Self-management support (SMS) in primary care practice: a qualitative focus group study of care professionals' experiences.

BACKGROUND: To support self-management of chronically ill persons, innovative approaches of care practice are being developed. Unfortunately, many self-management supporting interventions struggle to achieve reliable and consistent improvements at various levels (patient, provider and healthcare system level). One possible strategy to facilitate translating theory into practice, is to consider the healthcare professionals' perspective prior to the development of new interventions. An exploration of their knowledge and opinion about barriers and facilitators is necessary before employing any self-management support (SMS) intervention. Therefore, our study aims to explore care professionals' perspectives about SMS within the Flemish primary care setting. METHODS: This study used a qualitative study design to examine SMS in primary care setting. Five focus groups were conducted, grouped into three waves. Participants were healthcare professionals in Flanders representing different disciplines and settings. A maximum variation purposive sampling was used to recruit participants. For the data analysis, the framework of thematic networks by Attride-Stirling was applied. RESULTS: A total of 34 healthcare professionals participated. Three global themes related to SMS were derived from the thematic analysis: (1) Characteristics, (2) Support strategies, (3) Barriers and facilitators. SMS was characterised as a collaboration-based and person-centred approach. A variety of supporting strategies were mentioned by the focus group participants. Most strategies consisted of informing and educating patients. Complementary to individual strategies, collaborative strategies were deemed necessary to support self-management. Regarding barriers and facilitators, different patient-related factors were identified. Additionally, competencies of healthcare providers and external factors seem to hinder the implementation of SMS in practice. CONCLUSIONS: This focus group study highlights the importance of a collaborative, person-centred approach to SMS in the context of chronic diseases. Our findings point to the need for interventions that raise awareness and address barriers associated with SMS. Since generic SMS does not exist, the road to success is a growth process in which support must be adapted to the individual patient.

Biopsychosocial rehabilitation in the working population with chronic low back pain: a concept analysis.

OBJECTIVE: To identify the essential attributes of biopsychosocial rehabilitation for chronic low back pain in the working population. DESIGN: A concept analysis was conducted according to the 8-step method of Walker and Avant. This framework provides a clear concept and theoretical and operational definitions. METHODS: Five databases were searched, followed by a systematic screening. Subsequently, attributes, illustrative cases, antecedents, consequences and empirical referents were formulated. RESULTS: Of the 3793 studies identified, 42 unique references were included. Eleven attributes were identified: therapeutic exercise, psychological support, education, personalization, self-management, participation, follow-up, practice standard, goal-setting, social support, and dietary advice. Subsequently, illustrative cases were described. Antecedents, such as motivation, preparedness and a multidisciplinary team, were found, together with consequences such as decreased pain, less sick-leave and increased function and work status. Finally, examples of empirical referents were given. CONCLUSION: This study identified the attributes that are necessary to develop biopsychosocial rehabilitation intervention programmes for chronic low back pain. The defined concept of biopsychosocial rehabilitation for chronic low back pain may serve as a solid base to further develop and apply interventions. Future research should focus on the objectification of biopsychosocial rehabilitation and conceptualization regarding how personalization is done.

The first step in developing an International Classification of Functioning, Disability and Health Core Set for Vision Loss: A systematic review.

AIM: As a first step in developing an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with vision loss, this systematic review sought to identify the researchers' perspective by identifying the most often used outcome measures and research topics obtained from studies on adults with vision loss. METHODS: PubMed, Embase, CINAHL, APA PsycINFO and Web of Science were searched for studies on vision loss. Meaningful outcome measures and research topics were linked to the ICF components: environmental factors, body functions, body structures and the Activities and Participation life domains. RESULTS: After deduplication, 7219 records remained, of which 2328 articles were eligible for further review. For feasibility reasons, approximately 20% were randomly chosen from every publication year, resulting in 446 included articles. After full-text reading, 349 articles remained, describing 753 outcome measures based on questionnaires and 2771 additional research topics that could be linked to the ICF. Most were linked to the component Activities and Participation, with a focus on recreation and leisure activities (ICF code d920, 70%), reading (d166, 34%) and driving (d475, 27%). For the component body function, seeing functions (b210, 83%) were most often reported. Outcome measures and research topics were least often linked to the body structure component and environmental factors. CONCLUSION: The broad range of ICF categories identified in this systematic review represents the variety of functioning typical for adults with vision loss. These results reflect the focus of researchers over the past 21 years by using various vision-related outcomes. In our next steps to develop the ICF Core Set for Vision Loss, we will include perspectives of experts and lived experience.

Self-Management Analysis in Chronic Conditions (SMACC) checklist: an international consensus-based tool to develop, compare and evaluate self-management support programmes.

OBJECTIVES: The Self-Management Analysis in Chronic Conditions (SMACC) checklist was developed as a guidance tool to support the development, comparison and evaluation of self-management support programmes for persons with a chronic condition. The checklist was based on a previously performed concept analysis of self-management. The aim of this study was to validate its content using an international Delphi study and to deliver a final version. DESIGN: A two-round Delphi study was conducted between October 2022 and January 2023. Using the researchers' networks, professionals with research or clinical expertise in self-management support and chronic conditions were recruited via online purposive snowball sampling. Participants were asked to score each item of the checklist (16 items total) on 3 content validity indicators: (1) clarity and comprehensibility, (2) relevance and importance and (3) degree of alignment with the overall goal of the checklist to promote adequate and comprehensive self-management support programmes. A consensus threshold of 75% agreement was used. The participants were also asked general questions about the checklist as a whole and were asked to provide feedback considering its refinement. RESULTS: Fifty-four professionals with an average 14.5 years of experience participated in round 1, 48 with an average 12.5 years of experience participated in round 2. The majority of professionals were from Western Europe. For the majority of items consensus was reached after round 1. In round 2, 3 of the 4 remaining items reached consensus, 1 last item was retained based on highly recurring feedback. CONCLUSIONS: The SMACC checklist was considered a valid and comprehensive tool to aid the development, evaluation and comparison of self-management support programmes. It was acknowledged as a useful instrument to supplement existing frameworks and was seen as feasible to implement in both research and clinical settings. Further validation in the field, with input from patients and peer experts, will be valuable.

Self-Management Interventions for Facilitating Life Participation for Persons with Kidney Failure: A Systematic Review.

BACKGROUND: For persons with kidney failure, life participation is a critically important outcome, strongly linked to quality of life and mortality. To support patients' self-management abilities, three domains are typically emphasized: medical management, emotional management, and management of everyday life ( i.e. , role management). Although role management is strongly linked to life participation, there is currently limited research on interventions designed to support it. We explored existing self-management interventions that aim to support everyday life functioning, rather than only medical management. METHODS: In this systematic review and qualitative meta-synthesis, we searched MEDLINE, Embase, CINAHL, PsycINFO, Web of Science, and CENTRAL up to April 2022 for interventional studies involving self-management interventions designed, at least partly, to support management of everyday life. The guidelines by Sandelowski and Barosso were used to analyze and synthesize the results. A taxonomy of everyday self-management strategies was used to further explore intervention content. Study quality was assessed using the Cochrane Collaboration risk-of-bias tools. Evidence of effectiveness was summarized, and a meta-analysis of eligible outcomes was conducted. RESULTS: Of 22,667 records, 53 studies were included in the meta-synthesis. Most self-management interventions focused on medical management. Included interventions involved strategies to support eight domains: Activities of daily living, Work and school life, Meaningful occupations, Leisure activities, Mobility and travel, Interpersonal relationships, Role functioning, and Social participation. Major interventions focused on providing education, skill training, counseling, and cognitive behavioral therapy. Evidence of effectiveness was reported across a wide range of patient-reported outcomes, including (health-related) quality of life, depression, and self-efficacy. Studies were geographically concentrated and were of moderate to low quality. CONCLUSIONS: Despite its well-recognized importance, research on interventions to improve life participation mostly consisted of pilot and feasibility studies and studies of low quality. Interventions were reported heterogeneously, limiting comparability, and were restricted to specific regions and cultures, limiting generalizability.

Parental report of early features of developmental coordination disorder: A qualitative study.

BACKGROUND: Developmental Coordination Disorder (DCD) is a neurodevelopmental condition usually diagnosed after five years of age. AIMS: To evaluate parent-reported early markers of DCD between birth and six years of age. METHODS AND PROCEDURES: In-depth semi-structured interviews were conducted with parents of twelve children diagnosed with DCD. Up to three interviews were performed per family. The interviews were then transcribed ad-verbatim and analyzed using an inductive thematic analysis approach. OUTCOMES AND RESULTS: The first theme 'Child-specific features' discusses the children's challenges in diverse developmental domains (motor milestones, activities of daily living, play and exploration, fatigue and sleep, participation, sensory processing, coping skills and friendships, and verbal skills), varying in severity for each child and each domain. The second theme 'Features in the context' discusses subtle markers in the direct environment of the children such as quests for explanations and therapy, specific participation choices, concerns by other caregivers, and the emergence of secondary consequences. CONCLUSIONS AND IMPLICATIONS: This study reports the presence of early features of DCD from the first year of life and suggests important topics to discuss with parents in the diagnostic process of DCD.

The impact of in-centre haemodialysis treatment on the everyday life of older adults with end-stage kidney disease: a qualitative study.

Background: Older adults with end-stage kidney disease experience a diminished ability to perform the activities of their daily life. For those living at home, the initiation of in-centre haemodialysis treatment (ICHD) carries a risk of cascading functional decline leading to early nursing home placement and mortality. Research on how older adults adapt to their newly impacted daily life is scarce. Methods: Individual semi-structured interviews were conducted using a purposeful maximum variation sample of older adult (≥65 years) ICHD patients living at home. Interviews were conducted between October and December 2018. Interview coding followed an inductive and broad-based approach. Thematic analysis was used to group meaning units into common themes and subthemes. Results: Twenty patients (12 females) were interviewed. Analysis resulted in two main themes and seven subthemes. The first main theme showed the impact of ICHD on everyday roles and functioning through four subthemes: a stepwise decline in daily activities, managing time, role changes and an incomplete retirement. The second main theme showed potential areas of remediation through three subthemes: the social environment, developing new daily activity patterns and meaningful activities and goals. Conclusions: The older adults experienced a process of adaptation that generally progressed from a phase of initial disruption towards a period of mere survival. Being able to accept a life on dialysis was intricately connected with the ability to perform activities that were personally meaningful. Early and continued support of meaningful activities may prove valuable in breaking or delaying the cycle of functional decline.

Exploring Work Absences and Return to Work During Social Transition and Following Gender-Affirming Care, a Mixed-Methods Approach: 'Bridging Support Actors Through Literacy'.

PURPOSE: Research on return to work (RTW) following transition-related gender-affirming care (GAC) is lacking. We aim to study the RTW outcomes and experiences of transgender and gender diverse (TGD) people during social and medical transition to understand their needs better and provide tailored support. METHODS: In this convergent mixed-methods study, the questionnaires of 125 employed TGD people, who took steps in transition (social and GAC), were analyzed for personal- and work characteristics, medical work absences, RTW, support at work, and health literacy. In-depth interviews were held with twenty TGD people to explore perceived facilitators and barriers to RTW. RESULTS: One hundred and nine participants reported an average of 38 sick days after GAC. The majority (90.2%) resumed their job at the same employer. Although TGD workers felt supported, their health literacy (55.1%) was lower compared to the general population. The qualitative data analysis revealed four major themes: (1) the need and access to information; (2) having multidisciplinary TGD allies; (3) the influence of the occupational position; (4) the precarious balance between work, life, and GAC. Especially participants with a low health literacy level experienced RTW barriers by struggling: (1) to find and/or apply information; (2) to navigate (occupational) health and insurance services. CONCLUSION: Our research has shown that RTW for TGD individuals is a multifaceted process, affected by personal factors, work-related elements, and the characteristics of the healthcare and social insurance system. Enhancing support for TGD people at work and their RTW requires a high need for centralized information and promoting health literacy while engaging relevant stakeholders, such as prevention services and employers.

General health and working conditions of Flemish primary care professionals.

BACKGROUND: The Quintuple aim explicitly includes 'health and wellbeing of the care team' as requirement for the care of patients. Therefore, we examined working conditions, work engagement and health status of professionals active in primary care in Belgium (Flanders), and how these are interrelated. METHODS: Data of the cross-sectional 'Health professionals survey of the Flemish Primary care academy' of 2020 were examined. We performed logistic regression analyses to study the relationship between working conditions and self-reported dichotomized health of primary care professionals (sample size = 1033). RESULTS: The majority of respondents (90%) reported having a good to very good general health and has a strong work engagement. Quality of employment was high, in particular regarding job security and supportive relations with colleagues, while less in terms of proper rewards and job career opportunities. Working as self-employee (vs. as salaried employee), and in a multidisciplinary group practice (vs. other organizational settings) were positively related to health. Work engagement and all dimensions of employment quality were related to general health, but work family balance, proper rewards, and perceived employability were independently positively related to self-reported health. CONCLUSION: Nine out of 10 Flemish primary care professionals working in diverse conditions, employment arrangements and organizational settings report good health. Work family balance, proper rewards, and perceived employability were important for primary care professionals' health, and could provide opportunities to further strengthen the job quality and health of primary care professionals.

The underpinning of meaningful activities by brain correlates: a systematic review.

Introduction: Engaging in meaningful activities contributes to health and wellbeing. Research identifies meaningfulness by analysing retrospective and subjective data such as personal experiences in activities. Objectively measuring meaningful activities by registering the brain (fNIRS, EEG, PET, fMRI) remains poorly investigated. Methods: A systematic review using PubMed, Web of Science, CINAHL, and Cochrane Library. Findings: Thirty-one studies investigating the correlations between daily activities in adults, their degree of meaningfulness for the participant, and the brain areas involved, were identified. The activities could be classified according to the degree of meaningfulness, using the attributes of meaningfulness described in the literature. Eleven study activities contained all attributes, which means that these can be assumed to be meaningful for the participant. Brain areas involved in these activities were generally related to emotional and affective processing, motivation, and reward. Conclusion: Although it is demonstrated that neural correlates of meaningful activities can be measured objectively by neurophysiological registration techniques, "meaning" as such has not yet been investigated explicitly. Further neurophysiological research for objective monitoring of meaningful activities is recommended.

Development of simple descriptions of the ICF Generic-30 Set in different languages: laying the foundation for an ICF-based clinical tool for Europe.

BACKGROUND: Functioning is considered a third indicator of health and a key outcome in rehabilitation. A universal practical tool for collecting functioning information is essential. This tool would be ideally based on the International Classification of Functioning, Disability and Health. AIM: To report the results of the development of country/language-specific versions of an ICF-based clinical tool in six European countries. DESIGN: Consensus process. SETTING: Expert conferences. POPULATION: Multi-professional group of rehabilitation professionals in six European countries. METHODS: 1) Developed an initial proposal by translating the published English-language version of the simple descriptions into the targeted language; 2) conducted a multi-stage consensus conference to finalize the descriptions; 3) employed a three-stage multi-professional expert panel translation back to English. The consensus conference model was modified for geographically large countries. RESULTS: Croatian, Flemish/Dutch, Greek, Polish, and Turkish versions were produced. CONCLUSIONS: The creation of the country/language-specific simple descriptions is a significant part of the "system-wide implementation of the ICF" initiative that will pave the way for the implementation of the ICF in national health systems. CLINICAL REHABILITATION IMPACT: The practical ICF-based clinical tool with country/language specific versions for standardized reporting of functioning will serve as a means of integrating functioning information in national health systems and additionally for monitoring the effects of rehabilitation interventions.

The Influence of Everyday Acoustic Environments on the Challenging Behavior in Dementia: A Participatory Observation Study in Nursing Homes.

Challenging behavior (CB) is a group of behaviors, reactions and symptoms due to dementia, which can be challenging for the caregivers. The study aims to research the influence of acoustics on CB in people with dementia (PwD). An ethnographic method was used to study the daily life of PwD in their nursing homes with a specific focus on how people react to everyday environmental sounds. Thirty-five residents were included in the sample based on purposeful, homogeneous group characteristics and sampling. Empirical data were collected using 24/7 participatory observations. The collected data were analyzed using a phenomenological-hermeneutical method: a naïve understanding, a structural analysis and a comprehensive understanding. The result shows that the onset of CB depends on whether the resident feels safe and is triggered by an excess or lack of stimuli. The excess or shortage of stimuli and whether and when it affects a person is personal. It depends on various factors, the person's state and the time of day, the nature of the stimuli, familiarity, or strangeness is also a determining factor for the onset and progression of CB. The results can form an essential basis for developing soundscapes to make the PwD feel safe and reduce CB.

Exploring readiness for implementing goal-oriented care in primary care using normalization process theory.

AIM: To use normalization process theory (NPT) to build a strategy for the implementation of goal-oriented care (GOC) in primary care in Flanders, Belgium. BACKGROUND: GOC is a possible approach to more coordinated and integrated care and tailors care to patients' personal life goals. The concept has gained interest among policy makers and researchers, but the main drivers for successful implementation are the primary healthcare professionals (PHCPs) who need to see added value of GOC in order to embed it into their daily practice. NPT, developed to understand the processes of implementing new ways of organizing care, offers a useful lens to understand adoption of GOC in primary care practice. METHOD: PHCPs (n = 131) who participated in a 2-hour community meeting on GOC were asked to complete the Normalization MeAsure Development survey. This 23-item survey is based on NPT and describes participants' views about how an intervention would impact their work, their expectations about it, and whether it could become a routine part of their work. FINDINGS: The NPT constructs coherence (sense-making work) and cognitive participation (relational work) showed positive tendency toward implementation of GOC. The participants had an initial understanding on GOC and there was much interest in supporting and start working with this approach. The other constructs collective action (operational work) and reflexive monitoring (appraisal work) will need further efforts to trigger implementation. A common ground is needed to integrate GOC as a common practice which can be achieved by intensive interprofessional collaboration.

Creating space to talk about patients' personal goals: experiences from primary care stakeholders.

BACKGROUND: To address the many challenges health systems and communities face, primary care is constantly searching for new strategies to improve quality of care. One of the strategies is to focus on patients' personal goals to direct the care process. To adopt an explicit focus on patients' personal goals, actions at different levels are required. As a first step in this process, this study aims to explore the experiences of primary care stakeholders (i.e., scholars, primary care providers, and policy makers) and develop a comprehensive understanding on the idea 'putting patients' goals first'. This will help to formulate suggestions about what these actions should include. METHOD: In this study, 41 primary care stakeholders participating in six focus groups between January 2020 and September 2020, were recruited via maximal variation purposive sampling. Data collection was done through an open-ended semi-structured interview guide. Focus groups were audio-recorded, transcribed verbatim, and analyzed following a phenomenological-hermeneutical philosophy of Lindseth and Norberg. RESULTS: All participants expressed a strong fundamental belief for putting patients' personal goals first. The primary care providers shared that they created space for patients' personal goals by letting them talk about their values and stories. They reported to integrate their medical expertise with patients' personal goals in order to develop a balanced relationship. In this context, they also talked about the importance of taking into account the perspectives of patients' significant others. Primary care providers also talked about how they used patients' personal goals as a guide in interprofessional collaboration. Scholars denoted that (future) care providers need more training to acquire competencies to discuss patients' personal goals. The providers and policy makers talked about organizational limitations in terms of time restrictions and the lack of registration systems to support a workflow oriented towards patients' personal goals. CONCLUSIONS: This study can be used to support the coherence of the development of different actions and strategies to get primary care stakeholders fully on board to support the adoption of patients' personal goals in care delivery at different levels. However, models of practice and policy plans are needed to work towards a person-centered integrated system.

Building an understanding of goal-oriented care through the experiences of people living with chronic conditions.

OBJECTIVE: To understand the concept of goal-oriented care (GOC) through the experiences of people with chronic conditions. METHOD: Interviews with people living with chronic conditions (n = 50) were analyzed in two ways. A deductive approach based on GOC attributes generated in a concept analysis on GOC: goal-elicitation, goal-setting, goal-evaluation, patients' context, and patients' needs and preferences. An inductive approach based on a thematic analysis using descriptive phenomenology. RESULTS: The phase of goal-elicitation was recognized by the participants, whereas goal-setting and goal-evaluation were experienced to a lesser extent. Regarding the underpinning attributes, mixed feelings were reported concerning the integration of the patient's context and the presence of their needs and preferences throughout the care process. The inductive analysis revealed specific attention to informing patients about their condition and treatment options and discussing goals in interprofessional collaboration. CONCLUSION: Goal-elicitation was already present and seems to be a good foundation for GOC. More attention should be given to goal-setting and goal-evaluation. PRACTICE IMPLICATIONS: Developing guidance by means of a workflow, tools, or questions might support people with chronic conditions and providers to underpin the entire care process with patients' personal goals.

IMBA-ICF linking by integrating consensus methods: How group consensus of experts can contribute to in-depth linking of instruments to the ICF.

BACKGROUND: A frame of reference is needed to increase the comparability of vocational rehabilitation assessment instruments and the interpretation of their results. The International Classification of Functioning, Disability and Health (ICF) is a relevant framework, and when linking rules are used, items from existing assessment instruments can be linked to the appropriate categories as described in the ICF. OBJECTIVE: To develop an adapted linking methodology in which experts are involved by means of the application of consensus methods and to transfer this result in a step-by-step set of guidelines, supporting researchers and professionals, linking complex instruments to the ICF. METHODS: The main researcher developed the initial linking of the Integration von Menschen mit Behinderungen in die Arbeitswelt (IMBA) to the ICF by rigorously applying the refined ICF linking rules. To validate this linking, the Delphi and nominal group technique was integrated through different steps, and experts were involved in the process. The method section describes the linking process chronologically with focuses on the used approach, the involvement of experts, and the processing of the output. RESULTS: The results are presented in a 7-step set of guidelines describing the chronological process from the initial to the validated linking. These guidelines describe the core elements in the application of the linking rules and consensus methods in a manual for researchers who are interested in linking complex instruments to the ICF by involving experts. CONCLUSIONS: The Delphi and nominal group technique can be successfully integrated in the linking process, making it possible to involve experts in linking complex instruments to the ICF. A homogeneous composition of the expert panel in terms of knowledge, a heterogeneous composition in terms of setting, a rigorous and repeated application of the linking rules, and structured processing of the output are essential to achieve a valid linking.

The role of a socially assistive robot in enabling older adults with mild cognitive impairment to cope with the measures of the COVID-19 lockdown: A qualitative study.

BACKGROUND: During the COVID-19 pandemic, mandatory containment measures led to lockdowns and severely diminished social interaction, with older adults being one vulnerable group. Socially assistive robots (SARs) could prove to be an effective intervention. OBJECTIVES: To explore the experiences of older adults with mild cognitive impairment (MCI) with a SAR during the first lockdown in Belgium. METHODS: Inductive thematic analysis was used. After a two-week interaction period with robot James®, semi-structured interviews were conducted. RESULTS: Four people were interviewed (median: 86 years; range: 70-90 years; 2 men, 2 women). Four themes were identified. The first theme described the robot as a companion, alleviating feelings of loneliness and social isolation. The second theme explored the robot in light of meaningful activity. The third theme detailed the technical aspects of the robot and the fourth theme described notable barriers and areas of improvement. CONCLUSION: The study demonstrated the potential of SARs during the first lockdown period in Belgium. The robot proved to be promising in terms of alleviating feelings of loneliness and social isolation. It was found to be both motivating and facilitating in terms of meaningful activity. SIGNIFICANCE: The study provided valuable insights for the care of lonely and occupationally deprived older adults.

How do people living with chronic conditions and their informal caregivers experience primary care? A phenomenological-hermeneutical study.

AIMS AND OBJECTIVES: Gaining insight in how people living with chronic conditions experience primary healthcare within their informal network. BACKGROUND: The primary healthcare system is challenged by the increasing number of people living with chronic conditions. To strengthen chronic care management, literature and policy plans point to a person-centred approach of care (PCC). A first step to identify an appropriate strategy to implement PCC is to gain more insight into the care experiences of these people and their informal caregivers. DESIGN: A phenomenological-hermeneutical philosophy is used. The study is in line with the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ). METHOD: In-depth, semi-structured interviews with people living with chronic conditions and informal caregiver dyads (PCDs) (n = 16; 32 individuals) were conducted. An open-ended interview guide was used to elaborate on the PCDs' experiences regarding primary care. A purposive, maximal variation sampling was applied to recruit the participants. RESULTS: Based on sixteen PCDs' reflections, ten themes were identified presenting their experiences with primary care and described quality care as listening and giving attention to what people with chronic conditions want, to what they strive for, and above all to promote their autonomy in a context wherein they are supported by a team of formal caregivers, family and friends. CONCLUSION: To meet the PCDs' needs, self-management should be addressed in an interprofessional environment in which the PCD is an important partner. The findings may facilitate a shift to encourage PCDs in their strengths by enabling them to share their personal goals and by working towards meaningful activities in team collaboration. RELEVANCE TO CLINICAL PRACTICE: Three strategies-self-management support, goal-oriented care, and interprofessional collaboration-have been suggested to improve the PCDs' primary care experiences. These strategies could guide nursing practice in using more and improve high-quality nursing care.

Personalised rehabilitation to improve return to work in patients with persistent spinal pain syndrome type II after spinal cord stimulation implantation: a study protocol for a 12-month randomised controlled trial-the OPERA study.

BACKGROUND: For patients with therapy-refractory persistent spinal pain syndrome type II (PSPS-T2), spinal cord stimulation (SCS) may serve as an effective minimally invasive treatment. Despite the evidence that SCS can improve return to work (RTW), only 9.5 to 14% of patients implanted with SCS are effectively capable of returning to work. Thus, it seems that current post-operative interventions are not effective for achieving RTW after SCS implantation in clinical practice. The current objective is to examine whether a personalised biopsychosocial rehabilitation programme specifically targeting RTW alters the work ability in PSPS-T2 patients after SCS implantation compared to usual care. METHODS: A two-arm, parallel-group multicentre randomised controlled trial will be conducted including 112 patients who will be randomised (1:1) to either (a) a personalised biopsychosocial RTW rehabilitation programme of 14 weeks or (b) a usual care arm, both with a follow-up period until 12 months after the intervention. The primary outcome is work ability. The secondary outcomes are work status and participation, pain intensity, health-related quality of life, physical activity and functional disability, functional capacities, sleep quality, kinesiophobia, self-management, anxiety, depression and healthcare expenditure. DISCUSSION: Within the OPERA project, we propose a multidisciplinary personalised biopsychosocial rehabilitation programme specifically targeting RTW for patients implanted with SCS, to tackle the high socio-economic burden of patients that are not re-entering the labour market. The awareness is growing that the burden of PSPS-T2 on our society is expected to increase over time due to the annual increase of spinal surgeries. However, innovative and methodologically rigorous trials exploring the potential to decrease the socio-economic burden when patients initiate a trajectory with SCS are essentially lacking. TRIAL REGISTRATION: ClinicalTrials.gov NCT05269212. Registered on 7 March 2022.

The Impact of Hypermobile "Ehlers-Danlos Syndrome" and Hypermobile Spectrum Disorder on Interpersonal Interactions and Relationships.

Background: People with Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are hampered in their social participation, especially in the social relationships they have. Objective: The aim of this study is to research the impact of hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) on interpersonal interactions and relationships. Methods: A phenomenological hermeneutic study was performed. Semi-structured interviews were used to explore the experiences of 11 participants. Results: Four themes emerged from the data analysis. (1) people with hEDS or HSD can no longer do what they want to do and that affects their identity, (2) people with hEDS or HSD have to find a balance in the amount of activities they participate in, (3) having hEDS or HSD influences how to ask for, accept and give help, and (4) Relationships are affected in persons with hEDS or HSD. As well as changes in the social network, different types of relationships are influenced by the disease, including relationship with their partner, their children, their friends, strangers, fellow-sufferers and health care professionals.