P232 The impact of COVID-19 on the relationships between parents of young people diagnosed with cystic fibrosis and the cystic fibrosis multidisciplinary team

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.

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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

Journal of Medical Psychology ◽

10.3233/jmp-200027 ◽

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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The impact of dysglycaemia on bone mineral accrual in young people with cystic fibrosis

Clinical Endocrinology ◽

10.1111/j.1365-2265.2012.04484.x ◽

2012 ◽

Vol 78 (1) ◽

pp. 36-42 ◽

Cited By ~ 10

Author(s):

Malay Rana ◽

Craig F. Munns ◽

Hiran Selvadurai ◽

Julie Briody ◽

Maria E. Craig

Keyword(s):

Cystic Fibrosis ◽

Young People ◽

Bone Mineral ◽

The Impact ◽

Bone Mineral Accrual

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

Journal of Research in Nursing ◽

10.1177/1744987117732615 ◽

2017 ◽

Vol 22 (6-7) ◽

pp. 479-491 ◽

Cited By ~ 1

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.

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Multidisciplinary team decision is rare and decreasing in percutaneous vascular interventions despite positive impact on in-hospital outcomes

VASA ◽

10.1024/0301-1526/a000771 ◽

2019 ◽

Vol 48 (3) ◽

pp. 262-269 ◽

Cited By ~ 3

Author(s):

Christian-Alexander Behrendt ◽

Tilo Kölbel ◽

Thea Schwaneberg ◽

Holger Diener ◽

Ralf Hohnhold ◽

...

Keyword(s):

Multidisciplinary Team ◽

Positive Impact ◽

Cross Sectional Study ◽

Invasive Treatment ◽

Cross Sectional ◽

Hospital Outcomes ◽

Vascular Intervention ◽

Medical Specialties ◽

Team Decision ◽

The Impact

Abstract. Background: Worldwide prevalence of peripheral artery disease (PAD) is increasing and peripheral vascular intervention (PVI) has become the primary invasive treatment. There is evidence that multidisciplinary team decision-making (MTD) has an impact on in-hospital outcomes. This study aims to depict practice patterns and time changes regarding MTD of different medical specialties. Methods: This is a retrospective cross-sectional study design. 20,748 invasive, percutaneous PVI of PAD conducted in the metropolitan area of Hamburg (Germany) were consecutively collected between January 2004 and December 2014. Results: MTD prior to PVI was associated with lower odds of early unsuccessful termination of the procedures (Odds Ratio 0.662, p < 0.001). The proportion of MTD decreased over the study period (30.9 % until 2009 vs. 16.6 % from 2010, p < 0.001) while rates of critical limb-threatening ischemia (34.5 % vs. 42.1 %), patients´ age (70 vs. 72 years), PVI below-the-knee (BTK) (13.2 % vs. 22.4 %), and rates of severe TASC C/D lesions BTK (43.2 % vs. 54.2 %) increased (all p < 0.001). Utilization of MTD was different between medical specialties with lowest frequency in procedures performed by internists when compared to other medical specialties (7.1 % vs. 25.7 %, p < 0.001). Conclusions: MTD prior to PVI is associated with technical success of the procedure. Nonetheless, rates of MTD prior to PVI are decreasing during the study period. Future studies should address the impact of multidisciplinary vascular teams on long-term outcomes.

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Age at Exposure to Parental Suicide and the Subsequent Risk of Suicide in Young People

Crisis ◽

10.1027/0227-5910/a000468 ◽

2018 ◽

Vol 39 (1) ◽

pp. 27-36 ◽

Cited By ~ 5

Author(s):

Kuan-Ying Lee ◽

Chung-Yi Li ◽

Kun-Chia Chang ◽

Tsung-Hsueh Lu ◽

Ying-Yeh Chen

Keyword(s):

Young People ◽

Proportional Hazards ◽

Proportional Hazards Model ◽

Cox Proportional Hazards ◽

Cox Proportional Hazards Model ◽

Birth Registry ◽

Data Set ◽

Parental Suicide ◽

The Impact ◽

Age At Exposure

Abstract. Background: We investigated the age at exposure to parental suicide and the risk of subsequent suicide completion in young people. The impact of parental and offspring sex was also examined. Method: Using a cohort study design, we linked Taiwan's Birth Registry (1978–1997) with Taiwan's Death Registry (1985–2009) and identified 40,249 children who had experienced maternal suicide (n = 14,431), paternal suicide (n = 26,887), or the suicide of both parents (n = 281). Each exposed child was matched to 10 children of the same sex and birth year whose parents were still alive. This yielded a total of 398,081 children for our non-exposed cohort. A Cox proportional hazards model was used to compare the suicide risk of the exposed and non-exposed groups. Results: Compared with the non-exposed group, offspring who were exposed to parental suicide were 3.91 times (95% confidence interval [CI] = 3.10–4.92 more likely to die by suicide after adjusting for baseline characteristics. The risk of suicide seemed to be lower in older male offspring (HR = 3.94, 95% CI = 2.57–6.06), but higher in older female offspring (HR = 5.30, 95% CI = 3.05–9.22). Stratified analyses based on parental sex revealed similar patterns as the combined analysis. Limitations: As only register-based data were used, we were not able to explore the impact of variables not contained in the data set, such as the role of mental illness. Conclusion: Our findings suggest a prominent elevation in the risk of suicide among offspring who lost their parents to suicide. The risk elevation differed according to the sex of the afflicted offspring as well as to their age at exposure.

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To Study & Implementation the Impact of Youth Mentoring

GIS Business ◽

10.26643/gis.v14i4.5434 ◽

2019 ◽

Vol 14 (4) ◽

pp. 122-129

Author(s):

Monika Bansal ◽

Sh. Lbs Arya Mahila

Keyword(s):

Young People ◽

Effect Size ◽

Professional Growth ◽

Young Person ◽

Youth Mentoring ◽

Self Development ◽

Study Implementation ◽

Responsible Adult ◽

The Impact

Youth Mentoring is the process of matching mentors with young people who need or want a caring responsible adult in their lives. It is defined as an on-going relationship between a caring adult and a young person which is required for self-development, professional growth and carrier development of the mentee and mentors both and all this must be placed within a specific institution context. The purpose of this article is to quantitatively review the three major areas of mentoring research (youth, academic, and workplace) to determine the overall effect size associated with mentoring outcomes for students.

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THE IMPACT OF "PUBLIC CULTURE" ON YOUTH SPIRITUALITY

INTERNATIONAL JOURNAL OF CONSENSUS ◽

10.26739/2181-0788-2020-3-15 ◽

2020 ◽

Vol 3 (1) ◽

pp. 130-135

Author(s):

Mukhiddin Tursunmuratov ◽

Keyword(s):

Popular Culture ◽

Young People ◽

Public Culture ◽

And Behavior ◽

The Impact

This article provides a detailed description and explanation of the term "popular culture". It also analyzes a number of aspects of "popular culture" that are becoming more widespread today, their role and influence in the formation of the minds and behavior of young people, and draws the necessary conclusions. Most importantly, it also describes ways to protect young people from threats in the form of "popular culture" that negatively affect their morale.

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