Fear, coping and support- from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia.

PURPOSE: To describe experiences of fear, coping, and support in 10-17-year-old children under treatment for acute lymphoblastic leukaemia (ALL). METHODS: A longitudinal descriptive qualitative design was adopted. Ten children participated in one to three interviews each (24 interviews in all). Interviews were analysed using a matrix-based qualitative method. RESULTS: The variety of fears described related to uncertainty, pain and medical procedures, bodily changes and loss of control, complications, professionals' attitudes, affected school results, and social isolation. Children used various strategies to deal with fear: some more general, to cope with the whole situation, and others more related to specific events such as treatment and tests. The most reported strategies we labelled Accepting the situation, Positive thinking, and Being an active agent. Less favourable strategies were also reported. Health care professionals, families, and friends offered valuable, but different kinds of, support. CONCLUSIONS: Children aged 10 to 17 undergoing treatment for ALL experience various fears. Each experience is individual and changes over time, but there are common patterns. Most children used problem-solving or emotional-regulation strategies, but withdrawal was also reported. Even children who can deal with fear need support from their health care professionals, families, and friends.

Adaptation, Translation, and Validation of a Patient-Reported Experience Measure for Children and Young People for the Canadian Context.

BACKGROUND: Patient-reported experience measures (PREMs) evaluate children's and young people's (CYP) perceptions of care. An important PREM developed with and for children was created in London, UK. Given the absence of similar North American instruments, we aimed to adapt, translate, and linguistically validate this instrument for use in a Canadian pediatric outpatient setting. METHODS: A qualitative design was used, involving CYP and their parents/caregivers. Phase 1 entailed the English survey adaptation using think-aloud testing, revision, and cognitive testing. Phase 2 involved translation into French, revision and back-translation, and cognitive testing. Phase 3 encompassed a cross-validation of the English and French versions of the adapted instrument. RESULTS: Fifty-five children in 3 age groups (8-11y, 12-13y, 14-16y) participated in creating the Canadian PREM. In Phases 1 and 2, 41 children participated in reviewing and updating specific questions in the instrument, resulting in adjustments and revisions based on their feedback. In Phase 3, 14 bilingual children linguistically validated the PREM instrument. CONCLUSIONS: This study reports the development of the first Canadian PREM specifically tailored to children. By incorporating the perspectives and preferences of CYP in clinical practice, this approach has the potential to amplify the delivery of patient-centered care for this vulnerable population and ensure that the needs and voices of CYP are acknowledged. LEVEL OF EVIDENCE: V, Therapeutic.

"I have to obey my pain" - children's experiences of pain burden in cerebral palsy.

PURPOSE: To explore pain experiences of children with cerebral palsy, and how it influences their everyday life. METHOD: Fourteen children with CP between eight and seventeen years old were included, using a purposeful sampling strategy. They had different experiences of pain, and different degrees of physical and cognitive impairments. Sixteen individual semi-structured interviews were carried out, and analyzed using inductive thematic analysis. RESULTS: Data analysis resulted in the main theme "I have to obey my pain" and four themes were identified. Experiences regarding pain varied ("My pain is mine alone"). Both pain itself and the use of cognitive strategies to cope with pain involved a mental struggle ("Pain brings me down"). The children had to make adjustments to manage their pain ("I want to participate, but I have to rest"). The most important help was to be understood, but adults also provided valuable help with interventions like stretching, medication and adjustment of activity levels ("Others can help me"). CONCLUSION: Pain was a determining feature in the lives of these children with CP. The wide variety of experiences and challenges emphasized the need for tailored management strategies developed together with each child and their parents.IMPLICATIONS FOR REHABILITATIONChildren with cerebral palsy had varied experiences of pain, and health professionals need to tailor their pain management approaches to the individual child.Health services should offer pain education to expand children's repertoire of pain management strategies.When a child's pain influences their daily activities, health services must ensure that the school is informed of the child's situation, and able to make necessary adjustments.Health professionals should strive to include children's own descriptions whenever possible to make sure children feel heard and believed.Even children with communicative and cognitive impairments were able to self-report when necessary adjustments in the communication situation were made.

"Pain is one piece of a complex jigsaw puzzle" - experiences of raising a child with cerebral palsy who has pain.

Purpose: To explore experiences of parenting a child with CP and pain.Method: Fourteen mothers and one father of children (9-16) with CP were included. All children had pain regularly, but the frequency and intensity of their pain experiences varied. Their motor function varied from GMFCS level I to V. Cognitive abilities varied from normal to moderate cognitive deficits. All children could express themselves verbally. Semi structured individual interviews were carried out, and results were developed using inductive thematic analysis.Results: The analysis resulted in the main theme "My child's pain is just one piece of a complex jigsaw puzzle". The main theme was developed by four mutually exclusive, but related themes: "My child's struggle burdens me", "Pain and CP direct our everyday life", "I want to be in control, but cannot always be" and "We are the only ones who understand the complexity".Conclusion: Parents of children with CP experience pain as one aspect of a bigger picture. They need help and support to cope with their child's pain, and professional helpers need to address the complexity pain is a part of.IMPLICATIONS FOR REHABILITATIONParents of children with cerebral palsy (CP) experience their child's pain as one piece in a jigsaw puzzle, and counseling needs to address the complexity rather than the separate parts of the picture.Health professionals should support parents in evaluation and management of their child's pain, as a feeling of competence in pain management is important to reduce parental stress.Health professionals should inform themselves about the life situation of parents whose child with CP has pain, and encourage them to seek practical support and apply for relevant support schemes that can make their everyday life easier.Parents of children with CP should be encouraged to take part in a diagnosis-specific support group, where they can meet with others in a similar situation, in order to reduce their feeling of being alone with their challenges.

Translation, cultural adaptation and validation of a patient-reported experience measure for children.

BACKGROUND: There is no national, validated, generic patient-reported experience measure (PREM) for children under 15 years of age in Sweden. A recent cross-sectional study found no consensus in how children's voices are heard in paediatric health care, as well as a lack of validated questionnaires. AIM: The aim of this study is to translate, adapt and validate the six versions of the Children's and Young People's PREM for use in a Swedish health care context. DESIGN: An exploratory sequential mixed-method design including cognitive interviews and content validity index (CVI) was used. The interviews focused on evaluating children's understanding of the questionnaire, and the CVI was used to further adjust the relevance of the questionnaire. PARTICIPANTS: A convenience sample of 62 children participated in the cognitive interviews and an additional convenience sample of 42 children was included in the CVI testing. The children, aged 8-16 years, were attending routine visits at paediatric departments in a county hospital and a children's hospital in the mid-Sweden region between October 2020 and June 2022. RESULTS: The translation, adaptation and validation process identified several issues regarding the understanding of the questionnaire in a Swedish context. Adaptations were made based on issues related to context, wording and the structure of the questions. CVI testing resulted in the removal of 3-10 questions in each of the different versions of the questionnaire. CONCLUSION: The study has resulted in six face- and content-validated Swedish versions of the questionnaire ready for pilot testing. Although the versions of the original questionnaire were developed in collaboration with children in the United Kingdom, this did not mean that they could automatically be used in a Swedish health care context. This study confirms the importance of a rigorous process of adaptation and validation to ensure quality and applicability to children accessing health care in different countries. PATIENT OR PUBLIC CONTRIBUTION: Children's views have guided the development of the original instrument and its adaptation to the Swedish health care context. Due to the strong patient involvement in the process of developing the Swedish versions of the questionnaire, the research group made a pragmatic decision to have no other patient contribution in the study.

A lifelong struggle for a lighter tomorrow: A qualitative study on experiences of obesity in primary healthcare patients.

AIM: To describe experiences of living with obesity before the start of a group-based lifestyle intervention. BACKGROUND: Obesity is a chronic disease that affects a person's physical and psychological health. Increased knowledge of experiences of living with obesity is required. DESIGN: A qualitative study with a descriptive design. METHODS: Semi-structured individual interviews with 17 participants living with obesity (Body Mass Index 32-49) were conducted between October and November 2019. The interviews were analysed using qualitative content analysis. The COREQ checklist was followed. RESULTS: The analysis resulted in one main theme: Struggling for a lighter tomorrow and three subthemes: Suffering, Resilience and Need for support in making changes. For the majority of the participants, living with obesity was a lifelong struggle involving suffering on different levels. Yet despite this, the participants had not given up and hoped for a better life. They showed a degree of resilience and motivation, and a perceived ability to achieve lifestyle changes. However, there was a pronounced need for support to help them achieve this. CONCLUSION: Living with obesity is complex and carries a risk of medical complications as well as psychosocial suffering. Healthy lifestyle habits to achieve better health and to lose weight should be encouraged, taking patient resources into account. Patients also need help in handling weight stigmatisation, and both healthcare professionals and society must engage with this. RELEVANCE TO CLINICAL PRACTICE: Obesity is a chronic disease, and patients need ongoing support. Therefore, care for patients with obesity in primary health care must be further developed. Patient resources and strengths have to be acknowledged and encouraged in the process of helping them adopt healthy lifestyle habits. The findings of this study can contribute to ending weight stigmatisation by increasing the knowledge of living with obesity.

Interventions for children with deafblindness-An integrative review.

BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately 1 in 27 000 new-borns worldwide. For individuals with deafblindness, lifelong interventions and support are needed to be able to develop communication, be active and preserve a good quality of life. Because little is known about what kind of support and interventions can be offered to children with deafblindness, the aim was to summarize and disseminate research findings regarding this topic. METHODS: Integrative review principles were employed. Systematic searches in eight databases and additional manual searches were conducted. The inclusion criteria were as follows: original studies published between 2000 and 2021 examining either interventions for children between 0 and 18 years of age with deafblindness or interventions aimed at children with deafblindness but offered to their relatives or professionals working with them. Studies on support for family members were also sought. Study characteristics were described, and key findings were synthesized into categories based on their similarities. RESULTS: Of the 6268 identified original studies, 32 were included. The key outcomes from the included studies were synthesized into three categories, with two categories illustrating the goal/intention of the intervention (social interaction and communication, motivation and participation) and one focusing on or identifying the action taken to benefit the child (adaptation of the educational environment). Social interaction and communication was the dominant category, covering 24 of the 32 included studies. CONCLUSIONS: This review concludes that there are a limited number of evaluated interventions for children with deafblindness. In many cases, the interventions were adapted to the individual child's needs, and most of them were found within the area of social interaction and communication. More research is needed to strengthen the level of evidence for interventions for children with deafblindness.

Interventions for adults with deafblindness - an integrative review.

PURPOSE: To compile the current research on interventions for rehabilitation aimed at adults (aged 18-65 years) with deafblindness. MATERIALS AND METHODS: A comprehensive search was conducted in eight databases. An additional manual search was also carried out. A total of 7049 unique references were initially identified, and after screening, 28 original scientific articles were included. The results from these articles were categorized based on limiting consequences of deafblindness: communication, orientation and to move around freely and safely and access to information, as well as to psychological adaptation to deafblindness. RESULTS: Fourteen of the included articles had their main focus on access to communication, ten on orientation and the ability to move around feely and safely, three on the opportunity to gain access to information, and one related to psychological adaptation to deafblindness. Most articles focused on technical devices, of which one-third were single case studies. CONCLUSION: There is a limited number of evaluated interventions for people with deafblindness. Most of the existing studies involved one to five participants with deafblindness, and only few studies involved a larger number of participants. More research with a larger number of participants are needed, which could be facilitated by international cooperation between practitioners and researchers.

Public health nurses' experiences working with children who are next of kin: a qualitative study.

BACKGROUND: There are a substantial number of children who are the next of kin of parents suffering from illness or substance abuse. These children can experience emotional and behavioral problems and may need support from professionals. In Norway, the specialist health service in hospitals is required to have a designated practitioner in each department to ensure support for and follow up of children who are next of kin; however, this is not regulated by law in the health care in the municipalities. The aim of this study was to explore public health nurse's experiences working with children who are next of kin. METHODS: Qualitative interviews were conducted with 10 public health nurses working in the child health clinic and the school health service in four municipalities. Data were analysed using content analysis. Reporting of this study is conducted in accordance to COREQ's checklist. RESULTS: The analysis resulted in one main theme: 'Lack of guidelines and routines among public health nurses working with children who are next of kin'. The main theme consisted of four categories: (1) identifying children who are next of kin are incidental; (2) public health nurses must be observant and willing to act; (3) communication is an important tool; and (4) follow up over time is not always provided. CONCLUSION: The public health nurses experienced uncertainty concerning how to identify and follow up children who are next of kin but were vigilant and willing to act in the children's best interest. Doing so necessitated collaboration with other professionals. The need for guidelines around the role and responsibilities for the public health nurse were emphasized. The knowledge provided by the current study offers valuable insight into strengths and limitations in the support of children who are next of kin and can inform stakeholders in organizing sustainable support for this group.

Pain burden in children with cerebral palsy (CPPain) survey: Study protocol.

Pain is a significant health concern for children living with cerebral palsy (CP). There are no population-level or large-scale multi-national datasets using common measures characterizing pain experience and interference (ie, pain burden) and management practices for children with CP. The aim of the CPPain survey is to generate a comprehensive understanding of pain burden and current management of pain to change clinical practice in CP. The CPPain survey is a comprehensive cross-sectional study. Researchers plan to recruit approximately 1400 children with CP (primary participants) across several countries over 6-12 months using multimodal recruitment strategies. Data will be collected from parents or guardians of children with CP (0-17 years) and from children with CP (8-17 years) who are able to self-report. Siblings (12-17 years) will be invited to participate as controls. The CPPain survey consists of previously validated and study-specific questionnaires addressing demographic and diagnostic information, pain experience, pain management, pain interference, pain coping, activity and participation in everyday life, nutritional status, mental health, health-related quality of life, and the effect of the COVID-19 pandemic on pain and access to pain care. The survey will be distributed primarily online. Data will be analyzed using appropriate statistical methods for comparing groups. Stratification will be used to investigate subgroups, and analyses will be adjusted for appropriate sociodemographic variables. The Norwegian Regional Committee for Medical and Health Research Ethics and the Research Ethics Board at the University of Minnesota in USA have approved the study. Ethics approval in Canada, Sweden, and Finland is pending. In addition to dissemination through peer-reviewed journals and conferences, findings will be communicated through the CPPain Web site (www.sthf.no/cppain), Web sites directed toward users or clinicians, social media, special interest groups, stakeholder engagement activities, articles in user organization journals, and presentations in public media.

Living an ordinary life - yet not: the everyday life of children and adolescents living with a parent with deafblindness.

INTRODUCTION: The family life of people living with one family member with deafblindness has been sparsely described. PURPOSE: The aim of the study was to explore how children experience their everyday family life when having a parent with deafblindness. METHODS: An explorative study in which data have been collected by qualitative interviews of children. Qualitative content analysis has been used for analysing the data. RESULTS: Overall theme; Living an ordinary life-yet not, is based on four categories with subcategories. A family like any other describes: Having the same family life as their friends, Acting like other children and It is what it is. Different everyday life describes: Acknowledging differences, Adjusting to the parent's needs and Financial strain. Being there for the parent describes: Helping the parent and Protecting the parent from harm. Being emotionally affected describes: Feelings of frustration, Feelings of compassion and Need for support. CONCLUSION: Children as relatives of parents with deafblindness have been given a voice. The children live an ordinary life, but at the same time a different ordinary life. Professionals need to take the child and their needs into account when support is given.

Experiences of rehabilitation services from the perspective of older adults with dual sensory loss - a qualitative study.

PURPOSE: To describe the rehabilitation service experiences of older adults with dual sensory loss (DSL). METHODS: Twenty older adults aged ≥65 years with DSL participated in semistructured interviews. Inductive qualitative content analysis was conducted. RESULTS: The participants' experiences were classified into three main categories: 1. Maintaining and regaining function included experiences regarding interventions compensating for loss of function and medical corrections; 2. Mastering the situation described the individuals' competence of DSL, skills acquisition and taking control; and 3. Delivery of rehabilitation services included experiences of encounters with professionals, their attitudes and the organizational impact on accessibility and collaboration. CONCLUSIONS: It was important for participants to regain function and compensate for loss in function and to meet others in group rehabilitation. The professionals' attitudes were an important factor that affected the participants' approach to rehabilitation services. Rehabilitation services mainly focused on either VL or HL, not DSL. Based on the participants' experiences, the rehabilitation services seemed to contribute to the older adults' well-being, participation in activities and life roles, which is consistent with the WHO's definition of healthy ageing. The findings can contribute to the development of rehabilitation services for older adults with DSL to meet the diversity of these individuals' needs.

Health-related quality of life after Nuss procedure for pectus excavatum: a cross-sectional study.

OBJECTIVES: Pectus excavatum (PE) can cause both physical and psychosocial symptoms and affect patients' health-related quality of life. Previous international studies have shown that the Nuss procedure increases both self-esteem and body image. The aim of the study was to evaluate the health-related quality of life in patients who have undergone the Nuss procedure for PE. METHODS: The study had a cross-sectional multicentre design. All patients (N = 420) who underwent the Nuss procedure for PE in 3 cardiothoracic departments in Sweden from 2000 to 2019 were invited to answer the RAND-36 and Nuss Questionnaire modified for adults. Genders were compared using the Mann-Whitney U-test. Patients were divided into groups based on age at time of surgery (<20, 20-30 or >30 years) and analysed by the Kruskal-Wallis H-test with post-hoc analyses. RESULTS: A total of 236 patients returned the questionnaires; 82.2% were males. Men scored significantly better on the modified Nuss Questionnaire total (P = 0.01) and psychosocial (P = 0.02) subscales. Patients who had surgery at <20 years of age had significantly better scores on the same scales (P = 0.007 and 0.006, respectively) compared to patients aged 20-30 years at the time of surgery. However, no significant difference was seen in comparison with patients >30 years. Patients who had their bar removed had significantly better values on both scales. CONCLUSIONS: Male gender, young age at surgery and bar removal seem to be associated with better health-related quality of life after the Nuss procedure for PE.

Young children's experiences of support when fearful during treatment for acute lymphoblastic leukaemia-A longitudinal interview study.

AIM AND OBJECTIVES: To describe young children's experiences of valuable support in managing their fears about treatment for acute lymphoblastic leukaemia. The focus was specifically on support from parents and healthcare professionals. DESIGN: The study had a qualitative descriptive longitudinal design. METHODS: The study analysed 35 interviews with 13 children at three different times during their treatment period. Data were analysed using a matrix-based method. The Consolidated criteria for reporting qualitative research (COREQ) guidelines have been followed. RESULTS: Parents and healthcare professionals provide important support to children undergoing treatment for acute lymphoblastic leukaemia, although their roles differ. Children valued their parents' closeness and advocacy, being able to participate in their own care, and being given pain relief during procedures known to create pain. Valued support from healthcare professionals changed over time, from providing information and showing the tools that would be used in procedures, to paying attention to the child's needs and desires. It was more important for children to be able to choose between different alternatives in medical procedures than deciding on major treatment issues.

How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare: A cross-sectional study.

BACKGROUND: In January 2020, the United Nations Convention on the Rights of the Child was incorporated into Swedish law. According to Swedish regulations, patients are to be given the opportunity to participate in quality improvement. Sometimes, the patients are children who have the right to be heard on matters concerning them, such as their experience of a hospital visit. OBJECTIVE: This study aimed to describe how Swedish paediatric departments facilitate children's voices on their healthcare experiences and how their perspectives are taken into account in quality improvement work. METHODS: This study has a descriptive cross-sectional design. Data were collected using a study-specific survey sent by e-mail to all the heads of the paediatric departments in Sweden, with both inpatient and outpatient care. The response rate was 74% (28 of 38 departments). RESULTS: The results demonstrated a variation in questionnaires used and to whom they were targeted; less than half of the participating departments reported having had questionnaires aimed at children. The results also indicated a major variation in other working methods used to allow children to voice their experiences in Swedish paediatric departments. The results indicate that the national co-ordination in facilitating the children's rights to be heard on their experiences in healthcare organisations can be improved. CONCLUSION: Further research is required to ascertain which method is the most practically effective in paediatric departments, in what way children prefer to be heard regarding their experience of and perspectives on healthcare, and what questions need to be asked. A validated national patient-reported experience measure developed with and aimed at children could provide them with equal opportunities to voice their experiences in healthcare, regardless of their diagnoses or which paediatric department they visit.

Community-based support for children who are next-of-kin for a parent experiencing illness or disability - a scoping review.

INTRODUCTION: Children who are next-of-kin, for a parent who experience illness or disability, need support. In Norway, guidelines, routines and structured approaches in the community health services are lacking regarding involving children in the care of a parent and for services when supporting children as next-of-kin. Additionally, no existing international review has focused on support from community health and social services for children who are next-of-kin to a parent regardless of the specific illness or disability. AIMS: This scoping review examined the current knowledge regarding the types of community health and social services support to children 0 to 17 years old living with a parent experiencing illness or disability. The review also identified children's support preferences and needs. METHODS: The scoping review involved five stages; identifying research question; identifying relevant articles; selecting articles; charting the data and finally, collating, summarizing and reporting the results. RESULTS: Articles which included community health and social services interventions and children's preferences or needs for support were included. The foci of interventions included preventive education, peer support, psychosocial support, and interventions focusing on family communication and recovery planning. Articles focusing on children's preferences or need for support described their wish to be recognized as a next-of-kin, having someone to talk to and professional and peer support. CONCLUSION: The review highlighted the importance of children receiving support according to their preferences. It is important to elicit children's voices, to ensure community health and social services are developed for and tailored to this population.

The professional relationship forms the base: Swedish child health care nurses' experiences of encountering mothers exposed to intimate partner violence.

PURPOSE: This study aimed to explore child health care nurses' clinical experiences from encounters with mothers exposed to intimate partner violence (IPV), as little research has explored this topic. METHOD: Nine child health care nurses from two Swedish regions were interviewed. The interviews were analysed using thematic analysis. RESULTS: The narratives depicted the nurses' strong commitment to, and professional relationship with, the exposed mothers. The experience of working as a nurse and having encountered IPV in clinical practice made the nurses more confident, which impacted their performance and attitude towards this topic. The ability to uphold the professional relationship was threatened by lack of support and interprofessional collaborations. CONCLUSIONS: The professional relationship was central to the encounters, yet could impose an emotional burden on the nurses. While the nurses wanted to improve their knowledge of the process around the mother and child, they were happy to pass the primary responsibility over to other professionals. The findings highlight the challenge in establishing sustainable support for nurses, and building a transparent collaboration process between the health care sector and the social services, serving the well-being and safety of the mother and child.

Translation and psychometric evaluation of the Swedish versions of the Nuss Questionnaire modified for Adults and the Single Step Questionnaire.

BACKGROUND: Pectus excavatum (PE) is the most common congenital chest wall deformity. Most individuals with PE suffer from psychosocial problems, with low self-esteem and poor body image. Correctional surgery for PE is available, the most widely used is the Nuss procedure. The Nuss procedure has previously been reported to improve self-esteem, body image and health-related quality of life (HRQoL). To assess HRQoL among individuals with PE, the Nuss Questionnaire modified for Adults (NQ-mA) and Single Step Questionnaire (SSQ) has been developed. The aim of the current study was to translate and culturally adapt NQ-mA and SSQ to fit a Swedish context, and to evaluate the psychometric properties, and validate the culturally adapted versions. METHODS: Individuals who had undergone the Nuss procedure for pectus excavatum were invited to participate in a multicentre study with cross-sectional design. HRQoL was assessed by NQ-mA, SSQ and RAND-36. Psychometric properties for NQ-mA and SSQ were evaluated by content validity index and construct validity (exploratory factor analysis, confirmatory factor analysis, and inter-scale correlations). Known-groups validity, as well as floor and ceiling effects, were evaluated. Internal consistency reliability was examined using Cronbach's alpha. RESULTS: In total 236 individuals participated in the study. Content validity index for NQ-mA showed satisfactory results, except for two items. Factor analysis for NQ-mA suggested a two-factor model, with exclusion of two items. Subscales correlated adequately with RAND-36's domains. Known-groups validity for NQ-mA demonstrated high sensitivity for between-group differences. Ceiling effects were present in several items. Cronbach's alpha for NQ-mA was .89. Confirmatory factor analysis for SSQ resulted in a three-factor model, with exclusion of five items. However, this model was shown to be unstable through further exploratory factor analysis testing, and no further psychometric tests were conducted for SSQ. CONCLUSION: The 10-item Swedish version of NQ-mA was shown to be valid for research and clinical assessment of HRQoL in individuals with pectus excavatum. The Swedish version of SSQ requires revision of items before further validation can be performed.

"I can manage the challenge" - a qualitative study describing experiences of living with balance limitations after first-ever stroke.

Purpose: To describe experiences of living with balance limitations after first-ever stroke. Materials and methods: This study has a qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men. Their mean age was 77 years and the mean time since stroke was 15 months. Stroke survivors who were able to walk outdoors with or without a walking aid and who were independent in toileting and dressing were invited to participate. Semi-structured individual interviews were performed. An inductive qualitative content analysis of the manifest and latent content was conducted. Results: The results are presented in two themes illustrating the latent content of the data, "Feeling dizzy and unstable is a continuous challenge" and "Feeling confidence despite dizziness and unsteadiness", and seven categories illustrating the manifest content: Limitations in daily life; Being emotionally affected; The need for physical support; Everything takes time; I can still manage; Feelings of acceptance; and Finding individual solutions. Conclusions: All participants experienced the balance limitations as a continuous challenge in their everyday life, yet they also felt confidence. They had to some degree adapted their activities and were able to manage their daily life.

The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2.

Purpose: This study aimed to explore lived experiences with working life from the perspective of people with deafblindness due to Usher syndrome type 2 (USH2). Background: A limited number of studies have explored working life of people with Usher syndrome. One study of individuals with USH2 showed that work active reported significantly better psychological health compared to non-working individuals. Methods: Seven participants aged 38-50 years with USH2 participated in interviews analysed by interpretative phenomenological analysis. Results: The analyses yielded four themes showing that work is a source of satisfaction and a commitment that needs to be balanced. It is also associated with facing limitations and feelings of uncertainty. Conclusion: Based on the psychology of work model we have demonstrated that work is associated with social connectedness, self-determination and a source of improved health outcomes. There are however also potential health hazards in people with USH2, indicating a need for balance between individual needs and resources, and an adapted environment, for maintaining or regaining health for actively working people with USH2.