Support after COVID-19 study: a mixed-methods cross-sectional study to develop recommendations for practice

Abstract

Objectives of study stage 1 were to: explore people’s experiences of illness due to COVID-19 while feeling socially isolated or socially isolating; identify perceptions of what would support recovery; and synthesise insights into recommendations for supporting people after COVID-19. Study stage 2 objectives were to engage stakeholders in evaluating these recommendations and analyse likely influences on access to the support identified.DesignA two-stage, multimethod cross-sectional study was conducted from a postpositivist perspective. Stage 1 included an international online survey of people’s experiences of illness, particularly COVID-19, in isolation (n=675 full responses). Stage 2 involved a further online survey (n=43), two tweetchats treated as large online focus groups (n=60 and n=27 people tweeting), two smaller focus groups (both n=4) and one interview (both using MS teams).SettingStage 1 had an international emphasis, although 87% of respondents were living in the UK. Stage 2 focused on the UK.ParticipantsAnyone aged 18+ and able to complete a survey in English could participate. Stage 2 included health professionals, advocates and people with lived experience.Main outcome measuresDescriptive data and response categories derived from open responses to the survey and the qualitative data.ResultsOf those responding fully to stage 1 (mean age 44 years); 130 (19%) had experienced COVID-19 in isolation; 45 had recovered, taking a mean of 5.3 (range 1–54) weeks. 85 did not feel they had recovered; fatigue and varied ‘other’ symptoms were most prevalent and also had most substantial negative impacts. Our draft recommendations were highly supported by respondents to stage 2 and refined to produce final recommendations.ConclusionsRecommendations support access to progressive intensity and specialism of support, addressing access barriers that might inadvertently increase health inequalities. Multidisciplinary collaboration and learning are crucial, including the person with COVID-19 and/or Long Covid in the planning and decision making throughout.

Person-Centered Healthcare Practice in a Pandemic Context: An Exploration of People's Experience of Seeking Healthcare Support

“…The first stages of this study have previously been reported ( 25 ). We are now reporting the third stage, and will provide some methodological detail from the first two stages because they are interlinked.…”

"There is no one who helps you with it." Experiences of people with long COVID regarding medical care, therapeutic measures, and barriers in the German healthcare system: results of a qualitative study with four focus groups

“…Other studies also indicate that medical care is perceived as inadequate by many people with long COVID complaints. This represents an additional psychological burden for those affected [22], [23]. In a study by Wurz et al [43], the majority of participants with long COVID reported ignorance or rejection by their primary care providers, leading to helplessness and frustration.…”

“…Structural barriers to adequate (standard) healthcare for people with long COVID were identi ed as (1) lack of fundamental care concepts, (2) lack of awareness of long COVID in the healthcare system, (3) poor access to relevant specialists, (4) lack of specialized one-stop-shops such as specialized long COVID outpatient clinics, (5) high bureaucratic hurdles to arrange appointments or receive rehabilitation measures, (6) lack of specialization of rehabilitation clinics and programs. The few studies that consider the issue of healthcare barriers in long COVID brie y address individual problems reported in this paper, such as the lack of sensitivity of care providers to the concerns of affected individuals, the lack of scienti c evidence and care concepts, and the lack of specialization of healthcare and service providers [8], [23].…”

“…To develop intersectoral coordinated interventions and services for people with long COVID, the literature recommends the design and dissemination of evidence-based multidisciplinary treatment guidelines [8], [23]. In some European countries, such as Austria, France, Germany, or Norway, the rst guidelines or action plans have already been published, which are aimed at service providers, medical staff, and/or patients.…”

“…First studies have shown that many people with long COVID perceive their medical care as inadequate [22], [23]. They describe a lack of acceptance of their symptoms by health professionals, which leads to uncertainty and the feeling of being left alone [22], [24], [25].…”