Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis

2017 ◽  
Vol 22 (6-7) ◽  
pp. 479-491 ◽  
Author(s):  
Kath MacDonald
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Capital Mobility ◽  
Healthcare Team ◽  
Self Worth ◽  
Dissemination Of Research ◽  
Alternative Means ◽  
Research Findings ◽  
Holistic Interpretation ◽  
The Impact

Living with chronic illness can lead to a spiral of losses including social capital, mobility, physical health and self-worth. One method of coping with a long-term condition is normalcy: psychological bracketing of the illness as a means of coping, and may include the embodiment of treatment as part of the norm. This paper explores the concept of normalcy in young people with cystic fibrosis, disseminated through poetry. The theme of normalcy emerged in a study exploring the experiences of young ‘expert patients’ in partnership with their healthcare team. Observations of outpatient consultations between 10 young people with cystic fibrosis (CF), two carers and the CF team ( n = 11) and subsequent interviews were undertaken to explore perceptions of partnership. Once findings emerged from the original study these were recrafted into poems as an alternative means of dissemination. The poetry from ‘what’s in a norm?’ reflects the young people’s voices and the writer’s interpretation of how normalcy has become embedded into their ways of being. Minimising the impact of CF in this sample was commonplace. Normalcy as a concept emerged strongly in young people with CF in this study. Almost exclusively young people viewed the range of treatments and symptoms as not significant. Further probing revealed a very different picture, one of heavy treatment burden and symptom management. Normalcy may serve as a positive means of coping with the burden of disease. Dissemination of research findings through poetry can enhance nurses’ empathic understanding and provide holistic interpretation of events rather than just summative findings.

Wellbeing, young people, and music scenes

2019 ◽  
pp. 187-196 ◽  
Author(s):  
Andy Bennett ◽  
Lisa Nikulinsky
Keyword(s):  
Young People ◽  
Empirical Data ◽  
Sense Of Self ◽  
Psychological Wellbeing ◽  
Localized Source ◽  
Music Scenes ◽  
Academic Scholarship ◽  
Self Worth ◽  
Research Findings ◽  
The Relationship

This chapter considers how young people’s involvement in a local or virtual music scene can be important in terms of providing them with a sense of self-worth and esteem. Although the topic of music scenes has been comprehensively researched in academic scholarship, the connection between scene membership and physical and psychological wellbeing has not to date been a topic of focus. The chapter draws on original empirical data generated during interviews with young people in Margaret River, Western Australia, in 2016–17. Although our research findings originate from a localized source, they can be extrapolated to broader debates concerning the relationship between young people, music, and wellbeing.

scholarly journals Improving dissemination of study results: perspectives of individuals with cystic fibrosis

2019 ◽  
Vol 15 (3-4) ◽  
pp. 1-14
Author(s):  
Emily Christofides ◽  
Karla Stroud ◽  
Diana Elizabeth Tullis ◽  
Kieran C. O’Doherty
Keyword(s):  
Cystic Fibrosis ◽  
Research Ethics ◽  
Research Results ◽  
Research Participants ◽  
Study Results ◽  
Research Findings ◽  
The Impact ◽  
To Receive ◽  
Accessible Format

The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and what research participants’ views are in this regard. We interviewed 21 adults with cystic fibrosis who had previously participated in research and 2 research coordinators at a cystic fibrosis clinic. We aimed to better understand research participants’ views on receiving research results, types of findings they are interested in, how they would like to receive this information, and the impact this might have on future participation. Participants reported that they do not generally recall receiving study findings, though many reported that they would like to receive them. While some participants were not interested in receiving results, all participants felt that these results should be provided when desired by participants and believed that receiving study findings would support future participation. Participants felt that an accessible format, such as a lay summary, would be most helpful. This study supports calls to make study findings available to participants, though the format in which they are provided requires consideration. Participants rarely recalled receiving findings despite the clinic in which this study was conducted returning them regularly. Therefore, questions pertaining to the provision of study findings must focus less on whether to share the findings and more on how to share them with participants most effectively. The logistics of providing study findings may be challenging in some cases, but participant support for the practice highlights its importance.

scholarly journals P451 Experience of living with cystic fibrosis; the impact on children, young people, adults and their families

2019 ◽  
Vol 18 ◽  
pp. S185
Author(s):  
M. McKenzie Smith ◽  
R. Shafran ◽  
N. Kouzoupi ◽  
C. Lewis ◽  
J. Ali ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
The Impact

scholarly journals P141 Young Ambassadors Project: engaging patients attending a specialised young adult clinic

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Ines Soares ◽  
Caroline Cotton ◽  
Lorraine Brinkley ◽  
Cristina Estrach
Keyword(s):  
Young Adult ◽  
Young People ◽  
Rheumatic Diseases ◽  
Young Patients ◽  
Adult Patients ◽  
Support Network ◽  
Healthcare Team ◽  
Clinical Area ◽  
Age Appropriate ◽  
The Impact

Abstract Background Emerging literature has highlighted that transition to adult services is a challenging time where many young patients are lost to follow up and disengage with health services. Furthermore, developmentally appropriate healthcare improves adherence and empowers young people. This recognises the changing biopsychosocial development needs of young people and advocates for a ‘young-person-friendly’ service. Aintree Hospital runs a young adult clinic based on the EULAR guidelines. Attending patients suggested that their positive experience could support and improve engagement of peers ready for transition. At the same time, they raised that the existing shared clinical area did not feel tailored to them given the lack of age-appropriate literature and lack of representation in the existing displays. This feedback led the team to a review of the service with the ultimate aim to improve patient engagement and satisfaction. Methods Using Plan-Do-Study-Act (PDSA) quality improvement methodology, a multidisciplinary healthcare team alongside a group of willing young adult patients (Young Ambassadors) identified a strategy to improve the young adult clinical area and facilitate transition peer support. Pilot funding was obtained from the Trust, with the aim to expand the methods to other specialities if successful. Results The team worked with the Young Ambassadors and a professional media company to produce ‘pop-ups’ featuring photographs of our young adult patients with positive inspirational messages. These were purposefully produced as mobile units rather than static posters to increase flexibility of use. We also improved the availability of age-appropriate literature in the waiting room (e.g. literature from Arthur’s Place, a magazine and social network for young adults with arthritis). Additionally, we developed a set of videos featuring three of our Young Ambassadors talking about their transition experience and how this affected their day-to-day lives. The videos will be available to patients ready to enter transition while still in children’s services. We envisage that this initiative will provide a patient perspective of living with chronic conditions, empower young people to take control of their health needs and therefore increase adherence, independence and promote positive career and life goals. Lastly, through the project and focus group sessions, our patients have already started a support network for young patients with rheumatic diseases. Conclusion Our young patients are keen to be involved in service development and wish to raise awareness of their life with chronic rheumatic diseases. We will measure the impact of our interventions through patient satisfaction questionnaires, group feedback sessions and by auditing patient attendance rates pre- and post-project. By working with our Young Ambassadors, we have successfully developed patient-led initiatives, tailored to young adult patients with the aim of improving future engagement and empowerment. Disclosures I. Soares None. C. Cotton None. L. Brinkley None. C. Estrach None.

Analysis of the prevalence of smoking among young people taking into account socio-economic and psycho-emotional factors

2021 ◽  
pp. 59-68
Author(s):  
Vladimir Nikolaevich Dolich ◽  
Nataliya Evgen’evna Komleva ◽  
Inna Viktorovna Zaikina ◽  
Svyatoslav Igorevich Mazilov ◽  
Sergej Sergeevich Rajkin ◽  
...  
Keyword(s):  
Young People ◽  
Tobacco Smoking ◽  
Psychological Factors ◽  
Electronic Cigarettes ◽  
Well Being ◽  
Emotional Factors ◽  
High Prevalence ◽  
Alternative Means ◽  
High Level ◽  
The Impact

The article is devoted to the study of factors contributing to the formation of adherence to smoking in young people. The study involved 300 young people, of which 154 people are students of the Saratov College of Water Transport, Construction and Service, 146 people are students of a medical university. The study of smoking prevalence was carried out using adapted questionnaires that include questions about adherence to tobacco smoking, as well as modern alternative means of smoking (electronic cigarettes), awareness of the dangers of smoking tobacco products and electronic cigarettes. Were studied the socio-economic and psychological factors that contribute to the formation of addiction. The results of the study indicate a high prevalence of smoking among young people surveyed, while more than half of all respondents who smoke prefer alternative means of smoking. It should be noted that there is a higher prevalence of alternative means of smoking among girls compared to boys. It was found that smoking electronic cigarettes prevails among people with a higher level of material well-being. The results of studying the awareness of respondents about the dangers of tobacco smoking showed a high level of awareness of the respondents. At the same time, awareness of the dangers of alternative means of smoking is at a lower level. An analysis of the study of the reasons for starting smoking among study participants showed that persons living separately from their parents are more susceptible to smoking. According to the respondents themselves, an important role in the formation of adherence to an addiction is played by a negative example of the social environment (smoking of parents, friends, acquaintances). The correlation analysis revealed the relationship between smoking and the level of psychoemotional stress. Thus, the result of this study indicates that the high prevalence of smoking among young people is due to the impact of socioeconomic and psychological factors that must be taken into account in the fight against the formation of addiction among the younger generation. English version of the article is available at URL: https://panor.ru/articles/analysis-of-the-prevalence-of-smoking-among-young-people-taking-into-account-socio-economic-and-psycho-emotional-factors/75548.html

Re-orientating Dietetic Interventions for Adults with Eating and Weight Concerns: A Qualitative Study of the Well Now course – Part 1

2016 ◽  
Vol 3 (2) ◽  
pp. 56-66
Author(s):  
Lucy Aphramor ◽  
Nazanin Khasteganan
Keyword(s):  
Focus Groups ◽  
Interpersonal Relationships ◽  
Sense Of Self ◽  
Health Gain ◽  
Weight Concerns ◽  
Structured Interviews ◽  
Making Sense ◽  
Self Worth ◽  
Research Findings ◽  
The Impact

This research examines the impact of attending a Well Now course on participants’ wellbeing and contrasts this with their reports of previous experiences of seeking support with weight concerns. The Well Now course teaches health-gain and body respect. As such, it offers people a way of making sense of their experiences around food and eating that is premised on criticality, compassion and respect. This is the first of two articles discussing research findings. This was a qualitative, community-based study using semi-structured interviews and focus groups. The participants were women and men who had completed a 6 session Well Now course. Interviews and focus groups were recorded and transcribed verbatim and data were manually sorted. Coding categories were developed and participants’ quotes were assigned to these using thematic analysis. The study had ethics approval*. Participants described how engaging with the Well Now philosophy in a supportive group had beneficially impacted their health and sense of self-worth. The reorientation made available through Well Now enhanced psychosocial variables and behaviours known to impact on health, such as mood, self-esteem, eating/exercise habits and interpersonal relationships. They recounted instances where recommendations to follow a weight-corrective approach, and attendant size bias seen in health practitioner’s attitudes, had had a detrimental impact on their wellbeing and sense of self-worth. A professional commitment to socio-politically aware practice is recommended as a means of advancing equity, helping people heal from body shame and meeting our ethical responsibilities as health practitioners.  

scholarly journals Dyslexia, Literacy Difficulties and the Self-Perceptions of Children and Young People: a Systematic Review

2019 ◽  
Author(s):  
Rosa Gibby-Leversuch ◽  
Brettany K. Hartwell ◽  
Sarah Wright
Keyword(s):  
Systematic Review ◽  
Young People ◽  
Attributional Style ◽  
The Self ◽  
Attributional Styles ◽  
Children And Young People ◽  
Self Perceptions ◽  
Positive Attitudes ◽  
Self Worth ◽  
The Impact

Abstract This systematic review investigates the links between literacy difficulties, dyslexia and the self-perceptions of children and young people (CYP). It builds on and updates Burden’s (2008) review and explores how the additional factors of attributional style and the dyslexia label may contribute to CYP’s self-perceptions. Nineteen papers are included and quality assessed. Quantitative papers measured the self-reported self-perceptions of CYP with literacy difficulties and/or dyslexia (LitD/D) and compared these with the CYP without LitD/D. Qualitative papers explored the lived experiences of CYP with LitD/D, including their self-views and how these were affected by receiving a dyslexia diagnosis. Results suggest that CYP with LitD/D may be at greater risk of developing negative self-perceptions of themselves as learners, but not of their overall self-worth. Factors found to be relevant in supporting positive self-perceptions include adaptive attributional styles, good relationships with peers and parents, and positive attitudes towards dyslexia and neurodiversity. In some cases, CYP with LitD/D felt that others perceived them as unintelligent or idle; for these CYP, a diagnosis led to more positive self-perceptions, as it provided an alternative picture of themselves. There is a need for further research to explore the impact of attributional style and the potential for intervention, as well as CYPs’ experiences of diagnosis and the associated advantages or disadvantages.

scholarly journals Eliciting the impact of digital consulting for young people living with long term conditions (LYNC study): which Patient Reported Outcome Measure? (Preprint)

2018 ◽  
Author(s):  
Jackie Sturt ◽  
Rebecca Dliwayo ◽  
Vera Forjaz ◽  
Kathryn Hamilton ◽  
Carol Bryce ◽  
...  
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Patient Reported Outcome ◽  
Clinical Psychologist ◽  
Long Term Conditions ◽  
Face To Face ◽  
Scoping Reviews ◽  
Patient Reported ◽  
The Impact

BACKGROUND Digital consulting e.g. email, text and skype is increasingly offered to young people accessing specialist care for long term conditions. No patient reported outcome measures (PROM) have been evaluated for assessing outcomes of digital consulting. Systematic and scoping reviews, alongside patient involvement revealed two candidate PROMs for this purpose, the Patient Activation Measure (PAM) and the Physician’s Humanistic Behaviours Questionnaire (PHBQ). PAM measures knowledge, beliefs and skills that enable people to manage their long term condition. The PHBQ measures the extent to which behaviours that are important to patients in their physician-patient interactions are present. OBJECTIVE To explore i) whether the PAM and the PHBQ elicit important outcomes of digital consulting ii) whether the PROMs can isolate the digital consultation component of care. METHODS Participants were drawn from five clinics providing specialist NHS care to 16-24yrs olds with long term health conditions participating in the wider LYNC study. Fourteen people were convenience sampled and consented to have a cognitive interview in this sub-study. Seven participants were young people with either inflammatory bowel disease, cystic fibrosis or cancer. Seven clinicians were clinical psychologist, two nurses, three consultants and a community youth worker practising in Cancer, Diabetes, Cystic Fibrosis and Liver disease. Cognitive interviews were transcribed and analysed and a spread sheet recorded participants’ PROM item appraisals. Illustrative quotes were extracted verbatim from the interviews for all participants. RESULTS Young people found 10 of the PAM 13 items to be relevant to digital consulting and fewer of the additional PAM 22 items. They were only able to provide a spontaneous examples of digital consulting for 50% of the 22 items. Four of the 6 clinicians appraised 12 of the PAM 13 items and 19 of the PAM 22 items to be relevant to evaluating digital consulting and articulated operationalisation of the items with reference to their own digital consulting practice with greater ease than the young people. Appraising the PHBQ, in 14 of the 25 items (56%) 2/3rds of young people’s appraisals offered digital consulting examples with ease suggesting that the young people can detect and discern humanistic clinician behaviours via digital as well as face to face communication channels. Seventeen of the 25 items (68%) were appraised as relevant by the young people. This finding was mirrored in the clinician appraisals. Both young people and clinicians found the research task complex. Young participants required considerably more researcher prompting to illicit examples related to digital consulting rather than their face to face care. CONCLUSIONS The PAM and the PHBQ have satisfactory face and content validity for evaluating digital consulting to warrant proceeding to psychometric evaluation. Completion instructions require revision to differentiate between digital and face to face consultations.

scholarly journals An Investigation into the Impact of COVID-19 on the Relationships Between Parents of Children Diagnosed with Cystic Fibrosis and the Cystic Fibrosis Multi-Disciplinary Team

2021 ◽  
pp. 1-7
Author(s):  
Steve Jones ◽  
Leanne Smith ◽  
Katie Ainsworth
Keyword(s):  
Cystic Fibrosis ◽  
Young People ◽  
Interpersonal Relationships ◽  
Structured Interviews ◽  
Working Models ◽  
Specialist Centre ◽  
Clinical Models ◽  
The Impact ◽  
The Relationship ◽  
Multi Disciplinary Team

Background: The COVID-19 pandemic has seen working practice in Cystic Fibrosis (CF) move to more remote clinical models. This study assesses the impact of shifting working models on the relationships between families of young people with CF and CF Multi-disciplinary Teams (MDT) as well as parents perceptions of working remotely. Methods: Six semi-structured interviews with parents of young people under the care of a regional UK CF specialist centre were analysed using Inductive content analysis. Results: Three domains emerged: Interpersonal Relationships, Remote Clinics and CF in the Context of COVID-19. The enduring and close relationships between the MDT and families were discussed as well as the acceptability of remote clinics moving forwards. Conclusions: The importance of the quality in the relationship between families and CF MDTs is vital to enhance ongoing care. Remote working was acceptable in the context of COVID-19 and with some considerations could be useful moving forwards.

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