Nurses’ and Doctors’ Experiences of Transferring Adolescents or Young Adults With Long-Term Health Conditions From Pediatric to Adult Care: A Metasynthesis

The transfer of adolescents and young adults (AYA) with long-term health conditions from pediatric to adult care is a multidisciplinary enterprise where nurses and doctors play an important role. This review aimed to identify and synthesize evidence from qualitative primary reports on how nurses and doctors experience the transfer of AYA aged 13 to 24 years with long-term health conditions to an adult hospital setting. We systematically searched seven electronic databases for reports published between January 2005 and November 2021 and reporting nurses’ and doctors’ experiences. We meta-summarized data from 13 reports derived from 11 studies published worldwide. Using qualitative content analysis, we metasynthesized nurses’ and doctors’ experiences into the theme “being boosters.” Boosting AYA’s transfer was characterized by supporting AYA’s and their parents’ changing roles, smoothening AYA’s transition from pediatric to adult care, and handling AYA’s encounters with a different care culture.publishedVersio

Being cross pressured-parents' experiences of the transfer from paediatric to adult care services for their young people with long term conditions:A systematic review and qualitative research synthesis

Background: Family members of young people (13–24 years) with long-term conditions tend to experi- ence multiple challenges when their children transfer from paediatric to adult care, as do the patients themselves. Objectives: To identify, interpret and theoretically conceptualise the meaning of parents’ experiences of the transfer from paediatric to adult care of their young people with long-term conditions. Design: A qualitative research synthesis. Data sources: We obtained articles from Medline, CINAHL, PsycINFO, EMBASE, Scopus, and Web of Science. Unpublished theses and dissertations were searched for using Google Scholar, Mednar, and ProQuest Dis- sertations and Theses. Review methods: Based on a previously published protocol, we followed the guidelines from the Joanna Briggs Institute. Sandelowski and Barroso’s qualitative research synthesis approach guided the metasyn- thesis. Articles published between 1999 and March 2019 were systematically searched for. Findings: Twenty-three reports from seven Western countries representing 454 parents including signif- icant others such as aunts and grandparents of 462 young people with various diagnoses contributed to the review. ‘Being cross-pressured’ was the metasynthesis found to reflect parents’ experiences of the transfer from paediatric to adult care of their young people with long-term conditions. The metasynthesis comprised four themes: ‘Fluctuating between parental roles’, ‘Navigating contrasting healthcare contexts’, ‘Making decisions in the face of inner conflict’, and ‘Trusting their child’s self-management ability’. Conclusions: Our metasynthesis finding of parents’ experiences of being cross-pressured provides a new way of thinking about the study phenomena which is supported by transitions theory holding that mul- tiple transitions can take place simultaneously involving myriads of concurrent and conflicting demands. The cross pressure may overwhelm parents. The clinical implications are to recognise parents’ experi- ences and distress in healthcare planning to promote safe and predicable transfers of their young peo- ple. Provision of healthcare to parents during transfer needs to be tailored to a collaborative decision- making process between parents, their young people, and involved practitioners across paediatric and adult healthcare services.publishedVersio

Adolescents' and young adults' transition experiences when transferring from paediatric to adult care: A qualitative metasynthesis

Author's version of an article in the journal: International Journal of Nursing Studies. Also available from the publisher at: http://dx.doi.org/10.1016/j.ijnurstu.2013.02.001Objectives: The objective of this study was to synthesize qualitative studies of how adolescents and young adults with chronic diseases experience the transition from paediatric to adult hospital care. Design: The review is designed as a qualitative metasynthesis and is following Sandelowski and Barroso's guidelines for synthesizing qualitative research. Data sources: Literature searches were conducted in the databases PubMed, Ovid, Scopus, Cumulative Index to Nursing and Allied Health Literature (CINAHL), ISI Web of Science, and Nordic and German databases covering the period from 1999 to November 2010. In addition, forward citation snowball searching was conducted in the databases Ovid, CINAHL, ISI Web of Science, Scopus and Google Scholar. Review methods: Of the 1143 records screened, 18 studies were included. Inclusion criteria were qualitative studies in English, German or Nordic languages on adolescents' and young adults' transition experiences when transferring from paediatric to adult care. There was no age limit, provided the focus was on the actual transfer process and participants had a chronic somatic disease. The studies were appraised as suitable for inclusion using a published appraisal tool. Data were analyzed into metasummaries and a metasynthesis according to established guidelines for synthesis of qualitative research. Results: Four themes illustrating experiences of loss of familiar surroundings and relationships combined with insecurity and a feeling of being unprepared for what was ahead were identified: facing changes in significant relationships, moving from a familiar to an unknown ward culture, being prepared for transfer and achieving responsibility. Conclusions: Young adults' transition experiences seem to be comparable across diagnoses. Feelings of not belonging and of being redundant during the transfer process are striking. Health care professionals' appreciation of young adults' need to be acknowledged and valued as competent collaborators in their own transfer is crucial, and may protect them from additional health problems during a vulnerable phase. Further research including participants across various cultures and health care systems is needed

Time and change: A typology for presenting research findings in qualitative longitudinal research

Background: Qualitative longitudinal research (QLR) is an emerging methodology used in health research. The method literature states that the change in a phenomenon through time should be the focus of any QLR study, but in empirical studies, the analysis of changes through time is often poorly described, and the emphasis on time/change in the findings varies greatly. This inconsistency might depend on limitations in the existing method literature in terms of describing how QLR studies can present findings. The aim of this study was to develop and describe a typology of alternative approaches for integrating time and/or change in QLR findings. Methods: In this method study, we used an adapted scoping review design. Articles were identified using EBSCOhost. In total, methods and results sections from 299 QLR articles in the field of health research were analyzed with inspiration from content analysis. Results: We constructed a typology of three types and seven subtypes. The types were based on the underlying structural principles of how time/change was presented: Type A) Findings have a low utilization of longitudinal data, Type B) Findings are structured according to chronological time, and Type C) Findings focus on changes through time. These types differed in 1) the way the main focus was on time, change or neither; 2) the level of interpretation in the findings; and 3) how theoretical understandings of time/change were articulated in the articles. Each type encompassed two or three subtypes that represented distinct approaches to the aim and results presentation of QLR findings. Conclusions: This method study is the first to describe a coherent and comprehensive typology of alternative approaches for integrating time/change into QLR findings in health research. By providing examples of various subtypes that can be used for results presentations, it can help researchers make informed decisions suitable to their research intent.publishedVersio

The Influence of Strategic Patenting on Companies’ Patent Portfolios

This paper analyses whether strategic motives for patenting influence the characteristics of companies’ patent portfolios. We use the number of citations and oppositions to represent these characteristics. The investigation is based on survey and patent data from German companies. We find clear evidence that the companies’ patenting strategies explain the characteristics of their patent portfolios. First, companies using patents to protect their technological knowledge base receive a higher number of citations for their patents. Second, the motive of offensive – but not of defensive – blocking is related to a higher incidence of oppositions, whereas companies using patents as bartering chips in collaborations receive fewer oppositions to their patents

To be financed or not : the role of patents for venture capital financing

This paper investigates how patent applications and grants held by new ventures improve their ability to attract venture capital (VC) financing. We argue that investors are faced with considerable uncertainty and therefore rely on patents as signals when trying to assess the prospects of potential portfolio companies. For a sample of VC-seeking German and British biotechnology companies we have identified all patents filed at the European Patent Office (EPO). Applying hazard rate analysis, we find that in the presence of patent applications, VC financing occurs earlier. Our results also show that VCs pay attention to patent quality, financing those ventures faster which later turn out to have high-quality patents. Patent oppositions increase the likelihood of receiving VC, but ultimate grant decisions do not spur VC financing, presumably because they are anticipated. Our empirical results and interviews with VCs suggest that the process of patenting generates signals which help to overcome the liabilities of newness faced by new ventures

Hundreds of variants clustered in genomic loci and biological pathways affect human height

Most common human traits and diseases have a polygenic pattern of inheritance: DNA sequence variants at many genetic loci influence the phenotype. Genome-wide association (GWA) studies have identified more than 600 variants associated with human traits, but these typically explain small fractions of phenotypic variation, raising questions about the use of further studies. Here, using 183,727 individuals, we show that hundreds of genetic variants, in at least 180 loci, influence adult height, a highly heritable and classic polygenic trait. The large number of loci reveals patterns with important implications for genetic studies of common human diseases and traits. First, the 180 loci are not random, but instead are enriched for genes that are connected in biological pathways (P = 0.016) and that underlie skeletal growth defects (P < 0.001). Second, the likely causal gene is often located near the most strongly associated variant: in 13 of 21 loci containing a known skeletal growth gene, that gene was closest to the associated variant. Third, at least 19 loci have multiple independently associated variants, suggesting that allelic heterogeneity is a frequent feature of polygenic traits, that comprehensive explorations of already-discovered loci should discover additional variants and that an appreciable fraction of associated loci may have been identified. Fourth, associated variants are enriched for likely functional effects on genes, being over-represented among variants that alter amino-acid structure of proteins and expression levels of nearby genes. Our data explain approximately 10% of the phenotypic variation in height, and we estimate that unidentified common variants of similar effect sizes would increase this figure to approximately 16% of phenotypic variation (approximately 20% of heritable variation). Although additional approaches are needed to dissect the genetic architecture of polygenic human traits fully, our findings indicate that GWA studies can identify large numbers of loci that implicate biologically relevant genes and pathways.

Self-esteem is associated with premorbid adjustment and positive psychotic symptoms in early psychosis

<p>Abstract</p> <p>Background</p> <p>Low levels of self-esteem have been implicated as both a cause and a consequence of severe mental disorders. The main aims of the study were to examine whether premorbid adjustment has an impact on the subject's self-esteem, and whether lowered self-esteem contributes to the development of delusions and hallucinations.</p> <p>Method</p> <p>A total of 113 patients from the Thematically Organized Psychosis research study (TOP) were included at first treatment. The Positive and Negative Syndrome Scale (PANSS) was used to assess present symptoms. Premorbid adjustment was measured with the Premorbid Adjustment Scale (PAS) and self-esteem by the Rosenberg Self-Esteem Scale (RSES).</p> <p>Results</p> <p>Premorbid social adjustment was significantly related to lower self-esteem and explained a significant proportion of the variance in self-esteem. Self-esteem was significantly associated with the levels of persecutory delusions and hallucinations experienced by the patient and explained a significant proportion of the variance even after adjusting for premorbid functioning and depression.</p> <p>Conclusion</p> <p>There are reasons to suspect that premorbid functioning is an important aspect in the development of self- esteem, and, furthermore, that self-esteem is associated with the development of delusions and hallucinations.</p