Patient and public involvement in the development of the digital tool MyBoT to support communication between young people with a chronic condition and care providers.

INTRODUCTION: To guide good practices in patient and public involvement (PPI), several calls have been made to share detailed accounts of practical experiences. We describe our collaboration with young people with a chronic condition (YPCC) in the development, testing and implementation of the digital communication tool MyBoT (Map your Burden of Treatment). METHODS: MyBoT was developed by a team of academic researchers, some of whom were practising care providers, YPCC and designers. In addition to the two co-researchers in the research team, various groups of YPCC were involved in decision-making through participation in a design session, workshops and a dialogue session. The Involvement Matrix was used to reflect on the PPI of all YPCC. RESULTS: Initially, the two co-researchers were involved in the roles of informer and co-thinker, but their decision-making power within the study increased over time. In the final stages of the study, the co-researchers and researchers became partners. The other YPCC who participated in the different sessions and workshops were co-thinkers in all stages of the study. CONCLUSION: The PPI of two YPCCs as co-researchers within the research team ensured continuous involvement, whereas the PPI of various groups of YPCCs guaranteed a representative and inclusive approach. Researchers play an essential role in bringing all perspectives together, integrating them within the technical and financial constraints and ultimately building a tool that is tailored to its users' needs. PATIENT OR PUBLIC CONTRIBUTION: YPCC played a significant role in the present study. Two YPCC-who are also co-authors of this paper-were involved in all stages of this project as members of the research team. In addition, various YPCCs were involved in the development, testing and implementation stage of MyBoT by organizing design sessions, workshops and a dialogue session.

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.

Evaluating meaningful impact of Patient and Public Involvement: A Q methodology study among researchers and young people with a chronic condition.

INTRODUCTION: Although Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) is receiving increasing attention, evidence of impact is lacking. This is partly due to inadequate understanding of what meaningful impact entails. This study aimed to gain an in-depth understanding of researchers' and YPCC's perspectives on meaningful impact. METHODS: We conducted a Q methodology study in a group of 26 researchers and a group of 20 YPCC with experience in PPI. Participants ranked statements about impact (e.g., 'YPCC acquire new knowledge and skills') based on their agreement with them. During interviews, they reflected on their rankings (Q sorts). Factor analysis was conducted to identify similar patterns in the individual Q sorts. The interviews were used to determine and interpret the final factor solution. The resulting factors represented distinct perspectives on meaningful impact. RESULTS: Four distinct perspectives on meaningful impact of PPI were identified. Two were predominantly based on the Q sorts of researchers, for example improving research quality and facilitating dialogue and understanding, and two on the Q sorts of YPCC, for example achieving equality and inclusivity and doing justice to YPCC's rights. The factors were defined by 37 Q sorts (80%); 9 Q sorts did not load significantly on any of the factors. CONCLUSION: The results indicate that researchers and YPCC can have different views about the meaningful impact of PPI. The perspectives identified here can serve as an aid when discussing these different views and formulating operational indicators of impact. PATIENT OR PUBLIC CONTRIBUTION: An adolescent with a chronic condition was involved in the early phases of this study. She helped in formulating the statements and recruiting YPCC.

Patients' and health professionals' views on shared decision-making in age-related macular degeneration care: A qualitative study.

BACKGROUND: Age-related macular degeneration (AMD) is one of the principal causes of irreversible visual impairment in the older adult population. Recent evidence indicates that there are signs of undertreatment and overtreatment, underdiagnosis and insufficient information provision in AMD care. Shared decision-making (SDM) can aid information sharing between patients and health professionals and enhances high-quality care. This research aimed to gain insight into patients' and professionals' views on SDM in AMD care. METHODS: Semi-structured interviews were conducted with 20 patients with AMD and 19 health professionals in June and July 2020. Participants were recruited through hospitals, professional and patient associations and (social) networks. Sample representativeness was ensured in terms of sociodemographic and disease characteristics for patients, and profession-related characteristics for health professionals. Interviews were analysed according to a predetermined coding framework. RESULTS: Although SDM is receiving attention in AMD care, health professionals and patients experienced barriers in making shared decisions. The most common barriers reported included limitations in treatment options, time constraints, strict treatment guidelines and patients' comorbidity. Furthermore, most patients indicated that they were not (fully) informed about all aspects of AMD trajectory, such as the possibility to discontinue therapy or the long-term and invasive character of treatment. Some patients expressed the need for a more empathic and person-centred communication style from their health professional. CONCLUSION: The concerns raised by patients and health professionals suggest that there is room for improvement in delivery of SDM in AMD care. Findings from this study indicate that information provision and communication can be improved.

Self-management of social well-being in a cross-sectional study among community-dwelling older adults: The added value of digital participation.

BACKGROUND: This study aimed to examine associations between self-management abilities and digital participation among community-dwelling older adults with chronic conditions in the Netherlands. METHODS: The study utilized a cross-sectional design. Community-dwelling older adults were sampled from a Dutch nationwide panel study performed in October and November of 2019. We selected all adults of 65 years and above who had one or more chronic diseases (n = 1,656). Self-management was measured by six abilities (e.g., investing in resources for long-term benefits and taking care of a variety of resources), whereas digital participation was estimated with the frequency of four social internet uses (e.g., using social network websites and calling digitally). RESULTS: When predicting self-management abilities from digital participation, hierarchical multiple regression analysis determined statistically significant and positive relationships, in particular for e-mailing (ß = 0.21; p < .001) and meeting new people online (ß = 0.07; p < .05). Correlation analyses showed that highest associations were found between internet usage and the self-management abilities 'taking initiative' (r = .23; p < .001) and 'being self-efficacious' (r = .21; p < .001). Moreover, the study confirmed that higher age (ß = -0.13; p < .001) and increased severity of disability (ß = -0.12; p < .01) negatively impact abilities for self-management. CONCLUSIONS: These findings suggest that internet usage and self-management abilities are positively related in the older adult population. Further research should be undertaken to examine the links between self-management abilities and digital participation more closely.

Exploring the impact of patient and public involvement with young people with a chronic condition: A multilevel analysis.

BACKGROUND: Patient and Public Involvement (PPI) of young people with a chronic condition (YPCC) receives increasing attention. However, evidence of its impact is lacking. This study explores the impact of PPI on outcomes of projects in health and social care, using quantitative measures. METHODS: Data were collected from projects funded by a 4-year participatory program addressing the social position of YPCC. These projects addressed challenges associated with, for example, going to college with a physical disability, transitions in care and finding a job. Project coordinators filled out project reports with questions about PPI, that is, to what extent were YPCC involved, were they involved as co-deciders and were they involved in developing the project idea. YPCC filled out questionnaires with questions about PPI, that is, the number of PPI activities and self-perceived importance for the project. They also answered questions about the influence of the project on their social position. Based on these questions, a project outcome scale was developed. RESULTS: The data concerned 17 projects and 146 YPCC. Variation existed in project outcomes, of which 27% was associated with differences between projects. Using multilevel analyses, a significant relation was found between the self-perceived importance of YPCC for the project and the project outcomes they experience (0.232, p < 0.01). There was no significant association with the other PPI variables. CONCLUSIONS: This study provided some first quantitative evidence that PPI has a positive impact on the YPCC involved. It is suggested that the meaningfulness of PPI matters more to them than the number of activities and amount of influence provided to YPCC. We strongly recommend conducting more research that critically examines impact of PPI.

What difficulties do people with mild intellectual disabilities experience when seeking medical help from their GP? A qualitative study.

BACKGROUND: People with intellectual disabilities often have low health literacy as a result of their limited language comprehension. The aim of this study was to explore the difficulties Dutch people with intellectual disabilities experience during the process of considering and seeking medical help from their GP. The study was intended as input for an online intervention supporting health literacy. METHODS: A qualitative study, in which 12 semi-structured interviews were conducted with people with mild intellectual disabilities and 4 with relatives of people with mild intellectual disabilities. The interviews were analysed following the principles of thematic analysis. RESULTS: Difficulties were experienced in the following activities: assessing and proactively reacting to health complaints, processing health information, communicating with a GP and retaining information from the consultation. Support workers and relatives play an important role in all these activities. CONCLUSIONS: To increase the capacity of people with intellectual disabilities to manage their health and seek care from their GP, it is important to support them in the activities they find difficult. Recommendations resulting from the study have been incorporated in an online intervention.

Patient and Public Involvement of young people with a chronic condition in projects in health and social care: A scoping review.

BACKGROUND: The involvement of young people with a chronic condition in research and implementation projects in health and social care receives growing attention. Yet, there is a lack of conceptual clarity of this so-called 'Patient and Public Involvement' (PPI) and methods to systematically evaluate it are absent. This scoping review aimed to gain insight into developments in the existing literature on PPI of young people with a chronic condition by mapping reported definitions, goals, activities, experiences and impact. METHODS: We conducted searches in Cinahl, Embase, PsycINFO, PubMed and Scopus. Included articles described involvement of young people with a chronic condition in research and implementation projects, contained empirical data, were written in English and were published after 1990. Two researchers independently carried out the data extraction. RESULTS: Twenty-three studies out of 4993 initial hits met the inclusion criteria. We found great variation in definitions and operationalizations of PPI. Reflections of authors on the process of PPI and its impact were similar and did not change over the years. DISCUSSION AND CONCLUSION: Limited progress in the evidence base of the impact of PPI with young people with a chronic condition was found. Over the years, studies continue to report similar experiences and challenges. In order to move forward, we suggest future research to make connections to existing work instead, to include thorough descriptions of what is understood by PPI and how this is translated into activities, and to use systematic and objective, but also flexible, methods to measure its impact.

Understanding Decision-Making and Decision Difficulty in Women With an Unintended Pregnancy in the Netherlands.

Previous research indicates that a considerable number of women with an unintended pregnancy experience difficulty deciding about continuing or terminating the pregnancy. We examined the decision-making processes of women who experienced high decision difficulty and women who experienced little decision difficulty, to gain insight in the factors that contribute to experienced decision difficulty. Sixty-nine women who had an abortion, and 40 women who had decided to continue their unintended pregnancy, participated in qualitative interviews. We found that women's decision processes varied on 11 relevant criteria. The decision-making processes of women who experienced little decision difficulty differed from that of women who experienced high decision difficulty, but the decision-making processes of women who carried their pregnancy to term and the high decision difficulty abortion group were strikingly similar. Implications of our findings for future research and for professional care for women who are in need of support during decision-making are discussed.

A realist review: what do nurse-led self-management interventions achieve for outpatients with a chronic condition?

AIM: The aim of this study was to examine how nurse-led interventions that support self-management of outpatients with chronic conditions work and in what contexts they work successfully. BACKGROUND: Self-management could be directed at goals such as quality of life, adherence or patients' empowerment. Self-management support is an increasingly important task of nurses. Many nurse-led interventions have been developed but it is not clear how these actually help improve patients' self-management capabilities. DESIGN: Realist review. DATA SOURCES: Primary research studies on self-management support interventions conducted by nurses from January 2000 until March 2015 were retrieved from all relevant databases. The studies had a before-after design and used qualitative and quantitative methods. REVIEW METHODS: For each study, we described how the intervention was supposed to improve self-management and compared this with the empirical evidence. Next, we described the context-mechanism-outcome strings for each separate study, explored patterns and integrated the findings. RESULTS: Thirty-eight papers were included, evaluating 35 interventions concerning a diversity of conditions. Seven different context-mechanism-outcome strings were identified. Interventions focusing on patients' intrinsic processes were most successful. Least successful were interventions only providing education aimed at patient behaviour change. Various contexts can influence the success of the interventions: involvement of relatives, target group (i.e. chronic condition, motivation, being recently diagnosed or not), involvement of fellow patients and intervention group homogeneity or heterogeneity. CONCLUSION: Successful interventions focus on patients' intrinsic processes (i.e. motivation or self-efficacy). This would guide nurses to decide what self-management support intervention they can best use in their specific setting and patient group.

Lives on hold: A qualitative study of young refugees' resilience strategies.

Although the literature on positive adjustment following traumatic events is growing, only a few studies have examined this phenomenon in young refugees. Using the social-ecological framework, the aim of this study was to identify factors and processes that according to young refugees promote their resilience. A total of 16 treatment-seeking refugees aged 13-21 years, living in the Netherlands, were interviewed. Data analysis revealed four resilience strategies: (1) acting autonomously, (2) performing at school, (3) perceiving support from peers and parents, and (4) participating in the new society. These strategies interacted with one another and demonstrated the interrelatedness between individuals and their social context. Having to wait long for a residence permit and being older appeared to negatively influence participants' resilience strategies. These findings suggest that resilience refers to a dynamic process that is context and time specific.

Reasons for accepting or declining Down syndrome screening in Dutch prospective mothers within the context of national policy and healthcare system characteristics: a qualitative study.

BACKGROUND: Uptake rates for Down syndrome screening in the Netherlands are low compared to other European countries. To investigate the low uptake, we explored women's reasons for participation and possible influences of national healthcare system characteristics. Dutch prenatal care is characterised by an approach aimed at a low degree of medicalisation, with pregnant women initially considered to be at low risk. Prenatal screening for Down syndrome is offered to all women, with a 'right not to know' for women who do not want to be informed on this screening. At the time this study was performed, the test was not reimbursed for women aged 35 and younger. METHODS: We conducted a qualitative study to explore reasons for participation and possible influences of healthcare system characteristics. Data were collected via ten semi-structured focus groups with women declining or accepting the offer of Down syndrome screening (n = 46). All focus groups were audio- and videotaped, transcribed verbatim, coded and content analysed. RESULTS: Women declining Down syndrome screening did not consider Down syndrome a condition severe enough to justify termination of pregnancy. Young women declining felt supported in their decision by perceived confirmation of their obstetric caregiver and reassured by system characteristics (costs and age restriction). Women accepting Down syndrome screening mainly wanted to be reassured or be prepared to care for a child with Down syndrome. By weighing up the pros and cons of testing, obstetric caregivers supported young women who accepted in the decision-making process. This was helpful, although some felt the need to defend their decision to accept the test offer due to their young age. For some young women accepting testing, costs were considered a disincentive to participate. CONCLUSIONS: Presentation of prenatal screening affects how the offer is attended to, perceived and utilised. By offering screening with age restriction and additional costs, declining is considered the preferred choice, which might account for low Dutch uptake rates. Autonomous and informed decision-making in Down syndrome screening should be based on the personal interest in knowing the individual risk of having a child with Down syndrome and system characteristics should not influence participation.

Self-management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies.

BACKGROUND: Receiving adequate support seems to be crucial to the success of self-management. Although different empirical studies separately examined patients' preferences for self-management support (SMS), an overview is lacking. OBJECTIVE: The aim of this qualitative review was to identify patients' needs with respect to SMS and to explore by whom this support is preferably provided. SEARCH STRATEGY: Qualitative studies were identified from Embase, MEDLINE OvidSP, Web of science, PubMed publisher, Cochrane central, the Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO. INCLUSION CRITERIA: Articles needed to meet all of the following criteria: (i) focuses on self-management, (ii) concerns adult patients with rheumatic diseases (rheumatoid arthritis and fibromyalgia), a variant of cancer or chronic kidney disease, (iii) explores support needs from the patients' perspective, (iv) uses qualitative methods and (v) published in English. DATA EXTRACTION AND SYNTHESIS: A thematic synthesis, developed by Thomas and Harden, was conducted of the 37 included studies. MAIN RESULTS: Chronic patients need instrumental support, psychosocial support and relational support from health-care professionals, family/friends and fellow patients to manage the chronic condition. Relational support is at the centre of the support needs and fuels all other types of support. DISCUSSION AND CONCLUSIONS: Patients do not self-manage on their own. Patients expect health-care professionals to fulfil a comprehensive role. Support needs can be knitted together only when patients and professionals work together on the basis of collaborative partnership. Dynamics in support needs make it important to regularly assess patient needs.

Between power and powerlessness: a meta-ethnography of sources of resilience in young refugees.

OBJECTIVE: This article reviews available qualitative studies that report young refugees' ways of dealing with adversity to address their sources of resilience. DESIGN: We searched five electronic databases. Twenty-six empirical studies were included in the review. A meta-ethnography approach was used to synthesize these qualitative studies. RESULTS: Six sources of resilience emerged: (1) social support, (2) acculturation strategies, (3) education, (4) religion, (5) avoidance, and (6) hope. These sources indicated social as well as personal factors that confer resilience in young refugees, but most of them also had counterproductive aspects. CONCLUSION: The results, from an ecological developmental perspective, stressed the interplay between protective and risk processes in the mental health of young refugees who had resettled in Western countries, and they emphasized the variability as well as the universality of resilience-promoting processes. Further research is needed to explore the cultural shape of resilience and the long-term consequences of war and migration on young refugees.

Recording and accounting for stakeholder involvement in systematic reviews.

OBJECTIVES: The use of stakeholders in systematic reviews is increasingly valued, but their influence on the systematicity of the review is often unclear. The aim of this study was to describe some of the processes of involvement of stakeholders and to demonstrate a Tool for Recording and Accounting for Stakeholder Involvement (TRASI). METHODS: We demonstrate the TRASI in two worked examples. In one project, the reviewers collaborated with the end-user and an expert during the literature search. In the other project, experts were consulted to generate keywords before searching the literature. RESULTS: In the first project, disagreements about keywords to identify studies for the research topic were solved by informal discussion. In the second project, difficulties arose in reaching agreement between experts and reviewers about the core construct and the meaningful keywords associated with it. DISCUSSION: The TRASI aids researchers to systematically and transparently account for the decisions taken. The TRASI supports information specialists and librarians to shape the search strategy to match the objectives of the review. CONCLUSIONS: We propose the TRASI as a first step in resolving the challenges of detecting and reconstructing stakeholder influences. Potential new applications of the TRASI are discussed.

Frail Older Adults' Experiences With a Proactive, Nurse-Led Primary Care Program: A Qualitative Study.

The aim of the current study was to explore frail older adults' perceptions and experiences with a proactive, integrated nurse-led primary care program. A qualitative study nested within a randomized trial in primary care was conducted. In total, 11 semistructured interviews were conducted in a subsample of participants who received nurse-led care in the intervention group. Generally, proactive, nurse-led care was well-received and four different nursing roles were observed: (a) monitor, (b) director, (c) coach, and (d) visitor. The monitor role (i.e., observing and assessing potential risks) was perceived as the most important. The relationship with the nurse, timing of visits, and provided care, as well as tailoring the care to individual needs, were identified as conditions related to appreciation. If the care was well-regarded, older adults were more likely to accept it, which helped them anticipate changes or handle consequences of aging more easily.

Understanding healthcare communication in age-related macular degeneration care: A mixed-methods review of patients' perspectives.

Age-related macular degeneration (AMD) is the most common cause of irreversible visual impairment among people aged 50 years and older. Earlier research has indicated that the communication process between patients and healthcare professionals (HCPs) leaves considerable room for improvement in AMD care. Effective communication is essential to enhance trust in the professional and understanding of the diagnosis and treatment, and decrease anxiety and stress related to illness. We review patients' experiences, needs and preferences regarding information provision, communication style of the HCP and shared decision-making. We conducted a systematic search in PubMed, Embase, PsycINFO, CINAHL and Web of Science. Study quality was assessed using standard checklists of quality measures. Our search returned 31 eligible articles. Findings indicated current deficits in information provision for people with AMD. Patients were often ill-informed regarding the chronic character of the condition, treatment duration, nutrition, and visual aids and low vision rehabilitation. Many patients were not actively involved during the decision-making process. Altogether, patients with AMD are faced with challenges in terms of patient-HCP communication. Methods of providing information and discussing possible options for care need to be further investigated and improved for this patient group.

Let Us Talk Treatment: Using a Digital Body Map Tool to Examine Treatment Burden and Coping Strategies Among Young People with a Chronic Condition.

Purpose: Treatment for a chronic condition can pose a heavy burden on young people and affect their quality of life. The present study examined young people's experiences with treatment burden and their coping strategies. Patients and Methods: The body mapping method was employed, in which a life-sized outline of someone's body is traced and populated with visual representations, symbols and words. For the present study, a digital tool for body mapping was developed. This is a chat robot which helps young people make a body map by asking questions about their lives, wellbeing and the influence of their treatment on this. In two series of three workshops, ten young people (16 to 25 years) with a chronic, somatic condition created individual body maps using this tool. The body maps were discussed in the group to obtain insight into experiences with treatment burden. The findings were analysed using thematic analysis. In all stages of the study, two adolescents with a chronic condition were involved as co-researchers. Results: The results show that young people with a chronic condition experience considerable treatment burden. Although treatment reduces their symptoms, it also leads to physical and emotional side-effects, restrictions of meaningful activities, issues with future planning, reduced independence, and autonomy and loneliness. Young people apply several strategies to cope with this burden, such as seeking support from others, focusing on the positive, ignoring treatment advice, and seeing a psychologist. Conclusion: Treatment burden is a subjective experience and not merely based on the number or types of treatment. It is therefore vital that young people with a chronic condition discuss their experiences with their care provider. This can help to tailor treatment decisions to their lives and needs.