In this Communication article, we share experiences of collaborating with members of the public during health education. We aim to inspire bachelor, masters and PhD students to engage with patients ...and the public during their undergraduate, graduate and postgraduate thesis work and to inspire educators to collaborate with patient and public involvement/engagement to develop and deliver teaching and offer their students opportunities to engage with patients and the public. We argue that when patients and the public are included in educational projects, such engagement will be an easier task once students graduate. We argue that including patients and the public in educational project work and encouraging reflections with a person with lived experience benefits students in terms of understanding the importance of reflection and validation, setting positive precedence for their future careers.
When researchers are interested in the experiences of couples, the mode of interview is typically considered a binary choice between separate individual interviews with each partner, or a joint ...interview with both partners together. That is, if interview mode is explicitly considered at all. In this article, we illustrate a reflective process undertaken to explore the role of interview mode in the production of knowledge. Our focus is the adoption of multi-level semi-structured interviews wherein couples were interviewed both jointly and individually in one visit. The paper is set out in two parts. In part one, the study context and how the mode of interview was conceptualized is considered, before describing the chosen multi-level interview design. In part two, how the mode of interview worked in practice is discussed. The triangulation of individual and dyadic level perspectives collected rich data. Despite the novelty of mode, the challenges encountered reflected familiar concerns with semi-structured interviews: characteristic match between interviewer and interviewee, recording tacit knowledge, moving beyond normative expression and balancing disclosure with interviewee well-being. The paper concludes with a consideration of our assumptions of what constitutes a “successful” interview and offers guiding reflective questions for researchers who are considering semi-structured interviews. Further research is needed to explore the impact of different interview modes.
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Dostopno za:
DOBA, IZUM, KILJ, NUK, ODKLJ, PILJ, PNG, SAZU, UILJ, UKNU, UL, UM, UPUK
Social theorists have suggested relationship practice changes such as rising rates of nonmarital cohabitation imply external anchors are lifting with relations become increasingly individualized and ...fragile. These suppositions are in part based on theories of commitment which have taken conventional characteristics of marriage as a blueprint from which to compare. Reporting findings from an indepth qualitative study in England, in this paper, what it means to be committed and how commitment is displayed within 10 long-term (15 plus years) couple relationships across forms (same-sex, opposite-sex, married, civil partnership, cohabitant) is explored. The findings challenge conventional signifiers by which cohabitants are deemed less committed than married couples. In line with the individualization thesis, couples described an importance attached to autonomy and equality. Instead of public promises for a lifetime together, sexual intimacy and financial interdependence, couples displayed commitment through mutual reciprocity. However, these' individualized' relationships were not sustained only to the extent of personal satisfaction. Moral consistency values to stick together through adversity, unless the relationship became unhealthy, signified what it meant to be committed; whether the relationship was formalized or not. Further research is needed to develop theories of commitment which better reflect the diversity of contemporary relationship practices.
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Dostopno za:
BFBNIB, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
National clinical guidelines emphasise the need for good communication of information by clinicians to young people and their parent/carers about what to expect during transition into adult services. ...Recent research indicates that of young people in need of transition for attention deficit hyperactivity disorder (ADHD), only a minority experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative analysis explored the role that information plays in the transition from child to adult mental health services for young people with ADHD, from the perspectives of clinicians working in children's services.
Participants were recruited from National Health Service (NHS) Trusts located across the United Kingdom (UK), with varying service configurations. Twenty-two qualitative interviews were conducted with 15 paediatricians and seven psychiatrists working in child services and supporting young people with ADHD. The Framework Method was used to complete a thematic analysis of data related to the role of information in transitional care.
Two themes were identified in relation to the role of information in supporting transition and promoting continuity of care. Information for clinicians; about adult mental health services, the young person and their ADHD, and exchanged between services. Sharing information with young people; about transition processes, self-management, to support service engagement, and tailored to be accessible to young people with ADHD. Clinicians in children's services reported variable access to information. Clear protocols and being able to communicate about ADHD as a long-term condition, were described as having a positive impact on the transition process.
These findings illustrate that clear information on the transition process, and communication of evidence based and up-to-date information on ADHD as a long-term condition are essential components for clinicians supporting transition into adult services. Information exchange can be supported through transition discussions with young people, and joint meetings between services Discussions should be accompanied by accessible resources for young people and parents/carers such as leaflets and websites. Further efforts should be focussed on enabling clinicians to provide timely and appropriate information to young people with ADHD to support transition.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
An emerging body of international research suggests family caregivers may be a high-risk group for suicide, but the evidence has not been synthesised. Forty-eight peer-reviewed journal articles were ...included in this review, spanning low-, middle-, and high-income countries and a variety of illnesses and disabilities. The proportion of caregivers experiencing suicidal ideation ranged from 2.7% to 71%, with evidence of suicide attempts, deaths by suicide, and deaths by homicide-suicide also reported. Risk and protective factors varied across studies and there was little consideration of differences by caregiving relationship, type of illness/disability, or country. There is sufficient evidence to warrant concern for caregivers around the world and prompt action in policy and practice, but more rigorous research is required to draw clear, nuanced conclusions about risk and inform evidence-based prevention and intervention.
Many national and regional clinical guidelines emphasise the need for good communication of information to young people and their parent/carers about what to expect during transition into adult ...services. Recent research indicates only a minority of young people in need of transition for Attention Deficit Hyperactivity Disorder (ADHD) experience continuity of care into adulthood, with additional concerns about quality of transition. This qualitative study explored the role that information plays in experiences of transition from the perspectives of parent/carers and young people.
Participants were recruited from 10 National Health Service Trusts, located across England, with varying service configurations. Ninety two qualitative interviews were conducted: 64 with young people with ADHD at different stages relative to transition, and 28 with parent/carers. Thematic analysis of data was completed using the Framework Method.
Interviewees reported a range of experiences; however reliance on parent/carers to gather and translate key information, and negative experiences associated with poor communication of information, were universal. Three themes emerged: Navigating information with help from parents; Information on ADHD into adulthood; Information about the transition process. The first revealed the essential role of parent in the translation and application of information, the other two explored distinct types of information necessary for a smooth transition. Interviewees made recommendations for clinical practice similar to UK (United Kingdom) National Institute for Health and Care Excellence (NICE) guidelines, with an additional emphasis on providing nuanced information on ADHD as a potentially long term condition. It was important to interviewees that General Practitioners had a basic understanding of adult ADHD and also had access to information about service provision.
Our findings illustrate that the availability and communication of information to young people and their parent/carers is an essential component of the transition process between child and adult ADHD services. How and when it is provided may support or impede transition. This study constitutes a substantial contribution to the evidence base, drawing on interviews from a range of participants across England and from Trusts offering different types of services.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
ADHD affects some individuals throughout their lifespan, yet service provision for adults in the United Kingdom (UK) is patchy. Current methods for mapping health service provision are resource ...intensive, do not map specialist ADHD teams separately from generic mental health services, and often fail to triangulate government data with accounts from service users and clinicians. Without a national audit that maps adult ADHD provision, it is difficult to quantify current gaps in provision and make the case for change. This paper describes the development of a seven step approach to map adult ADHD service provision in the UK.
A mapping method was piloted in 2016 and run definitively in 2018. A seven step method was developed: 1. Defining the target service 2. Identifying key informants 3. Designing the survey 4. Data collection 5. Data analysis 6. Communicating findings 7. Hosting/updating the service map. Patients and members of the public (including clinicians and commissioners) were involved with design, data collection and dissemination of findings.
Using a broad definition of adult ADHD services resulted in an inclusive list of identified services, and allowed the definition to be narrowed to National Health Service (NHS) funded specialist ADHD services at data analysis, with confidence that few relevant services would be missed. Key informants included patients, carers, a range of health workers, and commissioners. A brief online survey, written using lay terms, appeared acceptable to informants. Emails sent using national organisations' mailing lists were the most effective way to access informants on a large scale. Adaptations to the methodology in 2018 were associated with 64% more responses (2371 vs 1446) collected in 83% less time (5 vs 30 weeks) than the pilot. The 2016 map of adult ADHD services was viewed 13,688 times in 17 weeks, indicating effective communication of findings.
This seven step pragmatic method was effective for collating and communicating national service data about UK adult ADHD service provision. Patient and public involvement and engagement from partner organisations was crucial throughout. Lessons learned may be transferable to mapping service provision for other health conditions and in other locations.
Celotno besedilo
Dostopno za:
CEKLJ, DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Phenology in perennial plants implies the temporal occurrence of biological events throughout the year. Heritable phenotypic plasticity in the timing of the phenophases can be of importance in the ...adaptation of woody species to a quickly changing environment. We observed the timing of bud burst, flower opening, leaf senescence and leaf fall in two successive years in a common garden of Crataegus monogyna Jacq. in Belgium, consisting of six local and five non-local provenances. Data were processed with cumulative logistic mixed models. Strong auto-correlation was present among the spring phenophases as well as among the autumnal phenophases, with spring phenophases being negatively correlated with fall phenophases. The strongest between-provenance differentiation was found for the timing of bud burst in spring, followed by flower opening and finally by leaf senescence and leaf fall. Warmer spring temperatures in March 2017 advanced the timing of bud burst, and to a lesser extent of flower opening, in all provenances compared to 2016. However, the advancement was non-linear among the provenances, with the lower latitude provenances being relatively less early and the higher elevation provenances being more late than the local provenances in this year. It can be hypothesized that non-local provenances display larger temporal phenotypic plastic responses in the timing of their spring phenophases compared to local provenances when temperatures in the common garden deviate more from their home-sites.
Background:
In order to prevent cardiac complications, young people with congenital heart disease (CHD) should conduct heart-healthy behaviours. Therefore, they are assumed to have a good ...understanding of their disease. However, empirical data on the relationship between disease-related knowledge and health behaviours in this population is lacking.
Aims:
This study aimed (a) to describe the health risk behaviours of young people with CHD; (b) to describe their level of disease-related knowledge; and (c) to explore the relationship between the level of disease-related knowledge and health risk behaviours.
Methods:
Data were collected in 429 young people with CHD. Health risk behaviours were assessed using the Health Behaviour Scale for CHD and the Baecke questionnaire. Disease-related knowledge was evaluated using the Leuven Knowledge Questionnaire for CHD. An overall health behaviour risk score, a total knowledge score and eight thematic knowledge subscale scores were calculated. Eight relationships between knowledge and health risk behaviours were tested.
Results:
Patients presented moderate to good overall health behaviour. Disease-related knowledge was found to be relatively poor. Furthermore, better understanding of endocarditis was significantly associated with the performance of annual dental visits.
Conclusions:
This study was the first to explore the relationship between disease-related knowledge and health risk behaviours in young people with CHD. Little evidence, however, was found to support this relationship. Additional studies are needed to evaluate the effectiveness of other strategies altering the health-compromising behaviours of these patients.
Health services have not provided adequate support for young people with long term health conditions to transfer from child to adult services. National Institute of Health and Care (NICE) guidance on ...transition has been issued to address these gaps. However, data are often sparse about the number of young adults who might need to transition. Using Attention Deficit Hyperactivity Disorder (ADHD) as an exemplar, this study used an existing surveillance system and a case note review to capture the incidence of the transition process, and compared and contrasted the findings.
The Child and Adolescent Psychiatry Surveillance System (CAPSS) was used to estimate the incident transition of young people with Attention Deficit Hyperactivity Disorder (ADHD) from child to adult services. This involves consultant child and adolescent psychiatrists from the United Kingdom (UK) and Republic of Ireland (ROI) reporting relevant young people as they are seen in clinics. In parallel, a case note review was conducted using the Maudsley Biomedical Research Centre (BRC) Clinical Records Interactive Search (CRIS). The study period ran for twelve months with a nine month follow up to see how the transition proceeded.
CRIS identified 76 cases in the study period, compared to 18 identified using surveillance via CAPSS. Methodological issues were experienced using both methods. Surveillance issues; eligibility criteria confusion, reporting errors, incomplete questionnaires, difficulties contacting clinicians, and surveillance systems do not cover non-doctors and psychiatrists who are not consultants. Case note review issues using CRIS included the need for researchers to interpret clinical notes, the availability and completeness of data in the notes, and data limited to the catchment of one particular mental health trust.
Both methods demonstrate strengths and weaknesses; the combination of both methods in the absence of strong routinely collected data, allowed a more robust estimate of the level of need for service planning and commissioning.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
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