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Article ; Online: Patient and public involvement and engagement (PPIE) in healthcare education and thesis work: the first step towards PPIE knowledgeable healthcare professionals.

Karlsson, Anne Wettergren / Janssens, Astrid

2023 Volume 13, Issue 1, Page(s) e067588

Abstract: 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 ... ...

Abstract	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.
MeSH term(s)	Humans ; Students ; Patient Participation ; Educational Status ; Clinical Competence ; Health Personnel
Language	English
Publishing date	2023-01-05
Publishing country	England
Document type	Journal Article ; Review
ZDB-ID	2599832-8
ISSN	2044-6055 ; 2044-6055
ISSN (online)	2044-6055
ISSN	2044-6055
DOI	10.1136/bmjopen-2022-067588
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Article ; Online: Mothers' Views on the Storage and Usage of Their Children's Biological Material Under the Danish Biobanking Model: A Narrative Approach Using Epistemic Injustice.

Karlsson, Anne Wettergren / Lundsgaard, Helle Holm / Janssens, Astrid

Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research

2023 Volume 26, Issue 9, Page(s) 1308–1313

Abstract: Objectives: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ... ...

Abstract	Objectives: To investigate the knowledge and attitudes of mothers living in Denmark on the storage and usage of their children's biological material. The Danish Neonatal Screening Biobank contains blood from the Phenylketonuria-screening test. Legal, ethical, and moral concerns have been raised in several countries of how consent is obtained best in pediatric biobank governance. Research on knowledge and attitudes of Danish parents on the usage of their children's biological material is scarce. Methods: A coproduced study between a mother and 2 researchers. We analyzed 5 online focus group interviews using Ricoeur's hermeneutical narrative analysis. Results: Mothers have very little knowledge on the storage and usage of their children's biological material. They consider the Phenylketonuria-screening test to be part of a birth package, which leaves very little option of choice. They accept donating the material as a token of appreciation in an act of altruism toward the wider society but are only comfortable supporting Danish research. Conclusions: An exploration of the communal narrative build in the interviews reveal an overall feeling of duty to help benefit society, an overwhelming trust toward the health system, and epistemic unjust storage information practices.
MeSH term(s)	Female ; Infant, Newborn ; Child ; Humans ; Mothers ; Biological Specimen Banks ; Attitude ; Denmark ; Phenylketonurias
Language	English
Publishing date	2023-05-13
Publishing country	United States
Document type	Journal Article
ZDB-ID	1471745-1
ISSN	1524-4733 ; 1098-3015
ISSN (online)	1524-4733
ISSN	1098-3015
DOI	10.1016/j.jval.2023.05.004
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Article ; Online: Getting to Know Your Patient: Content Analysis of Patients' Answers to a Questionnaire for Promoting Person-Centered Care.

Bergers, Juno Hk / Wessels-Wynia, Hester / Seute, Tatjana / Janssens, Astrid / van Delden, Johannes Jm

Journal of participatory medicine

2024 Volume 16, Page(s) e48573

Abstract: Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy ... ...

Abstract	Background: Person-centered care (PCC) encourages patients to actively participate in health care, thus facilitating care that fits the life of the patient. Therefore, health care professionals (HCPs) need to know the patient. As part of a broad policy for improving PCC, a digital questionnaire ("We would like to know you") consisting of 5 questions has previously been developed to help HCPs to get to know the patient with the help of patient and staff involvement. Objective: The purpose of this study was to provide insight into the content and aims of the questionnaire to understand its potential and usability. Methods: We conducted a qualitative, retrospective content analysis of patients' answers using NVivo Pro (QSR International). The questionnaire was used in the outpatient neuro-oncology department of a Dutch academic hospital. Results: Of 374 invited patients, 78 (20.9%) completed the questionnaire. We selected a sample of 42 (54%) of the 78 patients. Patients used a median of 16 (IQR 7-27) words per question, and most answers were easily interpretable. When asked about important activities, social activities, sports, or maintaining a normal life were most frequently mentioned. Patients wrote about fear of the disease, its possible influence on life, or fear of the future in general. Patients wanted HCPs to know about their care and communication preferences or shared personal information. They formulated expectations about effective treatment, communication, and the care process. Conclusions: The questionnaire seems usable because patients provide interpretable answers that take little time to read, which HCPs can use to personalize care. Our study shows the potential of the questionnaire to help deliver PCC.
Language	English
Publishing date	2024-03-04
Publishing country	Canada
Document type	Journal Article
ZDB-ID	2573853-7
ISSN	2152-7202 ; 2152-7202
ISSN (online)	2152-7202
ISSN	2152-7202
DOI	10.2196/48573
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Article ; Online: In the footstep of the old patient from hospital to home: A qualitative field observation study.

Beck, Sanne Have / Eilertsen, Grethe / Andersen-Ranberg, Karen / Janssens, Astrid / Nielsen, Dorthe Susanne

Scandinavian journal of caring sciences

2024

Abstract: Background: Older people often have multiple health conditions and therefore extended care needs. The transition from the hospital back to their home requires careful planning. The fragmented healthcare system and rapid discharge from the hospital can ... ...

Abstract	Background: Older people often have multiple health conditions and therefore extended care needs. The transition from the hospital back to their home requires careful planning. The fragmented healthcare system and rapid discharge from the hospital can result in limited involvement of the older patient in the discharge planning process. We aimed to explore how older hospitalised patients experienced the transition from hospital to home and how possibilities and constraints in interactions with relevant parties in the transition affected their everyday lives. Method: An ethnographic participant observation study including interviews was conducted with 10 older hospitalised patients. The theoretical perspective in the study is critical psychology and data were analysed using the condition-, meaning- and reasoning analysis. Results: Three themes were identified: (1) Lost in transition - the person's ability to act is limited, (2) In transition - the relatives become important, (3) At home - the home transforms into a workplace. Conclusion: Lack of involvement becomes a condition for older patients as some struggle to create meaning in their transition, affecting their everyday lives. The patients experienced their relatives as important as they ensured that the HCPs got to know their values and wishes. This knowledge is important for HCPs working closely with older people both at the hospital and at home ensuring active involvement of the older person with respect and acknowledgement of the older person's wishes, needs, resources and vulnerability.
Language	English
Publishing date	2024-04-12
Publishing country	Sweden
Document type	Journal Article
ZDB-ID	639217-9
ISSN	1471-6712 ; 0283-9318
ISSN (online)	1471-6712
ISSN	0283-9318
DOI	10.1111/scs.13257
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Article ; Online: Non-participation in a health examination survey in a rural-provincial area of Denmark - results from the Lolland-Falster Health Study (LOFUS).

Lyngsøe, Signe / Lophaven, Søren / Jepsen, Randi / Holmager, Therese / Janssens, Astrid / Lynge, Elsebeth

Scandinavian journal of public health

2023 , Page(s) 14034948231206879

Language	English
Publishing date	2023-11-13
Publishing country	Sweden
Document type	Journal Article
ZDB-ID	1475054-5
ISSN	1651-1905 ; 1403-4948
ISSN (online)	1651-1905
ISSN	1403-4948
DOI	10.1177/14034948231206879
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Article ; Online: The association between objectively measured physical activity and the prevalence of comorbidities in lung transplant recipients.

Breuls, Sofie / Blondeel, Astrid / Wuyts, Marieke / Verleden, Geert M / Vos, Robin / Janssens, Wim / Troosters, Thierry / Demeyer, Heleen

Respiration; international review of thoracic diseases

2024

Abstract: Introduction Lung transplant recipients are often physically inactive and are at risk of developing comorbidities. We investigated whether objectively measured physical activity was associated with the prevalence of comorbidities. Methods Physical ... ...

Abstract	Introduction Lung transplant recipients are often physically inactive and are at risk of developing comorbidities. We investigated whether objectively measured physical activity was associated with the prevalence of comorbidities. Methods Physical activity (accelerometry) and the presence of cardiovascular disease, symptoms of depression and anxiety, diabetes, dyslipidaemia, hypertension, lower extremity artery disease, muscle weakness, obesity and osteoporosis were assessed in 108 lung transplant recipients. Patients were divided into four groups based on daily step count. Results A cohort of 108 patients (60±7 years, 51% male, 20±14 months since transplantation) was included. Active patients (>7500 steps/day) had significantly fewer comorbidities (4 comorbidities) compared to severely inactive patients (<2500 steps/day, 6 comorbidities) and muscle weakness and high symptoms of depression were less prevalent. Severely inactive patients had significantly more cardiovascular comorbidities compared to all other groups. No other significant differences were observed. Conclusion Physically active lung transplant recipients have fewer comorbidities, lower prevalence of muscle weakness and fewer symptoms of depression compared to very inactive patients.
Language	English
Publishing date	2024-03-06
Publishing country	Switzerland
Document type	News
ZDB-ID	206674-9
ISSN	1423-0356 ; 0025-7931
ISSN (online)	1423-0356
ISSN	0025-7931
DOI	10.1159/000536607
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Article ; Online: Parenting roles for young people with attention-deficit/hyperactivity disorder transitioning to adult services.

Janssens, Astrid / Blake, Sharon / Eke, Helen / Price, Anna / Ford, Tamsin

Developmental medicine and child neurology

2022 Volume 65, Issue 1, Page(s) 136–144

Abstract: Aim: To inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention-deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old.: Method: Using framework thematic ... ...

Abstract	Aim: To inform transitions from child to adult health services, we explored the work and roles parents take in the care of young people with attention-deficit/hyperactivity disorder (ADHD) aged 14 to 25 years old. Method: Using framework thematic analysis, we analysed data collected from 28 semi-structured interviews with parents of young people with ADHD to generate a typology and triangulated it against findings from 64 interviews with young people with ADHD. The interviews were carried out as part of a three-strand, interactive mixed-method study. Results: An entourage typology of three parent roles was identified. Parents moved between 'manager' and 'roadie' roles as their child gradually matured. A 'superfan' role was identified which supported young people's positive self-image but may impede withdrawal from the 'manager' role. Continued parental involvement into adulthood reflected a need to maintain the balance of resources required to maintain quality of life for the whole family. Interpretation: This is the first study to explore parental roles in the health care of young people with ADHD. Parents will vary in their capacity to fulfil the identified roles and step back their care as their children reach adulthood. The findings can inform intervention development to support families and transition between services. What this paper adds: Parents move from a 'manager' to 'roadie' role as young people mature. A 'superfan' role supports positive self-image and directed health care work. Continued involvement reflects parental responsibility to juggle wider family needs and resources. Parents differ in capacity to fulfil and move between these roles.
MeSH term(s)	Adult ; Child ; Humans ; Adolescent ; Young Adult ; Attention Deficit Disorder with Hyperactivity/therapy ; Parenting ; Quality of Life ; Parents ; Health Services
Language	English
Publishing date	2022-06-20
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	80369-8
ISSN	1469-8749 ; 0012-1622
ISSN (online)	1469-8749
ISSN	0012-1622
DOI	10.1111/dmcn.15320
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Article ; Online: Differentiation and Non-Linear Responses in Temporal Phenotypic Plasticity of Seasonal Phenophases in a Common Garden of Crataegus monogyna Jacq.

Kristine Vander Mijnsbrugge / Astrid Janssens

Forests, Vol 10, Iss 4, p

2019 Volume 293

Abstract: 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 ... ...

Abstract	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.
Keywords	phenology ; leafing out ; flowering ; senescence ; cumulative logistic regression ; hawthorn ; provenance trial ; non-local populations ; variance analysis ; Plant ecology ; QK900-989
Subject code	580
Language	English
Publishing date	2019-03-01T00:00:00Z
Publisher	MDPI AG
Document type	Article ; Online
Database	BASE - Bielefeld Academic Search Engine (life sciences selection)

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Article ; Online: Adverse events as transitional markers - Using liminality to understand experiences of second victims.

Schrøder, Katja / Janssens, Astrid / Hvidt, Elisabeth Assing

Social science & medicine (1982)

2020 Volume 268, Page(s) 113598

Abstract: Healthcare professionals are socialized into a tacit, professional identity of competences and skills - to save lives, repair trauma and facilitate good and trustful relational care. When severe adverse events happen, healthcare professionals may ... ...

Abstract	Healthcare professionals are socialized into a tacit, professional identity of competences and skills - to save lives, repair trauma and facilitate good and trustful relational care. When severe adverse events happen, healthcare professionals may struggle to accept their own fallibility, and the event may pose a threat to the selfdeclared 'superior' or 'infallible' professional identity. The consequences of a sudden identity shift between the 'potentially infallible HCP' and 'potentially fallible HC P' caused by an adverse event is the analytical object of this study. The aim of the paper is to derive new understandings of how HCPs in maternity services experience adverse events by using Arnold van Gennep's and Victor Turner's 'rites of passage' theorizations and the concept of liminality to explain the process of transition between the two professional identities. Through five focus groups conducted in June 2018 with midwives and obstetricians-gynecologists, we have examined i) how second victim experiences can be understood using theories of transition and liminality, and ii) how the organizational procedures in a Danish university hospital may serve as a ritual for the involved HCPs in the aftermath of adverse events. The findings suggest that the inconsistency in the level of support contributes to the chaos that may be experienced by the healthcare professional. The organizational structure does not provide rites of transition or any other ritual processes, except for debriefings that, in many cases, are experienced as deficient. Since liminal states suggest danger and threat, because the previous professional identity is replaced by ambiguity and separation, the lack of clear rituals and support may put further strain on the HCP adding to the associated psychological and social distress. Considering the liminality and the need for structured transition rites within the work environment may prove useful when constructing adequate second victim support programs.
MeSH term(s)	Ceremonial Behavior ; Female ; Health Personnel ; Humans ; Midwifery ; Pregnancy
Language	English
Publishing date	2020-12-09
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	4766-1
ISSN	1873-5347 ; 0037-7856 ; 0277-9536
ISSN (online)	1873-5347
ISSN	0037-7856 ; 0277-9536
DOI	10.1016/j.socscimed.2020.113598
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Article ; Online: Why young people stop taking their attention deficit hyperactivity disorder medication: A thematic analysis of interviews with young people.

Titheradge, Daniel / Godfrey, Jo / Eke, Helen / Price, Anna / Ford, Tamsin / Janssens, Astrid

Child: care, health and development

2022 Volume 48, Issue 5, Page(s) 724–735

Abstract: Background: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. ...

Abstract	Background: Attention deficit hyperactivity disorder (ADHD) is a common neurodevelopmental disorder that can persist into adulthood. Young people often stop taking ADHD medication during adolescence despite evidence that continuation would be beneficial. Increasingly, young people are restarting medication in early adulthood suggesting that cessation was premature. In this paper we explore the reasons given by young people for discontinuing ADHD medication. Methods: Qualitative data from the Children and Adolescents with ADHD in Transition between Children's and Adult Services (CATCh-uS) project was analysed to look for reasons for stopping medication. Semi-structured interviews with three groups of young people were analysed using thematic and framework analysis; this included young people prior to transition (n = 21); young people that had successfully transitioned to adult services (n = 22); and young people who left children's services prior to transition but re-entered adult services later (n = 21). Results: Reasons given by young people for stopping ADHD medication included the following: the perceived balance between benefits and adverse effects of medication; perceptions of ADHD as a childhood or educational disorder; life circumstance of the young person and challenges young people faced in accessing services. Conclusions: A multidimensional approach is needed to address discontinuation of ADHD medication in order to improve the long-term prospects and quality of life for these young people. Possible approaches include access to non-pharmacological treatments and improved psychoeducation. As many reasons given by young people are not unique to ADHD, these findings are also of relevance to medication adherence in other chronic childhood conditions.
MeSH term(s)	Adolescent ; Adult ; Attention Deficit Disorder with Hyperactivity/drug therapy ; Child ; Humans ; Medication Adherence ; Quality of Life
Language	English
Publishing date	2022-02-20
Publishing country	England
Document type	Journal Article ; Research Support, Non-U.S. Gov't
ZDB-ID	223039-2
ISSN	1365-2214 ; 0305-1862
ISSN (online)	1365-2214
ISSN	0305-1862
DOI	10.1111/cch.12978
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