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JMIR Formative Research

Background There is an emergence of mobile health (mHealth) interventions to support self-managem... more Background There is an emergence of mobile health (mHealth) interventions to support self-management in patients with chronic obstructive pulmonary disease (COPD). Recently, an evidence-driven mHealth intervention has been developed to support patients with COPD in exacerbation-related self-management: the Copilot app. Health care providers (HCPs) are important stakeholders as they are the ones who have to provide the app to patients, personalize the app, and review the app. It is, therefore, important to investigate at an early stage whether the app is feasible in the daily practice of the HCPs. Objective The aim of this study is to evaluate the perceived feasibility of the Copilot app in the daily practice of HCPs. Methods A multimethods design was used to investigate how HCPs experience working with the app and how they perceive the feasibility of the app in their daily practice. The feasibility areas described by Bowen et al were used for guidance. HCPs were observed while perfo...

This qualitative study aimed to explore the experienced influence of HIV on the quality of life (... more This qualitative study aimed to explore the experienced influence of HIV on the quality of life (QoL) of people living with HIV (PLHIV) and key populations who live without but are vulnerable to HIV in the Netherlands. We conducted and thematically analyzed interviews with 29 PLHIV and 13 participants from key populations without HIV (i.e., men who have sex with men). PLHIV and key populations shared positive meaningful experiences regarding HIV, i.e., feeling grateful for ART, life, and the availability of PrEP, being loved and supported in the light of HIV, and providing support to the community. Negative predominant experiences regarding HIV were described by both PLHIV and key populations as the negative effects of ART, challenges with regards to disclosing HIV, social stigmatization, and self-stigma. It remains important to support HIV community organizations in their efforts to reduce social stigmatization and to continue improving biomedical interventions for HIV.

Journal of Virus Eradication, 2022

Introduction When an HIV cure becomes available, it will have consequences for people living with... more Introduction When an HIV cure becomes available, it will have consequences for people living with HIV (PLHIV) and key populations who are vulnerable to HIV. This qualitative study aimed to explore the perceived impact of two HIV cure scenarios (post-treatment control when HIV is suppressed without the need for ongoing antiretroviral treatment (ART) and complete HIV elimination) on the quality of life of PLHIV and key populations living without HIV in the Netherlands. Methods Participants were purposefully sampled from the Amsterdam Cohort Studies, the AGEhIV Cohort Study, the outpatient clinic of the University Medical Centre Utrecht and the Dutch HIV Association to increase variability. Semi-structured in-depth interviews were conducted between October 2020 and March 2021 and thematically analysed. Results Of the 42 interviewed participants, 29 were PLHIV and 13 represented key populations (i.e., men who have sex with men and people injecting drugs). Both PLHIV and participants from vulnerable key populations hoped that a cure would result in normalization of their lives by removing the need to disclose HIV, reducing stigma and guilt, increasing independence of ART, and liberating sexual behaviour. Both groups believed only HIV elimination could accomplish this desired impact. Conclusions While the post-treatment control scenario seems a more plausible outcome of current HIV cure research, our findings highlight that participants may not perceive it as a true cure. Involvement of PLHIV and vulnerable key populations in devising acceptable and feasible experimental approaches to HIV cure is essential to ensure their future successful implementation.

A standard checklist for reporting qualitative research. (DOCX 35 kb)

Consolidated criteria for reporting qualitative studies (COREQ). 32-item consolidated criteria fo... more Consolidated criteria for reporting qualitative studies (COREQ). 32-item consolidated criteria for reporting qualitative studies (COREQ) (PDF 289â kb)

Checklist of criteria for good thematic analysis. 15-point checklist of criteria for good themati... more Checklist of criteria for good thematic analysis. 15-point checklist of criteria for good thematic analysis according to Braun and Clarke (PDF 303â kb)

Interview guide of the semi-structured interviews with nurses (PDF 184â kb)

Predictors and correlates o burden (SMD = −0.124, P = 0.001). Higher trust/satisfaction with the ... more Predictors and correlates o burden (SMD = −0.124, P = 0.001). Higher trust/satisfaction with the HIV care provider, a lower daily dosing frequency,

A description of the content of the psychosocial support program (DOCX 25 kb)

A checklist for the thematic analysis of qualitative data. (DOCX 33 kb)

The guidelines that were used for the interviews with caregivers. (DOCX 27 kb)

Cancer Medicine, 2020

This is an open access article under the terms of the Creative Commons Attribution License, which... more This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

BMC Psychology, 2019

Background: Partners are often the main caregivers in the care for patients with amyotrophic late... more Background: Partners are often the main caregivers in the care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing care during the progressive and fatal disease course of these patients is challenging and many caregivers experience feelings of distress. A blended psychosocial support program based on Acceptance and Commitment Therapy was developed to support partners of patients with ALS and PMA. The aim of this qualitative study is to gather insight into experiences with different components of the support program (program evaluation) and to discover what caregivers gained from following the program (mechanisms of impact). Methods: Individual in-depth interviews, about caregivers' experiences with the support program were conducted with 23 caregivers of ALS/PMA patients enrolled in a randomized controlled trial designed to measure the effectiveness of the blended psychosocial support program. The program, performed under the guidance of a psychologist, consists of psychoeducation, psychological and mindfulness exercises, practical tips and information, and options for peer contact. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. Results: The program evaluation showed that caregivers perceived each component of the program as beneficial but ambivalent reactions were expressed about the mindfulness exercises and peer contact functions. Caregivers expressed the need for a more personalized program with respect to the order and timing of the modules and wanted to continue the support program for a longer time. The main mechanism of impact of the program that caregivers reported was that they became more aware of their own situation. They further indicated that the program helped them to perceive control over the caregiving situation, to accept negative emotions and thoughts, to be there for their partner and feel acknowledged.

BMC Family Practice, 2018

Background: Self-management support is widely accepted for the management of chronic conditions. ... more Background: Self-management support is widely accepted for the management of chronic conditions. Selfmanagement often requires behaviour change in patients, in which primary care nurses play a pivotal role. To support patients in changing their behaviour, the structured behaviour change Activate intervention was developed. This intervention aims to enhance physical activity in patients at risk for cardiovascular disease in primary care as well as to enhance nurses' role in supporting these patients. This study aimed to evaluate nurses' perceptions towards the delivery and feasibility of the Activate intervention. Methods: A qualitative study nested within a cluster-randomised controlled trial using semistructured interviews was conducted and thematically analysed. Fourteen nurses who delivered the Activate intervention participated.

Journal of Advanced Nursing, 2017

People interested in the research are advised to contact the author for the final version of the ... more People interested in the research are advised to contact the author for the final version of the publication, or visit the DOI to the publisher's website. • The final author version and the galley proof are versions of the publication after peer review. • The final published version features the final layout of the paper including the volume, issue and page numbers. Link to publication General rights Copyright and moral rights for the publications made accessible in the public portal are retained by the authors and/or other copyright owners and it is a condition of accessing publications that users recognise and abide by the legal requirements associated with these rights. • Users may download and print one copy of any publication from the public portal for the purpose of private study or research. • You may not further distribute the material or use it for any profit-making activity or commercial gain • You may freely distribute the URL identifying the publication in the public portal. If the publication is distributed under the terms of Article 25fa of the Dutch Copyright Act, indicated by the "Taverne" license above, please follow below link for the End User Agreement:

Physiotherapy Theory and Practice, 2017

International Journal of Chronic Obstructive Pulmonary Disease, 2016

Background: In patients with COPD, self-management skills are important to reduce the impact of e... more Background: In patients with COPD, self-management skills are important to reduce the impact of exacerbations. However, both detection and adequate response to exacerbations appear to be difficult for some patients. Little is known about the underlying process of exacerbationrelated self-management. Therefore, the objective of this study was to identify and explain the underlying process of exacerbation-related self-management behavior. Methods: A qualitative study using semi-structured in-depth interviews was performed according to the grounded theory approach, following a cyclic process in which data collection and data analysis alternated. Fifteen patients (male n=8; age range 59-88 years) with mild to very severe COPD were recruited from primary and secondary care settings in the Netherlands, in 2015. Results: Several patterns in exacerbation-related self-management behavior were identified, and a conceptual model describing factors influencing exacerbation-related self-management was developed. Acceptance, knowledge, experiences with exacerbations, perceived severity of symptoms and social support were important factors influencing exacerbation-related selfmanagement. Specific factors influencing recognition of exacerbations were heterogeneity of exacerbations and habituation to symptoms. Feelings of fear, perceived influence on exacerbation course, patient beliefs, ambivalence toward treatment, trust in health care providers and self-empowerment were identified as specific factors influencing self-management actions. Conclusion: This study provided insight into factors influencing exacerbation-related selfmanagement behavior in COPD patients. The conceptual model can be used as a framework for health care professionals providing self-management support. In the development of future self-management interventions, factors influencing the process of exacerbation-related selfmanagement should be taken into account.