Routine healthcare disruptions: a longitudinal study on changes in self-management behavior during the COVID-19 pandemic.

BACKGROUND: The outbreak of COVID-19 had a significant impact on routines and continuity of professional care. As frequent users of this professional care, especially for people with chronic diseases this had consequences. Due to barriers in access to healthcare, an even greater appeal was made on the self-management behaviors of this group. In the present study, we aim to investigate the extent to which self-management changed during the recent pandemic, and which factors contributed to these changes. METHODS: The Dutch 'National Panel of people with Chronic Illness or Disability' was used to collect self-reported data of people with at least one chronic disease. Self-management was assessed with the Partners in Health questionnaire at two time points: before the crisis in 2018 and during the second wave of crisis in Autumn 2020. Paired t-tests were used to analyze changes in self-management. Potential associating factors on three levels - patient, organization and environment - were assessed in 2020 and their impact on self-management changes was tested with multinomial logistic regression. RESULTS: Data from 345 panel members was available at two time points. In the majority of people, self-management behaviors were stable (70.7%). About one in seven experienced improved self-management (15.1%), and a similar proportion experienced deteriorated self-management (14.2%). Sex, physical disability, mental health and daily stressors due to COVID-19 (patient level), changes in healthcare access (organization level), and social support (environment level) were significantly associated with experienced changes in self-management. CONCLUSIONS: People with chronic diseases experienced different trajectories of self-management changes during COVID-19. We need to be aware of people who seem to be more vulnerable to a healthcare crisis and report less stable self-management, such as those who experience mental health problems or daily stressors. Continuity of care and social support can buffer the impact of a healthcare crisis on self-management routines of people with chronic diseases.

Effects of the COVID-19 pandemic on quality of life among relatives of individuals with intellectual disabilities: A longitudinal study.

BACKGROUND: The COVID-19 pandemic poses risks to the quality of life (QoL) of relatives of individuals with intellectual disabilities. This paper investigates relatives' QoL and associated risk and buffering factors before and during the pandemic. METHOD: Surveys were administered to three samples of relatives in the Netherlands in 2019 (N = 105) and during the first waves of COVID-19 in June (N = 207) and October 2020 (N = 332). Associations between QoL and care burden, care competence, social support, and resilience, and changes over time were analysed using (logistic) regressions. RESULTS: No significant changes in overall QoL nor its domains were found. Care burden was negatively associated with QoL and increased during the pandemic. Care competence was lower than in 2019. Competence, social support, and resilience were positively associated with QoL. CONCLUSIONS: Although relatives' QoL remained stable, the pandemic poses non-negligible risks to their wellbeing. It is, therefore, crucial to provide relatives with adequate support.

'I cannot be missed yet': A qualitative study of carers of family members with an intellectual disability about long-term care planning during the COVID-19 pandemic.

BACKGROUND: Family carers of people with an intellectual disability sometimes need to transfer their caregiving tasks for example because of illness or ageing. We examined carers' experiences with long-term care planning and the impact of the COVID-19 pandemic on their intentions to engage in long-term planning in the Netherlands. METHOD: Twenty-five semi-structured interviews with family carers of people with an intellectual disability were conducted and 169 answers to an open question were thematically analysed. Data collection took place at three timepoints during 2020 and 2021. RESULTS: Family carers were recurrently concerned with long-term care planning, especially with finding people to whom they can entrust their tasks. However, they perceived barriers in care planning. The COVID-19 pandemic reinforced awareness of long-term care planning and moved some to action. CONCLUSIONS: The perceived urge to plan by family carers has grown due to the COVID-19 pandemic. The current study provides valuable insights for stakeholders to support them in this.

[Positive assessment of care has changed little during the COVID-19 pandemic, but there is still room for improvement]. / Positieve beoordeling van de zorg weinig veranderd tijdens de coronapandemie, maar nog altijd ruimte voor verbetering.

Introduction: Measuring patient experiences provides important insight into the quality of Dutch healthcare. The current research shows how quality of care has changed over the years and how it correlates with changes in healthcare and health during the COVID-19-pandemic. Method: Patient experiences were collected using satisfaction ratings and the quality indicator PREM Chronic Care, among a representative group of people with a chronic disease. Trend analyses with repeated measurements (2016-2020) were performed and differences between subgroups were tested with Mann-Whitney U tests. Results: Quality of care ratings are mainly positive, also during the COVID-19-pandemic in autumn of 2020. In that year, people are the least satisfied with the coordination between healthcare providers and with preventive healthcare of their illness (64% and 67% is satisfied respectively). Trend analyses show that satisfaction with preventive healthcare has declined and satisfaction with shared decision-making has fluctuated over the years. People who experience consequences for their health(care) during the COVID-19-pandemic, are less satisfied with different aspects of healthcare quality than those who experience no consequences. Conclusion: It seems important to pay attention to patient experiences about healthcare processes, with emphasis on additional information for prevention, support for changes in health and treatment during the COVID-19-pandemic, and good coordination between healthcare providers.

Positieve beoordeling van de zorg weinig veranderd tijdens de coronapandemie, maar nog altijd ruimte voor verbetering Positive assessment of care has changed little during the COVID-19 pandemic, but there is still room for improvement

Samenvatting Inleiding Het meten van patiëntervaringen geeft belangrijke inzichten in de kwaliteit van de Nederlandse gezondheidszorg. Het huidige onderzoek toetst in hoeverre de ervaren kwaliteit van zorg door de jaren heen is veranderd en hoe deze samenhangt met veranderingen in zorg en gezondheid tijdens de coronapandemie. Methode Patiëntervaringen zijn verzameld met tevredenheidsoordelen en de kwaliteitsindicator PREM Chronische Zorg, onder een representatieve steekproef van mensen met een chronische ziekte. Trendanalyses (2016–2020) zijn uitgevoerd en verschillen tussen subgroepen zijn getoetst met Mann-Whitney U‑toetsen. Resultaten De kwaliteit van de zorg wordt over het algemeen positief ervaren, ook tijdens de coronapandemie in het najaar van 2020. In dat jaar zijn mensen het minst tevreden over de afstemming tussen zorgverleners en over de preventieve begeleiding van hun ziekte (respectievelijk 64% en 67% is (helemaal) tevreden). Trendanalyses laten zien dat de tevredenheid over preventieve begeleiding is gedaald en dat de tevredenheid over gezamenlijke besluitvorming door de jaren heen schommelt. Mensen die gevolgen van de coronapandemie ervaren voor hun zorg of gezondheid beoordelen aspecten van de gezondheidszorg minder positief dan diegenen die geen gevolgen ervaren. Conclusie Het is belangrijk om aandacht te hebben voor patiëntervaringen met zorgprocessen, waarbij extra nadruk zou moeten liggen op informatie over preventie, ondersteuning bij veranderingen in de gezondheid en de behandeling tijdens de coronapandemie, en goede afstemming tussen zorgverleners. Digitaal aanvullende content De online versie van dit artikel (10.1007/s12508-022-00329-y) bevat aanvullend materiaal, toegankelijk voor daartoe geautoriseerde gebruikers.