice for people with Long Covid and improved support to resume activities considered important for wellbeing.Article SummaryStrengths and limitations of this studyTo our knowledge, this paper is the first to explore the role of physical activity in the lived experience of Long Covid using a qualitative approachThe study design enabled in-depth inquiry of lived experiences in a diverse sampleInductive thematic analysis ensured descriptions and interpretations of the lived experience were tested and found to be grounded in the dataParticipants were recruited from members of a Long Covid research interest database who registered via an on-line form, meaning study findings might not capture the views of digitally excluded populationsFunding statementThis work was supported by Sheffield Hallam University.Competing interestsAll authors have completed the ICMJE uniform disclosure form at www.icmje.org/coi_disclosure.pdf and declare: no support from any organization for the submitted work; no financial relationships with any organizations that might have an interest in the submitted work in the previous three years; no other relationships or activities that could appear to have influenced the submitted work.

scholarly journals Diverting young men from gangs: a qualitative evaluation

2019 ◽  
Vol 42 (5) ◽  
pp. 887-900
Author(s):  
Laura Jane Boulton ◽  
Rebecca Phythian ◽  
Stuart Kirby
Keyword(s):  
At Risk ◽  
Young People ◽  
Lived Experience ◽  
Preventive Intervention ◽  
Qualitative Evaluation ◽  
Well Being ◽  
Organised Crime ◽  
Structured Interviews ◽  
Content Type ◽  
The Uk

Purpose Serious organised crime (SOC) costs the UK billions of pounds every year and is associated with significant negative health, social and well-being outcomes. The purpose of this paper is to evaluate whether young people can be diverted from involvement in SOC using preventive intervention approaches. Design/methodology/approach A qualitative thematic analysis was conducted on data collected from semi-structured interviews with practitioners involved in a six-month intervention which specifically aimed to divert “at risk” young people away from SOC involvement. Findings Themes arising from the analysis are: risk and vulnerability factors associated with young people involved in organised crime; what worked well during this intervention; what outcomes, both hard and soft, were generated; as well as, the specific challenges to the success of preventive programmes’ success. Practical implications Overall, the study highlights the problematic nature of diverting “at risk” youths from SOC and provides recommendations for future preventive intervention work in the field of SOC. Specifically, it suggests that longer-term interventions, targeted at younger children, may generate better behavioural outcomes if they focus on building trusting relationships with credible support workers (i.e. have lived experience of SOC). Originality/value With a growing body of evidence suggesting that young people are being increasingly exploited for organised criminal purposes, an approach which prevents involvement in SOC makes theoretical and economic sense. However, little research has empirically tested its utility in practice. This study seeks to address this gap.

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