Public health measures during the COVID-19 pandemic through the lens of community organisations and networks in the Netherlands (2020-2021): five lessons for pandemic decision-making.

BackgroundDuring the coronavirus disease (COVID-19) pandemic, key persons who were formally or informally active in community organisations and networks, such as sports clubs or cultural, educational, day care and healthcare facilities, occupied a key position between governments and citizens. However, their experiences, the dilemmas they faced and the solutions they generated when implementing COVID-19 measures in their respective settings are understudied.AimWe aimed to understand how key persons in different community organisations and networks experienced and responded to the COVID-19 measures in the Netherlands.MethodsBetween October 2020 and December 2021, the Corona Behavioural Unit at the Dutch national public health institute, conducted qualitative research based on narratives derived from 65 in-depth interviews with 95 key persons from 32 organisations and networks in eight different sectors.ResultsFirstly, key persons enhanced adherence and supported the resilience and well-being of people involved in their settings. Secondly, adherence was negatively affected where COVID-19 measures conflicted with important organisational goals and values. Thirdly, small changes and ambiguities in COVID-19 policy had substantial consequences, depending on the context. Fourthly, problem-solving was achieved through trial-and-error, peer support, co-creation and transparent communication. Lastly, the COVID-19 pandemic and measures highlighted inequalities in access to resources.ConclusionPandemic preparedness requires organisational and community preparedness and a multidisciplinary public health approach. Structural engagement of governments with key persons in community organisations and networks is key to enhance public trust and adherence to pandemic measures and contributes to health equity and the well-being of the people involved.

How to relate to dialysis patients' fatigue - perspectives of dialysis nurses and renal health professionals: A qualitative study.

BACKGROUND: Although fatigue among the dialysis population is known as a severe and debilitating health problem, this symptom is often under recognized and undertreated. OBJECTIVE: This qualitative study aimed to gain a better understanding of how dialysis nurses and renal health professionals perceive and address dialysis patient's fatigue in renal care practice. DESIGN: We conducted a qualitative descriptive study to explore how nurses and renal health professionals perceive and address dialysis patients' fatigue in their daily health care practices. A constructivist grounded theory approach guided analysis and conceptualisation of findings. SETTING(S): This study took place at 13 academic and regional settings across the Netherlands. The study was approved by the Medical Ethics Committee (2015.049), on behalf of VU University medical center in Amsterdam. PARTICIPANTS: Twenty-one renal health professionals of various disciplines took part in interviews: ten dialysis nurses, four nephrologists, two physician assistants, five medical social workers. METHODS: Semi-structured interviews were conducted in order to gain in-depth insight into the perspectives of dialysis nurses and renal health professionals. An inductive thematic analysis provided insight into health professionals' stances toward dialysis patients' fatigue in light of their daily care context and practices. RESULTS: Two main themes emerged; 1) 'Fatigue in the background': Shows there is strong focus on medical-technical aspects of the disease. All health professionals perceive fatigue as an intangible symptom that is difficult to address, and falls outside their scope of responsibility and competence. Communication about fatigue among professionals and with patients is limited, pushing fatigue further into the background. 2) 'Vulnerabilities in the background': Especially nurses and social workers signal the accumulating vulnerabilities of dialysis patients and associate these with fatigue (old age, multimorbidities, financial and social problems). Although the need for psychological support is acknowledged, multiple vulnerabilities increase the complexity and intensity of care, and further strengthens the medical-technical focus of care and treatment. CONCLUSIONS: There is a need to enable renal health professionals to communicate about the complex nature of fatigue in renal patients and stimulate interdisciplinary exchange and shared responsibility. Dialysis nurses have frequent contact with patients during dialysis treatment and are the first to notice when patients' fatigue increases and their overall condition deteriorates. They can play an important role to go beyond the technological imperative of care and understand the lived experiences of patients within their social contexts.

A continuous juggle of invisible forces: How fatigued dialysis patients manage daily life.

Dialysis patients commonly experience severe fatigue. Fatigue is known as an intrusive symptom strongly affecting perceived quality of life. A total of 23 interviews were conducted to explore how dialysis patients respond to fatigue symptoms and its consequences in daily life. A constructivist grounded theory approach guided data analysis and conceptualization of findings. Patients find themselves within a continuous decision loop, considering ones (physical) abilities and questioning ones normative beliefs and values. This inner process interacts with the outside world, and contains various ambiguities. Improved understanding of this demanding process could help to better address fatigue and positively contribute to the quality of life of dialysis patients.

A Qualitative Study on Experiences and Perspectives of Members of a Dutch Medical Research Ethics Committee.

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee (MREC) regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members.

Fear, fight, familiarize: the experiences of people living with relapsing-remitting multiple sclerosis and taking oral medication.

Purpose: In addition to becoming familiar with the life changing event of having a chronic illness and exploring its meaning in daily life, people with relapsing-remitting Multiple Sclerosis (RRMS) are faced with important decisions about immunomodulating treatment. Biomedical research on the use of Disease Modifying Therapies (DMTs) mostly focuses on adherence, conceptualized and understood as a behavioral act leading to a desired outcome. Less attention has been paid to the meaning for a person with RRMS of starting and continuing the use of DMTs. Studies on the experiences of people with RRMS taking orally administered DMTs are lacking. The aim of this phenomenological study was to examine the experiences of people with RRMS taking oral medication. Methods: The study was guided by Interpretative Phenomenological Analysis (IPA) and Phenomenology of Practice. 25 persons with RRMS participated in in-depth interviews. Results: In general, participants of this study find themselves in alternating phases that vary by degree of experienced unfamiliarity or familiarity with concern to one's illness, one's changing body, and one's new life. The meaning of taking medication is closely related to these phases. Conclusions: Adherence serves a purpose in the lifeworlds of participants. Medication is the embodiment of this purpose. The pill has inherent meaning.

Wishes and preferences for an online lifestyle program for brain health-A mixed methods study.

INTRODUCTION: Individuals with subjective cognitive decline (SCD) are at increased risk of Alzheimer's disease and could benefit from a prevention strategy targeting lifestyle factors. Making a program available through the Internet gives a widespread reach at low cost, but suboptimal adherence is a major threat to effectiveness. As a first step in developing an online lifestyle program (OLP), we aimed to identify factors that are barriers and/or facilitators for the use of an OLP in individuals with SCD in three European countries. METHODS: As part of the Euro-SCD project, SCD subjects were recruited at memory clinics in the Netherlands, Germany, and Spain. We combined quantitative and qualitative methods, using a mixed methods approach. We conducted an online 18-item survey on the preferences of SCD patients for an OLP (N = 238). In addition, we held semi-structured interviews (N = 22) to gain in-depth understanding of factors acting as a facilitator and/or barrier for intended use of an OLP. Audio recordings were transcribed verbatim. Content analysis was performed. RESULTS: One hundred seventy-six individuals completed the survey (response rate 74%). Almost all participants regularly use the Internet (97%). Participants reported trustworthiness (93%), user-friendliness (91%), and up-to-date information (88%) as main facilitators, whereas having contact with other users (26%), needing an account (21%), and assignments (16%) were reported as barriers. Barriers differed slightly between countries, but facilitators were largely similar. In-depth interviews revealed that both program characteristics (e.g., trustworthiness, user-friendliness, and personalization) and personal factors (e.g., expectancy to receive negative feedback) are likely to influence the intended use of an OLP. DISCUSSION: Involving users provided in-depth understanding of factors associated with the intended use of an OLP for brain health. Both program characteristics and personal factors are likely to influence the use of an OLP. Based on this input from the end-users, we will develop an OLP for individuals with SCD.

Why older workers work beyond the retirement age: a qualitative study.

BACKGROUND: The aims of the present study were to: 1) gain insight into reasons for working beyond the statutory retirement age from older workers' perspectives, and 2) explore how the domains of the research framework Study on Transitions in Employment, Ability and Motivation (STREAM) can be applied to working beyond retirement age. METHODS: A qualitative research design included individual interviews (n = 15) and three focus groups (n = 18 participants) conducted with older workers aged 65 years and older continuing in a paid job or self-employment. Interview participants were recruited from an existing STREAM cohort study. Focus group participants were recruited from companies and employment agencies. The data were subjected to thematic analysis. RESULTS: The most important motives for working beyond retirement age were maintaining daily routines and financial benefit. Good health and flexible work arrangements were mentioned as important preconditions. The themes emerging from the categorization of the motives and preconditions corresponded to the domains of health, work characteristics, skills and knowledge, and social and financial factors from the STREAM research framework. However, our analysis revealed one additional theme-purpose in life. CONCLUSION: This study offers important new insights into the various preconditions and motives that influence working beyond retirement age. In addition, the five domains of the STREAM research framework, including the additional domain of 'purpose in life', seem to be applicable to working beyond retirement age. This knowledge contributes to the development of work-related interventions that enhance older workers' motivation to prolong their working lives.

Work-related change in residential elderly care: Trust, space and connectedness.

Increasing care needs and a declining workforce put pressure on the quality and continuity of long-term elderly care. The need to attract and retain a solid workforce is increasingly acknowledged. This study reports about a change initiative that aimed to improve the quality of care and working life in residential elderly care. The research focus is on understanding the process of workforce change and development, by retrospectively exploring the experiences of care professionals. A responsive evaluation was conducted at a nursing home department in the Netherlands one year after participating in the change program. Data were gathered by participant observations, interviews and a focus and dialogue group. A thematic analysis was conducted. Care professionals reported changes in workplace climate and interpersonal interactions. We identified trust, space and connectedness as important concepts to understand perceived change. Findings suggest that the interplay between trust and space fostered interpersonal connectedness. Connectedness improved the quality of relationships, contributing to the well-being of the workforce. We consider the nature and contradictions within the process of change, and discuss how gained insights help to improve quality of working life in residential elderly care and how this may reflect in the quality of care provision.

Protocol of a mixed method, randomized controlled study to assess the efficacy of a psychosocial intervention to reduce fatigue in patients with End-Stage Renal Disease (ESRD).

BACKGROUND: Patients with end-stage renal disease (ESRD) commonly suffer from severe fatigue, which strongly impacts their quality of life (QoL). Although fatigue is often attributed to disease- and treatment characteristics, research also shows that behavioural, psychological and social factors affect perceived fatigue in dialysis patients. Whereas studies on fatigue in other chronic patient groups suggest that psychological or psychosocial interventions are effective in reducing fatigue, such interventions are not yet available for ESRD patients on dialysis treatment. The objective of this study is to examine the efficacy of a psychosocial intervention for dialysis patients aimed at reducing fatigue (primary outcome) and improving QoL (secondary outcome). The intervention consists of counselling sessions led by a social worker. The implementation process and patients' and social workers' expectations and experiences with the intervention will also be evaluated. METHODS/DESIGN: This study follows a mixed-methods design in which both quantitative and qualitative data will be collected. A multi-centre, randomised controlled trial (RCT) with repeated measures will be conducted to quantitatively assess the efficacy of the psychosocial intervention in reducing fatigue and improving QoL in ESRD patients. Additional secondary outcomes and medical parameters will be assessed. Outcomes will be compared to patients receiving usual care. A sample of 74 severely fatigued dialysis patients will be recruited from 10 dialysis centres. Patients will be randomly assigned to the intervention or control group. Outcomes will be assessed at baseline, post intervention/16 weeks, and at three and six-month follow-ups. A qualitative process evaluation will be conducted parallel to/following the effectiveness RCT. Interviews and focus groups will be conducted to gain insight into patients' and social workers' perspectives on outcomes and implementation procedures. Implementation fidelity will be assessed by audio-taped and written registrations. Participatory methods ensure the continuous input of experiential knowledge, improving the quality of study procedures and the applicability of outcomes. DISCUSSION: This is the first mixed method study (including an RCT and qualitative process evaluation) to examine the effect and implementation process of a psychosocial intervention on reducing fatigue and improving QoL in ESRD patients on dialysis treatment. TRIAL REGISTRATION: NTR5366 , The Netherlands National Trial Register (NTR), registered August 26, 2015.