As countries adapted their disaster responses to the COVID-19 pandemic, South Africa responded with an alert-level risk approach based on epidemiological principles that impacted all societal levels. We explored the everyday experiences of people in Cape Town whose basic needs were met and who could report on the realities of the COVID-19 pandemic control. Gaining insight into their perspectives contributes to knowledge that can inform policies and practices for managing future public health crises.
Community-Based Participatory Research principles guided the design and a series of facilitated dialogues with 18 research participants. The thematic analysis was deepened through two colloquiums with members of an overarching research consortium and a participant reflection workshop.
The pandemic impacted individuals, their interpersonal relationships, workplaces and communities, leading to societal processes such as stigma, virtue signalling and the subversion of mandates. The public health response had mixed reactions, with useful information about preventive measures being diluted by COVID-19 denialism and fake news. Health and other authorities were frequently perceived as out of touch with, and unresponsive to, the everyday realities of local communities.
Our study demonstrates the connectedness of people and the need to maintain and re-establish severed connections. A holistic approach to health care and promotion from social determinants of health and a community-engaged perspective may significantly increase the outcomes of public health responses.
People with everyday experience of the COVID-19 pandemic—including community members, healthcare workers, case managers, carers and researchers—collaborated on the study design, interview schedule, data interpretation, analysis and refinement of this article.
Persons with young-onset dementia (YOD) are confronted with specific challenges. Due to the neurodegenerative nature of the disease, people diagnosed with YOD face many changes with different consequences, for example, regarding their life perspective. These changes can give rise to transition processes and strategies for coping, hopefully stimulating well-being and acceptance. However, this might not always be the case, and support may be warranted. Our aim was to describe the experiences of those living with YOD due to Alzheimer's disease (AD) and identify signs of transitions during the first year after diagnosis.
In this qualitative interview study, we explore the experiences of younger persons living with AD. Thirteen participants under the age of 65 years (nine female and four male; mean age: 57) were included 1 year after being diagnosed with AD. The interviews were transcribed verbatim and analyzed using qualitative content analysis with a deductive approach. To gain a deeper understanding of the data, Meleis's transitions theory was used as a theoretical framework.
Two categories were identified: ‘Life has changed’ and ‘Mastering a changed life situation’. One year after diagnosis, participants described how they experienced a changed life situation, changing symptoms, a loss of meaningful activities and an increased risk of social isolation. Furthermore, living with uncertainty about the future caused feelings of being disconnected. Awareness was described as an important aspect of coping with YOD and progressing in the transition process. Participants also highlighted the importance of support from others.
The results suggest that preventing social isolation is important in facilitating healthy transitions. Therefore, professionals need to identify signs of transitions and be aware of the complexity of coping with YOD, thereby helping to prevent unwanted responses to change and facilitate a healthy transition process.
The findings are based on interviews with 13 persons with YOD and provide insight into experiences of living with YOD.
J. Cunningham-Erves, T. Mayo-Gamble, L. Campbell, et al., “The Bidirectional Engagement and Equity (BEE) Research Framework to Guide Community-Academic Partnerships: Developed From a Narrative Review and Diverse Stakeholder Perspectives,” Health Expectations 27, no. 4 (August 2024): e14161, https://doi.org/10.1111/hex.14161.
In Figure 2, “The bidirectional equity and engagement (BEE) research framework”, the text “research teams” and “academic partners” were placed incorrectly. The text should have read: “Academic partner” linked with community partner, and “research teams” in the second level linked with community members, patients, advocates, and caregivers.
We apologize for this error.
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