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Patient perspectives on the usability and content validity of the assessment of burden of chronic conditions tool for post-COVID in the Netherlands: a qualitative study

Background

Post-COVID syndrome manifests with a diverse array of symptoms for which no standard care plan currently exists. Many questions were raised by patients, which underscored the need for a validated patient-reported outcome measure (PROM). Therefore, a post-COVID module was developed to be included in the Assessment of Burden of Chronic Conditions (ABCC-) tool. The ABCC-tool evaluates and visualises the perceived physical, emotional and social burden of one or multiple chronic disease(s) using a balloon diagram and aims to facilitate person-centred care and structured discussions between patients and healthcare professionals. This study explores the patients’ perspective on the content of the ABCC-tool for post-COVID and the tool’s usability in a home-based setting.

Methods

All patients who completed the ABCC-tool for post-COVID were invited for an online semi-structured interview. We selected post-COVID patients who had used the tool in the past three months. Interviews were audio recorded and analysed using a thematic approach with Atlas.ti version 23.

Results

Nineteen post-COVID patients (10 males, mean age 56) were interviewed between May and August 2024. The tool was regarded as user-friendly, and patients indicated they would use the tool again in the future. Patients valued the tool’s broad range of topics, some of which are often overlooked in standard healthcare consultations. The tool was comprehensible and relevant according to all patients. The balloon diagram was easy to understand, but a legend explaining the colours of the balloons was preferred. Other suggestions for improvement included adding open-text fields and periodic reminders to increase usability and adding long-term data.

Conclusions

The ABCC-tool is a promising instrument for post-COVID patients, offering a structured way to monitor and communicate experienced burden in addition to standard healthcare consultations. Refinements addressing usability and comprehensiveness are recommended to facilitate its integration into clinical practices.

Becoming fathers, becoming caregivers: A qualitative exploration of intersectional influences shaping caregiving in an urban poor South Indian setting

by Eunice Lobo, Joshua Jeong, Giridhara Rathnaiah Babu, Debarati Mukherjee, Onno C. P. van Schayck, Prashanth Nuggehalli Srinivas

Background

Caregiver engagement is crucial for early child development; however, research on paternal involvement remains limited, particularly in urban settings of the Global South. This exploratory study aimed to understand how fathers’ lived experiences and aspirations, along with systemic inequities, shape their parenting practices in urban poor settings in Bangalore, South India.

Methods

Ten fathers of children aged 4–6 years from low socio-economic backgrounds in the MAASTHI birth cohort were purposively selected for in-depth interviews, conducted using a pre-tested topic guide in Hindi and Kannada. All interviews were transcribed, translated, and analysed using a thematic analysis approach.

Results

Fathers prioritized their children’s education and safety, often viewing financial provision as their primary role due to ingrained gender norms and economic hardship. Most worked long hours in informal employment, thereby limiting their participation in daily caregiving, which was typically handled by their mothers. Fathers’ own childhood experiences influenced their parenting, with those who experienced adversity often aiming to break intergenerational cycles by being more emotionally present and supportive. While structural barriers limited involvement, many fathers expressed a strong desire to be more engaged, thereby challenging traditional roles. Safety concerns in their neighbourhoods further shaped protective parenting practices. Despite these constraints, some fathers reported that they preferred spending time with their families and participated in co-parenting through shared decision-making and engaging in play.

Conclusion

This study highlights the intersectionality between gender, socio-economic status, and intergenerational adversity in shaping fathering practices. To promote inclusive caregiving, early childhood programmes must actively include fathers and address both individual and structural barriers that constrain their involvement.

How can post-COVID care be improved using patient experiences with received care and perceived health? A qualitative study of focus groups with 30 patients having post-COVID in the Netherlands

Por: Gruiskens · J. · Gidding-Slok · A. H. · van Meulenbroek · T. · Huijnen · I. · Muris · J. W. M. · Verbunt · J. · van Schayck · O. C. · Burgers · J. S.
Objectives

To provide bottom-up guidance on improving post-COVID care using patients’ experiences with received care and their perceived health

Design

Qualitative study design using focus group interviews

Participants

30 patients with post-COVID condition recruited through purposive sampling based on patient complexity and diversity

Results

Three dimensions for potential improvements of post-COVID care were identified: (1) building, supporting and maintaining patient resilience, (2) redesigning healthcare pathways to meet patient needs and (3) embedding post-COVID care in health systems and organisations. A conceptual framework that could guide improvements in post-COVID care was developed.

Conclusion

This study revealed several opportunities for improving and implementing post-COVID care following a person-centred approach in multidisciplinary integrated care pathways with an integrative vision of health.

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