Background: Measures against COVID-19 in nursing homes affected not only clients but also staff. However, staff perspectives on the importance of these measures remain underexplored. Objective: To... Show moreBackground: Measures against COVID-19 in nursing homes affected not only clients but also staff. However, staff perspectives on the importance of these measures remain underexplored. Objective: To investigate measures related to staff during the COVID-19 pandemic, staff perspectives of important measures and the involvement of staff in deciding on these measures. Design: A qualitative study. Setting(s): We analysed minutes of nursing home outbreak teams in the Netherlands and conducted group meetings with Dutch nursing home staff in different positions, prioritizing measures and discussing staff' involvement in deciding on the measures. Participants were recruited purposefully. Participants: The minutes of 41 nursing home organizations were collected during March-November, 2020. Four group meetings were organized in the same period, each with 5 to 7 participants, resulting in 23 participants. Methods: The meeting minutes were analysed using qualitative content analysis, whereas reflexive thematic analysis was used for the group meeting data. The group meetings were conducted online and structured by the Nominal Group Technique to discuss the importance of measures for staff. Results: Measures implemented for staff focused on prevention of COVID-19 transmission, (suspension of) educational activities, testing, additional tasks and staffing capacity, promoting wellbeing, and other means of support. The implemented measures overlapped with the measures considered important by staff. In addition, staff considered measures on decision-making support and communication to be important. Staff prioritized the measures in the group meetings because they affected their well-being, workforce scheduling, decision-making, or infection prevention. Furthermore, the group meetings revealed that decision-making shifted from mainly implementing national measures to more context-adjusted decision-making in the staff's or clients' situations. Conclusions: We showed that although nursing home staff were not always involved in decisionmaking during the first COVID-19 wave, there was overlap between the measures implemented by the organizations and measures considered important by staff. We suggest that organizations Show less
Mertens, J.F.; Kempen, T.G.H.; Koster, E.S.; Deneer, V.H.M.; Bouvy, M.L.; Gelder, T. van 2024
Background: Pharmacists' clinical decision-making is a core process in pharmaceutical care. However, the practical aspects and effective teaching methods of this process remain largely unexplored.... Show moreBackground: Pharmacists' clinical decision-making is a core process in pharmaceutical care. However, the practical aspects and effective teaching methods of this process remain largely unexplored. Objective: To examine the cognitive processes involved in pharmacists' perceptions of how they make clinical decisions in pharmacy practice. Methods: Semi-structured, face-to-face interviews were conducted with pharmacists working in community, outpatient, and hospital care in the Netherlands between August and December 2021. Participants were explicitly asked for examples when asked how they make clinical decisions in practice and how they teach this to others. After transcribing audio-recorded interviews, an inductive thematic analysis was conducted to identify cognitive processes. A theoretical model of clinical decision-making was then used and adapted to structure the identified processes. Results: In total, 21 cognitive processes were identified from interviews with 16 pharmacists working in community (n = 5), outpatient (n = 2), and hospital care (n = 9). These cognitive processes were organized into 8 steps of the adapted theoretical model, i.e. problem and demand for care consideration, information collection, clinical reasoning, clinical judgment, shared decision-making, implementation, outcomes evaluation, and reflection. Pharmacists struggled to articulate their clinical decision-making and went back-and-forth in their explanations of this process. All pharmacists emphasized the importance of identifying the problem and described how they collect information through reviewing, gathering, recalling, and investigating. Clinical reasoning entailed various cognitive processes, of which comprehending the problem in the patient's context was deemed challenging at times. Pharmacists seemed least active in evaluating patient outcomes and reflecting on these outcomes. Conclusions: Pharmacists use multiple cognitive processes when making clinical decisions in pharmacy practice, and their back-and-forth explanations emphasize its dynamic nature. This study adds to a greater understanding of how pharmacists make clinical decisions and to the development of a theoretical model that describes this process, which can be used in pharmacy practice and education. Show less
Bansema, C.H.; Vermeiren, R.R.J.M.; Nijland, L.; Soet, R. de; Roeleveld, J.; Ewijk, H. van; Nooteboom, L.A. 2023
A group of youth with severe and enduring mental health problems (SEMHP) falls between the cracks of the child-and-adolescent psychiatry (CAP) system. An insufficient understanding of these youth's... Show moreA group of youth with severe and enduring mental health problems (SEMHP) falls between the cracks of the child-and-adolescent psychiatry (CAP) system. An insufficient understanding of these youth's mental health problems results in a failure to accurately identify and provide support to these youth. To gain a deeper understanding, the aim of this study is to explore characteristics of youth with SEMHP in clinical practice based on the experiences of youth and clinicians in CAP. This qualitative study consisted of 20 semi-structured interviews with 10 youth with lived experience and 10 specialized clinicians in CAP. Both a thematic and content analysis was conducted to identify, assess, and report themes associated with youth with SEMHP. Themes were individual characteristics such as trauma, masking, self-destructive behavior, interpersonal distrust as well as environmental and systematic characteristics including parental stressors, social isolation and societal stressors, which go beyond the existing classifications. These characteristics profoundly impact youth's daily functioning across various life domains, creating an interactive process, ultimately leading to elusive mental health problems and overwhelming feelings of hopelessness. The authors recommend proper assessment of characteristics in all life domains affected and their perpetuating effect on SEMHP during diagnostics in CAP. Engaging in a dialogue with youth themselves is crucial due to the nature of youth's characteristics, which frequently transcend traditional classifications and may not be immediately discernible. It also requires an integrated care approach, entailing collaborations between educational institutions and mental healthcare providers, and attention to potential indicators of deficits in the healthcare system and society. Show less
Boer, A. de; Proost, L. de; Vries, M. de; Hogeveen, M.; Verweij, E.J.T.; Geurtzen, R. 2023
ObjectiveA shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience... Show moreObjectiveA shared decision-making (SDM) approach is recommended for prenatal decisions at the limit of viability, with a guiding role for parental values. People born extremely premature experience the consequences of the decision made, but information about their perspectives on prenatal decisions is lacking. Therefore, this study aims to describe their perspectives on what is important in decision-making at the limit of viability.DesignSemi-structured focus group discussions were conducted, recorded and transcribed verbatim. The data were independently analysed by two researchers in Atlas.ti.ResultsFour focus groups were conducted in the Netherlands, with five to six participants each, born between 240/7 and 300/7 weeks gestation in the period between 1965 and 2002. Considering their personal life experiences and how their extremely premature birth affected their families, the participants reflected on decision-making at the limit of viability. Various considerations were discussed and summarised into the following themes: anticipated parental regret, the wish to look at the baby directly after birth, to give the infant a chance at survival, quality of life, long-term outcomes for the infant and the family, and religious or spiritual considerations.ConclusionsInsights into the perspectives of adults born extremely premature deepened our understanding of values considered in decision-making at the limit of viability. Results point out the need for a more individualised prediction of the prognosis and more extensive information on the lifelong impact of an extremely premature birth on both the infant and the family. This could help future parents and healthcare professionals in value-laden decision-making. Show less
Soet, R. de; Nooteboom, L.A.; Bansema, C.H.; Ewijk, H. van; Nijland, L.; Vermeiren, R.R.J.M. 2023
Youth with severe and enduring mental health problems (SEMHP) do not profit from regular child and adolescent psychiatric (CAP) treatment. Their changing and complex problems cause enormous... Show moreYouth with severe and enduring mental health problems (SEMHP) do not profit from regular child and adolescent psychiatric (CAP) treatment. Their changing and complex problems cause enormous suffering. To understand why these youth inadequately profit from CAP treatment, this qualitative study aimed to examine the experiences of youth with SEMHP, practitioners, and caregivers to identity barriers and facilitators in treatment. We conducted 31 semi-structured interviews with youth (n = 10), practitioners (n = 10), and caregivers of youth with SEMHP (n = 11). A thematic analysis was performed both deductively and inductively, and the perspectives of participants were compared. Results showed barriers and facilitators in five categories: before treatment, engagement and accountability, trust-based treatment, organization of care, and hopelessness. To restore epistemic trust, a shift from a risk-avoidance approach towards trust-based relationships in treatment is required. Additionally, organizing continuous and tailored care can prevent youth from slipping through the cracks of waiting lists and receiving inadequate treatment. Show less
Deursen, L. van; Aardoom, J.J.; Alblas, E.E.; Struijs, J.N.; Chavannes, N.H.; Vaart, R. van der 2023
PurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC... Show morePurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC care delivery.MethodsThree semi-structured focus groups were held with sixteen CRC survivors. To initiate the discussion, an online registration form and two vignettes were used. The data was analyzed using the framework method.ResultsBased on survivors' experiences, five themes were identified as opportunities for improving CRC care delivery. These themes include better recognition of complaints and faster referrals, more information as part of the care delivery, more guidance and monitoring of health outcomes, more collaboration between practitioners, and more attention for partners and relatives. In addition, survivors expressed opportunities for using e-health to facilitate information provision, improve communication, and monitor survivors' health conditions.ConclusionSeveral suggestions for improvement of CRC care delivery were identified. These often translated into possibilities for e-health to support or improve CRC care delivery. The ideas of survivors align with the vast array of existing e-health resources that can be utilized to enhance CRC care delivery. Therefore, the next step involves addressing the implementation gap between the needs of stakeholders, such as CRC survivors and healthcare providers, and the e-health tools currently available in clinical practice. Show less
Mertens, J.F.; Koster, E.S.; Deneer, V.H.M.; Bouvy, M.L.; Gelder, T. van 2023
BackgroundPharmacists’ clinical decision-making is considered a core process of pharmaceutical care in pharmacy practice, but little is known about the factors influencing this process.ObjectiveTo... Show moreBackgroundPharmacists’ clinical decision-making is considered a core process of pharmaceutical care in pharmacy practice, but little is known about the factors influencing this process.ObjectiveTo identify factors influencing clinical decision-making among pharmacists working in pharmacy practice.MethodsSemi-structured interviews were conducted with pharmacists working in primary, secondary, and tertiary care settings in the Netherlands between August and December 2021. A thematic analysis was conducted using an inductive approach. The emerged themes were categorized into the Capability–Opportunity-Motivation–Behaviour (COM-B) model domains.ResultsIn total, 16 pharmacists working in primary care (n = 7), secondary care (n = 4) or tertiary care (n = 5) were interviewed. Factors influencing pharmacists' capability to make clinical decisions are a broad theoretical knowledge base, clinical experience, and skills, including contextualizing data, clinical reasoning, and clinical judgment. The pharmacy setting, data availability, rules and regulations, intra- and interprofessional collaboration, education, patient perspectives, and time are mentioned as factors influencing their opportunity. Factors influencing pharmacists’ motivation are confidence, curiosity, critical thinking, and responsibility.ConclusionsThe reported factors covered all domains of the COM-B model, implying that clinical decision-making is influenced by a combination of pharmacists' capability, opportunity, and motivation. Addressing these different factors in pharmacy practice and education may improve pharmacists’ clinical decision-making, thereby improving patient outcomes. Show less
Deursen, L. van; Aardoom, J.J.; Alblas, E.E.; Struijs, J.N.; Chavannes, N.H.; Vaart, R. van der 2023
PurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC... Show morePurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC care delivery.MethodsThree semi-structured focus groups were held with sixteen CRC survivors. To initiate the discussion, an online registration form and two vignettes were used. The data was analyzed using the framework method.ResultsBased on survivors’ experiences, five themes were identified as opportunities for improving CRC care delivery. These themes include better recognition of complaints and faster referrals, more information as part of the care delivery, more guidance and monitoring of health outcomes, more collaboration between practitioners, and more attention for partners and relatives. In addition, survivors expressed opportunities for using e-health to facilitate information provision, improve communication, and monitor survivors’ health conditions.ConclusionSeveral suggestions for improvement of CRC care delivery were identified. These often translated into possibilities for e-health to support or improve CRC care delivery. The ideas of survivors align with the vast array of existing e-health resources that can be utilized to enhance CRC care delivery. Therefore, the next step involves addressing the implementation gap between the needs of stakeholders, such as CRC survivors and healthcare providers, and the e-health tools currently available in clinical practice. Show less
Deursen, L. van; Aardoom, J.J.; Alblas, E.E.; Struijs, J.N.; Chavannes, N.H.; Vaart, R. van der 2023
PurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC... Show morePurposeThe purpose of this study was to gather insights from colorectal cancer (CRC) survivors on how to improve care for CRC survivors and how e-health technology could be utilized to improve CRC care delivery.MethodsThree semi-structured focus groups were held with sixteen CRC survivors. To initiate the discussion, an online registration form and two vignettes were used. The data was analyzed using the framework method.ResultsBased on survivors’ experiences, five themes were identified as opportunities for improving CRC care delivery. These themes include better recognition of complaints and faster referrals, more information as part of the care delivery, more guidance and monitoring of health outcomes, more collaboration between practitioners, and more attention for partners and relatives. In addition, survivors expressed opportunities for using e-health to facilitate information provision, improve communication, and monitor survivors’ health conditions.ConclusionSeveral suggestions for improvement of CRC care delivery were identified. These often translated into possibilities for e-health to support or improve CRC care delivery. The ideas of survivors align with the vast array of existing e-health resources that can be utilized to enhance CRC care delivery. Therefore, the next step involves addressing the implementation gap between the needs of stakeholders, such as CRC survivors and healthcare providers, and the e-health tools currently available in clinical practice. Show less
BackgroundKetamine and its enantiomers are widely researched and increasingly used to treat mental disorders, especially treatment-resistant depression. The phenomenology of ketamine-induced... Show moreBackgroundKetamine and its enantiomers are widely researched and increasingly used to treat mental disorders, especially treatment-resistant depression. The phenomenology of ketamine-induced experiences and their relation to its psychotherapeutic potential have not yet been systematically investigated.AimsTo describe the phenomenology of patient experiences during oral esketamine treatment for treatment-resistant depression (TRD) and to explore the potential therapeutic relevance of these experiences.MethodsIn-depth interviews were conducted with 17 patients after a 6-week, twice-weekly ‘off label’ generic oral esketamine (0.5–3.0mg/kg) treatment program. Interviews explored participants’ perspectives, expectations, and experiences with oral esketamine treatment. Audio interviews were transcribed and analyzed using an Interpretative Phenomenological Analysis (IPA) framework.ResultsThe effects of ketamine were highly variable, and psychological distress was common in most patients. Key themes included (a) perceptual effects (auditory, visual, proprioceptive), (b) detachment (from body, self, emotions, and the world), (c) stillness and openness, (d) mystical-type effects (transcendence, relativeness, spirituality), and (e) fear and anxiety. Key themes related to post-session reports included (a) feeling hungover and fatigued, and (b) lifting the blanket: neutralizing mood effects.ConclusionPatients reported several esketamine effects with psychotherapeutic potential, such as increased openness, detachment, an interruption of negativity, and mystical-type experiences. These experiences deserve to be explored further to enhance treatment outcomes in patients with TRD. Given the frequency and severity of the perceived distress, we identify a need for additional support in all stages of esketamine treatment. Show less
Akkermans, A.; Prins, S.; Spijkers, A.S.; Wagemans, J.; Labrie, N.H.M.; Willems, D.L.; ... ; Vos, M.A. de 2023
PurposeIn intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open... Show morePurposeIn intensive care units (ICUs), decisions about the continuation or discontinuation of life-sustaining treatment (LST) are made on a daily basis. Professional guidelines recommend an open exchange of standpoints and underlying arguments between doctors and families to arrive at the most appropriate decision. Yet, it is still largely unknown how doctors and families argue in real-life conversations. This study aimed to (1) identify which arguments doctors and families use in support of standpoints to continue or discontinue LST, (2) investigate how doctors and families structure their arguments, and (3) explore how their argumentative practices unfold during conversations.MethodA qualitative inductive thematic analysis of 101 audio-recorded conversations between doctors and families.ResultsSeventy-one doctors and the families of 36 patients from the neonatal, pediatric, and adult ICU (respectively, N-ICU, P-ICU, and A-ICU) of a large university-based hospital participated. In almost all conversations, doctors were the first to argue and families followed, thereby either countering the doctor's line of argumentation or substantiating it. Arguments put forward by doctors and families fell under one of ten main types. The types of arguments presented by families largely overlapped with those presented by doctors. A real exchange of arguments occurred in a minority of conversations and was generally quite brief in the sense that not all possible arguments were presented and then discussed together.ConclusionThis study offers a detailed insight in the argumentation practices of doctors and families, which can help doctors to have a sharper eye for the arguments put forward by doctors and families and to offer room for true deliberation. Show less
The high standard of Dutch hemophilia care and the availability of prophylaxis provide an opportunity to focus on health outcomes beyond mortality. Using both qualitative and quantitative methods,... Show moreThe high standard of Dutch hemophilia care and the availability of prophylaxis provide an opportunity to focus on health outcomes beyond mortality. Using both qualitative and quantitative methods, this thesis defined, measured and quantified relevant health outcomes for persons with hemophilia. In the first part of this thesis we showed that communication and information provision about treatment options and prophylaxis regimes may support persons with hemophilia in their decisions about current and future treatment products. This will likely result in improved bleeding outcomes. In the second part, we took the first steps towards value-based health care for hemophilia by defining a standard set of ten relevant health outcomes, including instruments to measure these outcomes. Routine measurement of the standard set may be implemented in clinical practice in order to further improve hemophilia care that adds value for patients. Already, the high standard of care has resulted in near-normal socio-economic participation of Dutch persons with hemophilia. Development of more sophisticated data collection tools will help to monitor relevant health outcomes over time. Show less
Background: The prognosis for underweight individuals with an eating disorder (ED) and posttraumatic stress disorder (PTSD) is worse than for their peers without these comorbid symptoms. This... Show moreBackground: The prognosis for underweight individuals with an eating disorder (ED) and posttraumatic stress disorder (PTSD) is worse than for their peers without these comorbid symptoms. This qualitative study explores the experiences of trauma-focused Imagery Rescripting (ImRs) therapy of underweight inpatients being treated for an ED. Objective: To test the feasibility and to improve ImRs by understanding the experiences and perspectives of people with an ED and PTSD who, when underweight, received ImRs as an adjunct to their inpatient ED treatment. Method: To explore how underweight people with an ED experience and perceive ImRs, we used a qualitative study design involving semi-structured interviews with 12 participants. After analysis, the data were summarized and classified within a thematic framework that focused on experiences and improving the ImRs method. Results:The thematic analysis resulted in the following 6 main themes; (1) Expectations of ImRs; (2) Ability to participate in ImRs; (3) Effect of ImRs; (4) Experience of ImRs technique; (5) Conditions under which ImRs is given; (6) In depth-analysis. The results show that despite the fear of disappointment the participants appreciate addressing the PTSD and ED symptoms simultaneously. Further, results showed that it had been possible for them to attend ImRs but that the effects of ImRs were not uniformly perceived. Also, participants indicated that a caring context is important and that ImRs should not be scheduled immediately before a meal. Finally, the treatment generated hope. Conclusions: The findings of this study demonstrated the feasibility of the integration of ImRs trauma treatment for individuals who are being treated in an ED inpatient treatment setting, and are in contrast to standard practice where the focus of inpatient treatment has been ED-symptom improvement without comprehensively addressing past traumatic experiences during an underweight phase. Show less
Dijxhoorn, A.F.; Raijmakers, N.; Linden, Y. van der; Leget, C.; Brom, L. 2022
Objectives. Many aspects of palliative care, such as managing (complicated) symptoms, conductinggoals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians.Previous... Show moreObjectives. Many aspects of palliative care, such as managing (complicated) symptoms, conductinggoals-of-care conversations, and repeated exposure to loss, can be stressful to clinicians.Previous research on the emotional impact of providing palliative care was mainlydone in specialist settings. However, the majority of palliative care is provided by clinicianswho are not specialized in palliative care, and can be supported by palliative care specialistsonly when needed. Therefore, this study aimed to gain insight into the emotional impactof providing palliative care on clinicians, both palliative care generalists and specialists.Methods. A qualitative interview study among 21 clinicians (11 doctors and 10 nurses) workingin hospitals, home care, or nursing homes in the Netherlands was conducted. BetweenFebruary and June 2019, 13 palliative care generalists and 8 specialists were interviewed.Interviews were thematically analyzed by two researchers.Results. All clinicians considered the emotional impact of providing palliative care to be substantialand experienced both positive and negative aspects of providing palliative care. Severalaspects of providing palliative care can support or undermine emotional stability. These socalledfacilitators and barriers, such as practicing self-care and complexity of palliative care,were found at three different levels: individual, team, and organization.Significance of results. Although clinicians experience providing palliative care as meaningfuland valuable, the emotional impact is considerable. Negative and positive aspects often coexist.Further insight into the dynamics and magnitude of the emotional impact of providingpalliative care is needed in order to create a healthy working environment and develop adequateinterventions. Show less
Cardol, C.K.; Boslooper-Meulenbelt, K.; Middendorp, H. van; Meuleman, Y.; Evers, A.W.M.; Dijk, S. van 2022
Background Progression of chronic kidney disease (CKD) may be delayed if patients engage in healthy lifestyle behaviors. However, lifestyle adherence is very difficult and may be influenced by... Show moreBackground Progression of chronic kidney disease (CKD) may be delayed if patients engage in healthy lifestyle behaviors. However, lifestyle adherence is very difficult and may be influenced by problems in psychosocial functioning. This qualitative study was performed to gain insights into psychosocial barriers and facilitators for lifestyle adherence among patients with CKD not receiving dialysis. Methods Eight semi-structured focus groups were conducted with a purposive sample of 24 patients and 23 health care professionals from four Dutch medical centers. Transcripts were analyzed using thematic analysis. Subsequently, the codes from the inductive analysis were deductively mapped onto the Theoretical Domains Framework (TDF). Results Many psychosocial barriers and facilitators for engagement in a healthy lifestyle were brought forward, such as patients' knowledge and intrinsic motivation, emotional wellbeing and psychological distress, optimism, and disease acceptance. The findings of the inductive analysis matched all fourteen domains of the TDF. The most prominent domains were 'social influences''and 'environmental context and resources', reflecting how patients' environments hinder or support engagement in a healthy lifestyle. Conclusions The results indicate a need for tailored behavioral lifestyle interventions to support disease self-management. The TDF domains can guide development of adequate strategies to identify and target individually experienced psychosocial barriers and facilitators. Show less
In this thesis, we aimed to develop and validate a patient and a physician questionnaire to measure the shared decision making (SDM) process in oncology. We identified SDM measurement challenges:... Show moreIn this thesis, we aimed to develop and validate a patient and a physician questionnaire to measure the shared decision making (SDM) process in oncology. We identified SDM measurement challenges: there is limited evidence on measurement properties, patients’ role is not assessed while it is present in SDM models, patients and healthcare professionals have been involved only to a limited extent in the development of SDM measurement instruments, and a reflective measurement model is often assumed, while a formative might be more appropriate. The aim of this thesis was therefore to develop and validate questionnaires to assess the SDM process in oncology from both the patient and the physician viewpoints. We chose the oncology setting because it is a setting in which patients often face preference-sensitive decisions, and in which most patients prefer an active or collaborative role in treatment decision making. To inform the development and validation process of our questionnaires, we used the original Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist and we wrote two reviews: one on existing SDM measurement instruments and one on existing SDM models. The iSHARE questionnaires shows adequate measurement properties Show less
Introduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of... Show moreIntroduction: Informal caregivers often support nursing home residents with dementia in making therapeutic decisions. We explored the perceptions, needs and preferences of informal caregivers of nursing home residents with dementia regarding physical therapy.Method: We conducted eleven semi-structured interviews. Thematic analysis was used.Results: Five themes emerged: 1) visibility and familiarity; 2) communication; 3) aim and content; 4) dosage and location; 5) level of expertise and the role of the physical therapist within the interdisciplinary team. Informal caregivers' perceptions of physical therapy included a lack of visibility and familiarity. They needed more communication, and empathic communication skills of the physical therapists. Preferences included physical therapy to be enjoyable, accessible and tailored to the needs of the resident.Conclusion: Physical therapists need to involve informal caregivers in physical therapy care. Implementing shared decision-making will help to get informal caregivers more involved, but has yet to be studied in this setting. (C) 2022 Elsevier Inc. All rights reserved. Show less
Boer, M.C. den; Houtlosser, M.; Witlox, R.S.G.M.; Zanten, H.A. van; Vries, M.C. de; Pas, A.B. te 2022
Background: Obtaining ethically valid consent to participate in delivery room (DR) studies from parents facing an imminent premature birth can be challenging. This study aims to provide insight... Show moreBackground: Obtaining ethically valid consent to participate in delivery room (DR) studies from parents facing an imminent premature birth can be challenging. This study aims to provide insight into parental experiences with and perceptions of consent for DR studies. Methods: Semistructured interviews were conducted with parents of very and extreme preterm infants. Interviews were audio-recorded, transcribed, and analyzed using the qualitative data analysis software Atlas. ti V.8.4. Results: Twenty-five parents were interviewed. Despite being in an emotional and stressful situation, most parents considered being approached for DR studies as valuable. According to parents, this was mostly due to appropriate timing and communication, compassion, and investigators not being obtrusive. Interviewed parents generally decided to accept or decline study participation based on perceived risk. Parents differed widely in how risk of specific study interventions was perceived, but agreed on the fact that parental consent is needed for DR studies that involve risk. There was no consensus among parents on deferred consent for DR studies running at our NICU. However, parents considered deferred consent appropriate for observational studies. Furthermore, it became clear that parental misunderstanding of various aspects of DR studies, including aims, the concept of randomization, and risk associated with specific interventions, was common. Conclusions: Insight into parental perceptions of consent for DR studies allowed us to determine areas where the validity of parental consent can be improved. Further research on parental perspectives for consent for DR studies will allow us to establish consent procedures that are considered both valid and valuable. Show less
Background Reviews of qualitative studies allow for deeper understanding of concepts and findings beyond the single qualitative studies. Concerns on study reporting quality led to the publication... Show moreBackground Reviews of qualitative studies allow for deeper understanding of concepts and findings beyond the single qualitative studies. Concerns on study reporting quality led to the publication of the COREQ-guidelines for qualitative studies in 2007, followed by the ENTREQ-guidelines for qualitative reviews in 2012. The aim of this meta-review is to: 1) investigate the uptake of the COREQ- and ENTREQ- checklists in qualitative reviews; and 2) compare the quality of reporting of the primary qualitative studies included within these reviews prior- and post COREQ-publication. Methods Reviews were searched on 02-Sept-2020 and categorized as (1) COREQ- or (2) ENTREQ-using, (3) using both, or (4) non-COREQ/ENTREQ. Proportions of usage were calculated over time. COREQ-scores of the primary studies included in these reviews were compared prior- and post COREQ-publication using T-test with Bonferroni correction. Results 1.695 qualitative reviews were included (222 COREQ, 369 ENTREQ, 62 both COREQ/ENTREQ and 1.042 non-COREQ/ENTREQ), spanning 12 years (2007-2019) demonstrating an exponential publication rate. The uptake of the ENTREQ in reviews is higher than the COREQ (respectively 28% and 17%), and increases over time. COREQ-scores could be extracted from 139 reviews (including 2.775 appraisals). Reporting quality improved following the COREQ-publication with 13 of the 32 signalling questions showing improvement; the average total score increased from 15.15 to 17.74 (p-value < 0.001). Conclusion The number of qualitative reviews increased exponentially, but the uptake of the COREQ and ENTREQ was modest overall. Primary qualitative studies show a positive trend in reporting quality, which may have been facilitated by the publication of the COREQ. Show less
