| 1. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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Knowledge, skills and information needs on older residents’ hearing loss and hearing aids : Translation and adaptation of a Norwegian instrument
- 2022
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Konferensbidrag (refereegranskat)abstract
- Objective: The objective with the project is to find a valid and culturally appropriate instrument for measuring the professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. Such an instrument could optimally be used in clinical praxis, as well as in research, for cross-sectional studies and for measuring change related to educational interventions.Materials: The Norwegian instrument Knowledge, skills and information needs on residents’ hearing loss and hearing aids was identified in the literature. Its content was, by the research group regarded as relevant in a Swedish setting, although some cultural adaptations seemed to be necessary.Methods: The translation and cultural adaptations were performed in line with the International Society For Pharmacoeconomics and Outcomes Research (ISPOR) Task Force For Translation and Cultural Adapation, as outlined below:1. We first asked one of the original authors for permission to translate the instrument.2. Two of the authors (KB and MB) individually translated the content of the instrument. Their first language is Swedish, but both are familiar with the Norwegian language.3. The other authors individually and together checked the translations and judged whether the statements were comprehensible in Swedish, and made necessary cultural adaptations. For example, the nursing home settings, and job types within this sector are not identical in the two countries.4. An independent person, with knowledge of both Swedish and Norwegian (Norwegian being the first language), but with no previous knowledge of the instrument made a back-translation. This person had good knowledge of the setting, being a professor in geriatrics.5. The authors compared the original version of the instrument with the back-translated version and discussed some inconsistences with the first author of the original instrument, before we all agreed on a first preliminary Swedish version.6. 12 professionals having audiological competence, experience of nursing older people or teaching in nursing piloted the first preliminary Swedish version. They suggested some reformulations of questions and responses, which were discussed and decided on within the research group.7. The next step is to test the preliminary Swedish version of the instrument, which will take place during the winter of 2019-2020. A sample of professionals working in different nursing homes in two Swedish counties will be invited to participate. The plan is to include 400 professionals. The sample size is based on an optimal sample for performing a factor analysis as part of the assessment of the psychometric properties of the preliminary Swedish version. It also allows cross-sectional sub-analyses, based on different groups of professionals and level of nursing home.8. The project will be presented in a scientific journal, and used in a future intervention study. The instrument can also be used in clinical improvement work.Conclusion: The results are promising. To the best of our knowledge, there is no Swedish instrument available for measuring professionals' knowledge, skills and information needs on older residents’ hearing loss and hearing aids. It seems necessary to have such an instrument, as the number of older people increases in Sweden, as well as worldwide. Impaired hearing, as well as assistive needs increase with age, and thus it is of great importance to ensure that professionals working with older people have sufficient knowledge to assist them.
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| 2. |
- Nordlind, Anna, 1972-, et al.
(författare)
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How paediatric departments in Sweden facilitate giving children a voice on their experiences of healthcare : A cross‐sectional study
- 2022
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Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 25:1, s. 384-393
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundIn 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.ObjectiveThis 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.MethodsThis 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).ResultsThe 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.ConclusionFurther 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.
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| 3. |
- Andersen, Randi Dovland, et al.
(författare)
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Pain burden in children with cerebral palsy (CPPain) survey : Study protocol
- 2022
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Ingår i: Paediatric and Neonatal Pain. - : John Wiley & Sons. - 2379-5824 .- 2637-3807. ; 4:1, s. 11-21
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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CHILDREN'S NARRATIVES OF SUPPORT FROM PARENTS WHEN EXPERIENCING FEAR RELATED TO ACUTE LYMPHOBLASTIC LEUKEMIA
- 2022
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 69:Suppl. 5, s. S528-S528
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background and Aims: Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically undergo intense treatment with frequent hospitalizations. Medical, as well as existential fears have been identified. It has also been found that children's coping strategies develop during their illness trajectory. The literature on what children with ALL find to be valuable support from parents when experiencing fear is sparse. Thus, the aim of this presentation is to describe what young children find to be important support from their parents when experiencing fear related to ALL.Methods: The study had a longitudinal descriptive qualitative design. Thirteen children (3 girls and 10 boys), initially 5-9 years old were interviewed once to three times during their treatment period (approximately 2 months after the diagnosis, after 1 year, and at end of treatment). Data were analyzed using a matrix-based qualitative analysis method.Results: The parents’ physical and emotional closeness was the most frequently reported support. It eased the children's medical and existential fears. The children also found it supportive when the parents facilitated for them to participate in their care and when the parents acted as their advocate. Other supportive measures were offering distraction, talking to the child about their fears, assisting the professionals in alleviating pain and fear, being playful and encouraging. Five children also appreciated when their parents restricted them, during medical procedures. The experiences of support varied between children and between different time points during treatment.Conclusions: Although being quite young, the children were able to describe what they found to be supportive when experiencing fear, or for preventing fear. The parental support had an impact on the child's emotional, social and physical wellbeing. Professionals should encourage parents to stay with their child, and offer support to the parents, so that they in turn can support their child.
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| 5. |
- Anderzén Carlsson, Agneta, 1966-, et al.
(författare)
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Children’s Narratives of Support From Professionals when Experiencing Fear Related to Acute Lymphoblastic Leukemia
- 2020
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Ingår i: Pediatric Blood & Cancer. - : John Wiley & Sons. - 1545-5009 .- 1545-5017. ; 67:S4, s. 120-120
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Tidskriftsartikel (refereegranskat)abstract
- Children diagnosed with Acute Lymphoblastic Leukemia (ALL) typically face 2.5 years treatment, which initially is intense and includes frequent hospitalizations. Previous research has identified various fears during treatment: fear of getting needles, removal of adhesive tapes, having a feeding tube, taking tablets and the physical changes related to ALL itself, as well as to treatments. The children’s coping strategies develop during the course of illness. The literature on what children with ALL find to be supportive when experiencing fear is sparse. The aim of this presentation is thus to describe what children 5-9 years old find to be important support from professionals when experiencing fear related to ALL.
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| 6. |
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| 7. |
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| 8. |
- Anderzen-Carlsson, Agneta, 1966-, et al.
(författare)
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Qualitative matrix based analysis : a useful alternative for analyzing longitudinal data of children’s experiences
- 2020
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Konferensbidrag (refereegranskat)abstract
- Background: Previously, researchers have pointed out the importance of giving voice to children’s experiences of health care, as well to follow these experiences over time.Objective: To describe experiences of fear in 5-9 year-old children, related to having Acute Lymphoblastic Leukemia (ALL).Method: 3 girls and 10 boys participated in one to three interviews during their treatment period. The interviews were performed approximately two months after diagnosis, after one year and at the end of treatment (after 2.5 years). The data comprised 35 interviews in total, with an average length of 35 minutes. To capture the longitudinal perspective, a qualitative matrix methodology was adopted. First, individual matrices for each child was developed, where all narratives about their fears during the entire treatment period were inserted. Next, a cross-case matrix was developed, where all text from all the individual case-matrices were compiled for each time point. The general idea of the matrices was to visualize data, thus enabling the researchers to easier identify common patterns, between cases and over time. In this step, common fears experienced by the children were identified, and finally, summary cross-case matrices were created. These were used to summarize how many children who had experienced various fears at the three time points, during treatment.Results: Fear of needles was the most commonly reported fear. This fear was most prominent and most often reported at the start of treatment. For >50% of the children this fear remained at the end of treatment. Fear related to the physical changes caused by the ALL or treatment, on the other hand increased during the treatment period.Conclusion: The qualitative matrix based methodology was found to be useful when analyzing qualitative longitudinal interview-data from children with ALL. The analysis was quite manifest, which suited the data derived from young children.
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| 9. |
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| 10. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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Experiences of living with balance limitations after first-ever stroke
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: Stroke is the leading cause of serious, long-term disability among adults. Balance control after stroke may be affected due to motor impairment such as muscle weakness, spasticity and impaired sensory function and also cognitive deficits may affect balance control. The balance limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.Purpose: The aim of the present presentation is to describe experiences of living with balance limitations in everyday life after first-ever stroke.Methods: Twenty persons initially agreed to participate; however, one person later declined further participation, thus giving a sample size of 19 participants (10 females and 9 men), aged between 42-92 years. The inclusion criteria were: having had a first-ever stroke and having self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. A qualitative data collection through individual interviews was conducted. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.Results: The participants' experiences of balance and its influence in everyday life, are presented in two themes. The first theme “Feeling dizzy and unstable is a continuous challenge”, revolves around participants' descriptions of balance as a constant feeling of dizziness and unsteadiness. The second theme “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.Conclusion(s): All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life. In future research it would be of interest to establish which strategies can make persons with stroke feel in balance in relation to fear of falling.Implications:In physical therapy practice, the experiences of balance limitations after stroke from the person with stroke add valuable information to various assessments. By asking the person about their abilities and challenges in daily living, rehabilitation interventions can be more individualized and based on the person's actual condition and their wishes and needs.
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| 11. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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"I can manage the challenge" : a qualitative study describing experiences of living with balance limitations after first-ever stroke
- 2021
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 16:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 12. |
- Arvidsson Lindvall, Mialinn, 1977-, et al.
(författare)
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LIVING WITH BALANCE LIMITATIONS AFTER FIRST-EVER STROKE
- 2020
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Ingår i: International Journal of Stroke. - : Wiley-Blackwell Publishing Asia. - 1747-4930 .- 1747-4949. ; 15:Suppl. 1, s. 257-257
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Background: Stroke is the leading cause of serious, long-term disability among adults. Balance can be limited after stroke and the limitations affect walking and independence in activities of daily living. Having good balance has been described as an important factor in outdoor walking and for participation in exercises. Studies in which persons with stroke describe their experience of balance in everyday life are scarce.Aim: To describe experiences of living with balance limitations after first-ever stroke.Methods: A qualitative design, comprising interviews with 19 persons with first-ever stroke, ten women and nine men, aged between 42–92 years. Inclusion criteria were: having had a first-ever stroke and self-reported impaired balance, unaffected speech, independence in toileting and dressing, and walking ability indoors and outdoors with or without a walking aid. Data was analysed by means of an inductive content analysis covering both the manifest and the latent content of the transcribed interviews.Results: The results are presented in two themes illustrating the latent content of the data. “Feeling dizzy and unstable is a continuous challenge” revolves around participants’ descriptions of balance as a constant feeling of dizziness and unsteadiness. “Feeling trust and confidence despite dizziness and unsteadiness” is about perceived abilities and feelings of confidence about still being able to do things oneself, despite the dizziness and unsteadiness.Conclusion: All participants experienced the balance limitations as a continuous challenge in everyday life, yet they also felt trust and confidence and experienced that they still managed their everyday life.
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| 13. |
- Björk, Maria, et al.
(författare)
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The consequences of deafblindness rules the family : Parents' lived experiences of family life when the other parent has deafblindness
- 2022
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Ingår i: The British Journal of Visual Impairment. - : Sage Publications. - 0264-6196 .- 1744-5809. ; 40:1, s. 18-28
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Tidskriftsartikel (refereegranskat)abstract
- Deafblindness is a combined vision and hearing disability that restricts communication, access to information, and mobility, thus limiting a person's activities and full participation in society. Literature on how this might affect the lives of family members is sparse. The aim of this study is to describe the lived experience of family life from the perspective of one parent when the other has deafblindness. Six partners of deafblind parents, four men and two women, agreed to participate. Three were deaf and communicated in Swedish sign language. Qualitative interviews were conducted and analysed using interpretative phenomenological analysis. Seven themes were identified during the analysis. When one parent has deafblindness, communication within the family and with people outside the family is affected. The non-deafblind partners tried to integrate deafblindness into everyday family life and constantly strove to compensate for the losses caused by deafblindness. They tried to enhance participation and engagement in everyday family life for the parent with deafblindness by facilitating communication and taking a greater part in some areas of their shared responsibilities at home. The results reveal that these partners often put themselves in second place. They and their families needed support to manage family life. Deafblindness affects the life of the entire family, and the non-deafblind partner has to take considerable responsibility for everyday life. Everyday life can be facilitated by an adapted environment and appropriate support, which should be offered to the entire family.
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| 14. |
- Bäck, Anna-Karin, 1971-, et al.
(författare)
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Troubled but in good hands : A qualitative study on patient experiences in diuresis renography examinations
- 2024
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Ingår i: Radiography. - : Elsevier. - 1078-8174 .- 1532-2831.
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Diuresis renography is a nuclear medicine examination that can distinguish between obstructive and non-obstructive uropathy. Renography has been investigated before, but not from a patient perspective. The aim of this study was to gain knowledge and understanding of patient experiences with the diuresis renography process.METHODS: The study had a qualitative descriptive design; data was collected through semi-structured interviews with 17 adult patients that had recently undergone diuresis renography. The transcripts were analysed using inductive qualitative content analysis to identify their manifest and latent content.RESULTS: One main theme was identified: 'Not smooth all the way through, but still in good hands'. The participants understood the necessity of the performed renography and endured the examination despite its worrying elements. They were bothered by diuretic effects, worried about radioactivity and felt isolated during the imaging. The technologists' caring and informative approach eased their experience. The main theme was identified from three subthemes: 'I experienced inconvenience', 'I was worried' and 'I felt safe'.CONCLUSION: The participants experienced worry throughout the renography process but were still satisfied with the examination, mostly because of the technologists being involved. Communication and interaction between patient and technologist are important for creating a good experience. Improved knowledge of patient experiences during renographies could be used to develop patient information and increase technologists' awareness of factors patients may experience as troubling.IMPLICATIONS FOR PRACTICE: This study describes issues that contribute to both negative and positive experiences. Improved professional awareness and knowledge about these issues can contribute to the development of patient information and professional encounters, and may improve patients' compliance and overall experience.
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| 15. |
- Ehn, Mattias, 1972-
(författare)
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Life Strategies, Work and Health in People with Usher Syndrome
- 2020
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: People with Usher syndrome (USH) have an inherited disorder causing congenital deafness or hearing loss combined with progressive vision loss and, in some cases, balance problems. Previous research has shown that people with USH have poor physical and psychological health. Research has, however, demonstrated that there are in-group health differences that have not yet been explored and that there is a lack of studies on life strategies as well as health in relation to working life.Aim: The aim was to explore the relationship between work and health in people with USH1 and 2 and to explore the experiences of life strategies in people with USH 2.Methods: A quantitative and a qualitative explorative design was employed comprising two cross-sectional studies of the relationship between work and health in people with USH2 (n=67) and USH1 (n=47). The third study, of life strategies, comprised focus group interviews with people with USH2a (n=14) analyzed by content analysis. The fourth study explored the lived experiences of working life by interviewing people with USH2 (n=7) using an interpretative phenomenological approach.Results: Study 1 and 2 demonstrated significant differences in health between working and nonworking people. Nonworking people showed significantly poorer health. In study 3, a variety of strategies to prevent and resolve challenges in life, as well as to comfort oneself was identified. The lived experiences of working life in people with USH2 (study 4) disclosed feelings of satisfaction, striving towards a work life balance. Work also disclosed feelings of limitations and uncertainty about the future.Conclusion: The results, which are discussed in relation to the Meikirsh model of health, demonstrated a complexity. Individual life strategies, psychological flexibility and environmental aspects, such as social determinants have to be considered to receive a comprehensive picture of the relationship between work and health in people with USH. This thesis provides new insights into the health of people with USH.
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| 16. |
- Ehn, Mattias, 1972-, et al.
(författare)
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The lived experiences of work and health of people living with deaf-blindness due to Usher syndrome type 2
- 2020
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Co-Action Publishing. - 1748-2623 .- 1748-2631. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 17. |
- Granrud, Marie Dahlen, et al.
(författare)
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Public health nurses' experiences working with children who are next of kin : a qualitative study
- 2022
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Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 18. |
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| 19. |
- Huus, Karina, 1968-, et al.
(författare)
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Living an ordinary life - yet not : the everyday life of children and adolescents living with a parent with deafblindness
- 2022
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 20. |
- Imhagen, Annika, 1972-, et al.
(författare)
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A lifelong struggle for a lighter tomorrow : A qualitative study on experiences of obesity in primary healthcare patients
- 2023
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Ingår i: Journal of Clinical Nursing. - : John Wiley & Sons. - 0962-1067 .- 1365-2702. ; 32:5-6, s. 834-846
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 21. |
- Leibring, Ingela, et al.
(författare)
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Fear, coping and support- from the perspective of children aged 10-17-year old having acute lymphoblastic leukemia
- 2024
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Ingår i: International Journal of Qualitative Studies on Health and Well-being. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 19:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 22. |
- Lindberg, Eva, et al.
(författare)
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Congenital chloride diarrhea and Pendred syndrome : case report of siblings with two rare recessive disorders of SLC26 family genes
- 2020
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Ingår i: BMC Medical Genetics. - : BioMed Central. - 1471-2350. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Congenital chloride diarrhea (CLD; OMIM 214700) is a rare autosomal recessive disorder caused by pathogenic variations in the solute carrier family 26 member A3 (SLC26A3) gene. Without salt substitution, this chronic diarrheal disorder causes severe dehydration and electrolyte disturbances. Homozygous variants in the nearby gene SLC26A4 disrupt anion exchange in the inner ear and the thyroid, causing Pendred syndrome (PDS; OMIM 274600), which is the most frequent form of syndromic deafness.CASE PRESENTATION: We report an unusual co-occurrence of two rare homozygous mutations in both the SLC26A3 and SLC26A4 genes, causing a rare combination of both CLD and PDS in two siblings. Although the clinical pictures were typical, the combined loss of these anion transporters might modulate the risk of renal injury associated with CLD.CONCLUSIONS: Familial presentation of two rare autosomal recessive disorders with loss of function of different SLC26 anion transporters is described. Independent homozygous variants in the SLC26A3 and SLC26A4 genes cause CLD and PDS in siblings, shedding light on co-occurrence of rare recessive traits in the progeny of consanguineous couples.
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| 23. |
- Lundin, Elin, 1976-, et al.
(författare)
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Experiences of rehabilitation services from the perspective of older adults with dual sensory loss : a qualitative study
- 2022
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Ingår i: International Journal of Qualitative Research on Health and Well-being.. - : Taylor & Francis. - 1748-2623 .- 1748-2631. ; 17:1
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To describe the rehabilitation service experiences of older adults with dual sensoryloss (DSL).Methods: Twenty older adults aged ≥65 years with DSL participated in semistructuredinterviews. 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 compensat-ing for loss of function and medical corrections; 2. Mastering the situation described theindividuals’ competence of DSL, skills acquisition and taking control; and 3. Delivery ofrehabilitation services included experiences of encounters with professionals, their attitudesand the organizational impact on accessibility and collaboration.Conclusions: It was important for participants to regain function and compensate for loss infunction and to meet others in group rehabilitation. The professionals’ attitudes were animportant 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 ofhealthy ageing. The findings can contribute to the development of rehabilitation services forolder adults with DSL to meet the diversity of these individuals’ needs.
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| 24. |
- Lundin, Elin, 1976-
(författare)
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Older Adults with Dual Sensory Loss : Prevalence, Diagnoses & Rehabilitation Services
- 2022
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction: Globally, the population aged 65 years and older are predicted to double within 30 years. The risk of developing vision loss in combination with hearing loss – dual sensory loss (DSL) increases with age. DSL affects older adults within several aspects, and the main areas are communication, information, participation and orientation and mobility. Aim: The overall aim was to describe older adults with DSL regardingprevalence, diagnoses, rehabilitation and experiences with rehabilitation services in the Swedish context.Methods: Quantitative and qualitative methods were used. Data were collected by using register data, mainly medical records (Study I), and by individual interviews with older adults with DSL (Study II). In the first study, data were analysed using descriptive statistics and chi square tests, and in the second study inductive qualitative content analysis was used. Results: Study I showed that the national prevalence of severe DSL was estimated to approximately 0.08%. The result also showed statisticallysignificant differences in prevalence of severe DSL between age groups and the prevalence of severe DSL increased with age. No statistically significant difference were found between women and men regarding prevalence. Older adults with DSL had been provided with several rehabilitation services and the focus of the services were mainly on one of the senses, not on the combination of sensory losses. Sensorineural hearing loss in combination with cataracts and age-related macular degeneration were the most common diagnoses. Study II presented older adults experiences of rehabilitation services and they described that several of the rehabilitation services were significant for them to be able to communicate, participate in social events and independently perform day-to-day activities.Conclusion: It is important that rehabilitation services provided to older adults with DSL are person-centred to promote healthy aging.
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| 25. |
- Lundin, Elin, 1976-, et al.
(författare)
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Prevalence, diagnoses and rehabilitation services related to severe dual sensory loss (DSL) in older persons : a cross-sectional study based on medical records
- 2020
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Ingår i: International Journal of Audiology. - : Taylor & Francis. - 1499-2027 .- 1708-8186. ; 59:12, s. 921-929
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To estimate the prevalence of severe dual sensory loss (DSL) among older persons (aged >= 65 years) in the Swedish population, to identify the diagnoses that cause severe DSL, and to identify rehabilitation services in which the participants have been involved.Design: A cross-sectional design was applied. Medical records from Audiological, Low Vision, and Vision clinics from two Swedish counties were used.Study sample: 1257 adults, aged >= 65 years with severe hearing loss (HL) (>= 70 dB HL) were included, whereof 101 had decimal visual acuity <= 0.3.Results: Based on the population size in the two counties (>= 65 years, n = 127,638), the prevalence of severe DSL was approximately 0.08% in the population. Within the group having DSL (n = 101), 61% were women and 71% were aged >= 85 years. Common diagnoses were cataract and/or age-related macular degeneration (AMD) in combination with HL. The rehabilitation services offered were mainly hearing aids and various magnifiers.Conclusions: The study confirmed previous results, indicating that the prevalence of severe DSL increases with age and that sensorineural HL and cataract, AMD or glaucoma coexist. The identified rehabilitation services mainly focussed on either vision loss or HL but not on severe DSL as a complex health condition.
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| 26. |
- Nafees, Zanib, et al.
(författare)
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Adaptation, Translation, and Validation of a Patient-Reported Experience Measure for Children and Young People for the Canadian Context
- 2024
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Ingår i: Journal of Pediatric Surgery. - : Elsevier. - 0022-3468 .- 1531-5037. ; 59:5, s. 810-817
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 27. |
- Nordlind, Anna, 1972-, et al.
(författare)
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Translation, cultural adaptation and validation of a patient-reported experience measure for children
- 2024
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Ingår i: Health Expectations. - : John Wiley & Sons. - 1369-6513 .- 1369-7625. ; 27:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 28. |
- Norlander, Louise, 1990-, et al.
(författare)
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Health-related quality of life after Nuss procedure for pectus excavatum : a cross-sectional study
- 2022
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Ingår i: Interactive Cardiovascular and Thoracic Surgery. - : Oxford University Press. - 1569-9293 .- 1569-9285. ; 35:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 29. |
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| 30. |
- Norlander, Louise, 1990-, et al.
(författare)
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Translation and psychometric evaluation of the Swedish versions of the Nuss Questionnaire modified for Adults and the Single Step Questionnaire
- 2021
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Ingår i: Journal of Patient-Reported Outcomes. - : Springer Nature. - 2509-8020. ; 5:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 31. |
- Piippo-Huotari, Oili, 1959-, et al.
(författare)
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Patients' and radiographers' experiences of dose reducing abdominal compression in radiographic examinations : A qualitative study
- 2020
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Ingår i: Nursing Open. - : John Wiley & Sons. - 2054-1058. ; 7:3, s. 680-689
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Tidskriftsartikel (refereegranskat)abstract
- Aim: To describe patients' and radiographers' experiences of abdominal compression using conventional and patient-controlled compression methods.Design: Qualitative descriptive design.Methods: Forty-five patients who had used both a conventional and a patient-controlled compression device answered questionnaires. Five radiographers were interviewed. The data-collection took place between September 2015 and February 2017. Data were analysed by qualitative content analysis.Results: Patient-controlled compression was preferred by slightly more patients because of fear of pain due to excessively hard pressure, maintaining control over the pressure and shorter duration. It was more comfortable, and patients felt they could participate in the examinations. Conventional compression was preferred by some because of more stable pressure and uncertainty of own capacity to provide the optimal compression. Discomfort was more often mentioned concerning the conventional compression method. The radiographers experienced the patient-controlled method as less time-consuming and more comfortable, but uncertainty about correct compression technique and its effect on radiation dose and image quality was reported.
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| 32. |
- Rinde, Elisabeth Rønning, et al.
(författare)
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"I have to obey my pain" : children's experiences of pain burden in cerebral palsy
- 2024
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165. ; 46:6, s. 1112-1120
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 33. |
- Rinde, Elisabeth Rønning, et al.
(författare)
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"Pain is one piece of a complex jigsaw puzzle" : experiences of raising a child with cerebral palsy who has pain
- 2023
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Ingår i: Disability and Rehabilitation. - : Taylor & Francis. - 0963-8288 .- 1464-5165.
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Tidskriftsartikel (refereegranskat)abstract
- 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 REHABILITATION: Parents 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.
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| 34. |
- Steffenak, Anne Kjersti Myhrene, et al.
(författare)
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Community-based support for children who are next-of-kin for a parent experiencing illness or disability : a scoping review
- 2021
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Ingår i: BMC Health Services Research. - : BioMed Central. - 1472-6963. ; 21:1
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Forskningsöversikt (refereegranskat)abstract
- 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.
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| 35. |
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| 36. |
- Sundqvist, Ann-Sofie, 1971-, et al.
(författare)
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Interventions for children with deafblindness : An integrative review
- 2023
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Ingår i: Child Care Health and Development. - : John Wiley & Sons. - 0305-1862 .- 1365-2214. ; 49:3, s. 407-430
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Forskningsöversikt (refereegranskat)abstract
- BACKGROUND: Deafblindness is a rare condition, and its prevalence has been reported to be approximately one 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. Since 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 0-18 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 6,268 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 is 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.
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| 37. |
- Wahlqvist, Moa, 1979-, et al.
(författare)
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Health-Related Quality of Life, Family Climate and Sense of Coherence of Families in Which a Parent Has Deafblindness
- 2020
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Ingår i: Frontiers in Education. - : Frontiers. - 2504-284X. ; 5
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: The consequences of living with deafblindness can be vast and have been described as concerning difficulties with communication, restrictions in the activities of daily living and a lack of independence. Deafblindness has also been associated with poor health-related quality of life. Little is known about parenting when having deafblindness or how the health and family climate of families in which a parent has deafblindness are affected. Aim: The aim of the study was to describe the health-related quality of life, sense of coherence and family climate in families where a parent has a deafblindness.Methods: A total of 38 individuals, of which 14 were parents with deafblindness and 6 were partners to the parent with deafblindness, and 18 children, were included. The participants answered questionnaires about their health-related quality of life, family climate and sense of coherence (comprehensibility, manageability, and meaningfulness). The Swedish age-relevant versions of the questionnaires were used. Due to the small number of participants, descriptive statistics were used to explore the results from the questionnaires.Results: The results revealed a pattern indicating that the health-related quality of life was affected, parents with deafblindness reported the poorest health-related quality of life. Sense of coherence was reported by all the family members as either moderate or low. The Family climate questionnaire revealed the positive aspect of closeness across family members, however negative aspects of chaos and expressiveness in the families were reported, mainly by, but not restricted to, the parents with deafblindness.Discussion: This study includes a small sample, too small to draw far-reaching conclusions. However, some interesting results need to be highlighted and discussed. When considering the family as a system, it is reasonable to assume that the family members contribute in different ways to how health and wellbeing is experienced in the family. Deafblindness is a unique disability that affects not only the individual but also the whole family. This fact needs to be considered when support is offered to individuals with deafblindness. All members of families where a parent has deafblindness have to be asked about their needs and about how they experience the situation.
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| 38. |
- Warnicke, Camilla, 1971-, et al.
(författare)
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Interventions for adults with deafblindness : an integrative review
- 2022
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Ingår i: BMC Health Services Research. - : BioMed Central (BMC). - 1472-6963. ; 22:1
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Forskningsöversikt (refereegranskat)abstract
- 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.
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