| 1. |
|
|
| 2. |
|
|
| 3. |
|
|
| 4. |
|
|
| 5. |
- Arvidsson, Patrik, et al.
(författare)
-
Content validity and usefulness of Picture My Participation for measuring participation in children with and without intellectual disability in South Africa and Sweden
- 2020
-
Ingår i: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 27:5, s. 336-348
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Participation comprises attendance and involvement in everyday situations. Picture My Participation (PmP) is an instrument intended to measure participation in children with disabilities, particularly in low and middle income countries. Aim: To investigate content validity and usefulness of PmP for measuring participation in children with intellectual disability (ID) in South Africa and Sweden. Methods: A picture supported interview with 149 children, 6-18 years, with and without ID. Twenty everyday activities were provided. The three most important activities were selected by the child. Attendance was rated on all activities. Involvement was rated on the most important. Results: All activities were selected as important by at least one child with ID in both countries. There were similarities in perceived importance between the children with and without ID from South Africa. The children from South Africa with ID were the only subgroup that used all scale points for rating attendance and involvement. Conclusion: The 20 selected activities of PmP were especially relevant for children with ID in South Africa. The usefulness of the scales was higher for the children with ID in both countries. PmP is promising for assessing participation across different settings but psychometrical properties and clinical utility need further exploration.
|
|
| 6. |
- Arvidsson, Patrik, et al.
(författare)
-
Structural validity and internal consistency of Picture My Participation : A measure for children with disability
- 2021
-
Ingår i: African Journal of Disability. - : OASIS. - 2226-7220 .- 2223-9170. ; 10
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Picture My Participation (PMP) intended to measure participation, defined as attendance and involvement in everyday situations, of children with disabilities, particularly in low- and middle-income settings.Objectives: To explore structural validity of PMP by identifying possible subcomponents in the attendance scale and examining internal consistency of the total score and each subcomponent.Method: A picture-supported interview was conducted with 182 children, 7–18 years, with and without intellectual disability (ID). Frequency of attendance in 20 activities was rated on a four-point Likert scale (never, seldom, sometimes and always).Results: An exploratory principal component analysis extracted four subcomponents: (1) organised activities, (2) social activities and taking care of others, (3) family life activities and 4) personal care and development activities. Internal consistency for the total scale (alpha = 0.85) and the first two subcomponents (alpha = 0.72 and 0.75) was acceptable. The two last subcomponents alpha values were 0.57 and 0.49.Conclusion: The four possible subcomponents of PMP can be used to provide information about possible domains in which participation and participation restrictions exist. This study provided further psychometric evidence about PMP as a measure of participation. The stability and the utility of these subcomponents needed further exploration.
|
|
| 7. |
- Balton, Sadna, et al.
(författare)
-
Test-retest reliability of Picture My Participation in children with intellectual disability in South Africa
- 2022
-
Ingår i: Scandinavian Journal of Occupational Therapy. - : Informa UK Limited. - 1103-8128 .- 1651-2014. ; 29:4, s. 315-324
-
Tidskriftsartikel (refereegranskat)abstract
- Background Picture My Participation (PmP) is a promising instrument for measuring the participation in everyday situations of children with intellectual disability (ID), particularly in low- and middle-income countries. Aim To explore test-retest reliability of PmP by comparing two repeated measurements of children with ID in an urban context in South Africa. Methods A picture-supported interview with 31 children with ID, aged 7-17 years, was conducted twice, two weeks apart. The children rated their participation, operationalised as attendance and involvement, in 20 everyday activities. Analyses were completed for total scores, for the four subcomponents and at item level. Results Test-retest agreement at an item level for both attendance and involvement showed slight/fair agreement for most activities (Kappa = 0.01-0.40), and moderate agreement for some activities (Kappa = 0.41-0.60). Moderate agreement was shown for the total scale and at component level (ICC = 0.5-0.75), except for (firstly) attendance of and involvement in 'Family Activities' (ICC = 0.26 for attendance, 0.33 for involvement), and (secondly) involvement in 'Personal Activities' (ICC = 0.33). Conclusion The result indicates that PmP can reliably be used at component level and as a screening tool for intervention planning to identify participation and participation restrictions in children with ID.
|
|
| 8. |
- Björk, Maria, et al.
(författare)
-
The consequences of deafblindness rules the family : Parents' lived experiences of family life when the other parent has deafblindness
- 2022
-
Ingår i: The British Journal of Visual Impairment. - : Sage Publications. - 0264-6196 .- 1744-5809. ; 40:1, s. 18-28
-
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.
|
|
| 9. |
- Björkman, Berit, et al.
(författare)
-
Are radiographers prepared to meet children with special needs, when seen for an examination?
- 2017
-
Ingår i: Acta Radiologica. - : Sage Publications. - 0284-1851 .- 1600-0455. ; 58:1 Suppl., s. 16-16
-
Tidskriftsartikel (refereegranskat)abstract
- Introduction: Anxiety is often experienced by children undergoing health care procedures, and children with autism spectrum disorders (ADS) experience more anxiety than typically developed children. A prerequisite for obtaining an optimum procedure is firstly based on the health care provider’s knowledge about children with ASD, but may also depend on the use of guidelines. Two previous national surveys showed, that none radiology or paediatric departments and a minority of anaesthesiology departments throughout Sweden use specific guidelines when seeing children with ASD. Following, the purpose was to develop guidelines to use when caring for and preparing children with ASD in those settings.Methods: A modified Delphi method was used, including19 experts identified from the two afore mentioned surveys. The questions considered in the process, proceeded from previous research and the results from the surveys. The experts’ responses regarding the importance of each item, were analysed and scrutinized between each round.Results: The Delphi process resulted in guidelines consisting of 15 items and a checklist with 16 aspects. The items cover the areas: planning and involving parents, features in the environment, use of time, communication, thehealth care professionals. The checklist covers the child’spattern of communication, anxiety, sensory stimuli, special interests and likes/dislikes.Conclusions: To obtain an optimum caring encounter when a child with ASD is seen in the preoperative and radiology setting, a meticulous planning is important and the environment should be adjusted for the needs of the child. To accomplish this, guidelines need to be in place and be followed.
|
|
| 10. |
- Björkman, Berit, et al.
(författare)
-
Peri-radiographic guidelines for children with autism spectrum disorder : a nationwide survey in Sweden
- 2017
-
Ingår i: Child Care Health and Development. - : Wiley-Blackwell. - 0305-1862 .- 1365-2214. ; 43:1, s. 31-36
-
Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVE: This study aimed to investigate the prevalence of guidelines and routines used nationwide when children with autism spectrum disorder (ASD) are taken care of and examined in a radiology department during a peri-radiographic process.METHOD: A nationwide survey was compiled and distributed to 94 radiology departments throughout Sweden, i.e. those performing more than 100 000 radiographic examinations annually. The survey was designed as a web questionnaire with seven questions on possible guidelines and/or routines for the departments when preparing and taking care of children with ASD in conjunction with a radiographic procedure. The data were scrutinized, using descriptive statistics.RESULTS: In total, 86 radiology departments responded to the survey (response rate 92%). Of those departments, 40 did not examine children with ASD. None of the departments included in the study had existing guidelines underpinning the routines when preparing and performing radiographic examinations for children diagnosed with ASD. A few departments (n = 8) would set aside more time for the procedure if it were known in advance that the child to be examined had been diagnosed with ASD. Also, some departments (n = 7) had radiographers who were more experienced in the care of children who would be appointed to perform examinations for children with ASD.CONCLUSION: It is suggested that guidelines should be developed in order to increase interaction in a supportive way and decrease anxiety during the peri-radiographic process with children with ASD.
|
|
| 11. |
- Carlsson, Emma, et al.
(författare)
-
High physical activity in young children suggests positive effects by altering autoantigen-induced immune activity
- 2016
-
Ingår i: Scandinavian Journal of Medicine and Science in Sports. - : Wiley-Blackwell. - 0905-7188 .- 1600-0838. ; 26:4, s. 441-450
-
Tidskriftsartikel (refereegranskat)abstract
- Physical activity in children is associated with several positive health outcomes such as decreased cardiovascular risk factors, improved lung function, enhanced motor skill development, healthier body composition, and also improved defense against inflammatory diseases. We examined how high physical activity vs a sedentary lifestyle in young children influences the immune response with focus on autoimmunity. Peripheral blood mononuclear cells, collected from 55 5-year-old children with either high physical activity (n = 14), average physical activity (n = 27), or low physical activity (n = 14), from the All Babies In Southeast Sweden (ABIS) cohort, were stimulated with antigens (tetanus toxoid and beta-lactoglobulin) and autoantigens (GAD65 , insulin, HSP60, and IA-2). Immune markers (cytokines and chemokines), C-peptide and proinsulin were analyzed. Children with high physical activity showed decreased immune activity toward the autoantigens GAD65 (IL-5, P < 0.05), HSP60 and IA-2 (IL-10, P < 0.05) and also low spontaneous pro-inflammatory immune activity (IL-6, IL-13, IFN-γ, TNF-α, and CCL2 (P < 0.05)) compared with children with an average or low physical activity. High physical activity in young children seems to have positive effects on the immune system by altering autoantigen-induced immune activity.
|
|
| 12. |
- Dada, Shakila, et al.
(författare)
-
Agreement between participation ratings of children with intellectual disabilities and their primary caregivers
- 2020
-
Ingår i: Research in Developmental Disabilities. - : Elsevier. - 0891-4222 .- 1873-3379. ; 104
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Participation of children with ID it is argued must be understood in relation to the fit with the environment. Since caregivers are a vital factor within the close environment of a child with intellectual disability, their perceptions are unequivocally important.Aims: The main aim of this study is to describe the self-reported participation of children with ID and the perceptions of their primary caregivers. Both frequency of attendance and perceived importance of activity was measured with self-reported and proxy-reports.Methods & Procedures: A custom developed Picture my Participation (PmP) survey was utilised in an interview format with children with intellectual disability whilst their primary caregivers completed the survey independently.Results: Overall, the perceptions of children with intellectual disabilities and of primary caregivers showed similarities regarding attendance and activities considered important. On group level, both children and primary caregivers perceived the child to have a high level of attendance ofFormal learning in school, Family mealtime, Interacting with family and Celebrations. An overall poor agreement in perceived frequency of attendance was found. However, in child-primary cargiver-dyads poor agreement in perceived frequency of attendance was found.Conclusions: While primary caregivers and children's ratings of attendance and selection of the most important activities appeared somewhat similar, there was a noted difference, in that primary caregivers’ were uniform in their selection, whilst there was a diversity in the selection of activities amongst children.
|
|
| 13. |
- Dada, S., et al.
(författare)
-
PARTICIPATION OF CHILDREN WITH DISABILITIES AND THEIR PEERS IN LOW- AND MIDDLE-INCOME COUNTRIES : Comparison of Children with and without Disabilities
- 2023
-
Ingår i: The Routledge Handbook of Inclusive Education for Teacher Educators. - London : Taylor & Francis. - 9781000843415 - 9781032129877 ; , s. 157-190
-
Bokkapitel (övrigt vetenskapligt/konstnärligt)abstract
- Participation in all aspects of life is a right of children. However, in high-income countries, children with developmental disabilities (DD) are not afforded the same participation as their peers with typical development (TD). This can affect their life experiences and academic success. For children with DD, most of whom live in low- and middle–income countries (LMIC), understanding of how patterns of participation differ from their peers with TD is limited, which impacts how they are included in the classroom. This study described research on the participation of children with DD and their peers with TD in LMIC. A scoping review was conducted for studies on the participation of children with DD and their peers with TD from LMIC, using established assessments. Sixteen studies from eight middle-income countries were identified. These studies suggested that decreased participation for children with DD in comparison to their peers with TD was prevalent. Overall, the participation of children with DD and their peers with TD followed a similar pattern in the LMIC countries to that in high-income countries, with children with DD having lower participation in physical, social and skill-based activities, suggesting that the participation of children may follow universal patterns.
|
|
| 14. |
- Danielsson, Henrik, et al.
(författare)
-
A Systematic Review of Longitudinal Trajectories of Mental Health Problems in Children with Neurodevelopmental Disabilities
- 2024
-
Ingår i: Journal of Developmental and Physical Disabilities. - : Springer. - 1056-263X .- 1573-3580. ; 36, s. 203-242
-
Forskningsöversikt (refereegranskat)abstract
- To review the longitudinal trajectories - and the factors influencing their development - of mental health problems in children with neurodevelopmental disabilities. Systematic review methods were employed. Searches of six databases used keywords and MeSH terms related to children with neurodevelopmental disabilities, mental health problems, and longitudinal research. After the removal of duplicates, reviewers independently screened records for inclusion, extracted data (outcomes and influencing factors), and evaluated the risk of bias. Findings were tabulated and synthesized using graphs and a narrative. Searches identified 94,662 unique records, from which 49 publications were included. The median publication year was 2015. Children with attention deficit hyperactivity disorder were the most commonly included population in retrieved studies. In almost 50% of studies, trajectories of mental health problems changed by < 10% between the first and last time point. Despite multiple studies reporting longitudinal trajectories of mental health problems, greater conceptual clarity and consideration of the measures included in research is needed, along with the inclusion of a more diverse range of populations of children with neurodevelopmental disabilities.
|
|
| 15. |
- Darcy, Laura, et al.
(författare)
-
The everyday life of the young child shortly after receiving a cancer diagnosis, from both children's and parent's perspectives
- 2014
-
Ingår i: Cancer Nursing. - Alphen aan den Rijn : Wolters Kluwer. - 0162-220X .- 1538-9804. ; 37:6, s. 445-456
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Providing qualified, evidence-based healthcare to children requires increased knowledge of how cancer affects the young child's life. There is a dearth of research focusing on the young child's experience of everyday life.Objective: The purpose of this study was to explore young children's and their parents' perceptions of how cancer affects the child's health and everyday life shortly after diagnosis.Methods: Thirteen children with newly diagnosed cancer aged 1 to 6 years and their parents, connected to a pediatric oncology unit in Southern Sweden, participated in this study through semistructured interviews. Child and parent data were analyzed as a family unit, using qualitative content analysis.Results: Everyday life was spent at hospital or at home waiting to go back to hospital. Analysis led to the following categories: feeling like a stranger, feeling powerless, and feeling isolated.Conclusions: The child wants to be seen as a competent individual requiring information and participation in care. Parents need to be a safe haven for their child and not feel forced to legitimize painful and traumatic procedures by assisting with them. Nurses play a major role in the lives of children. Research with and on the young child is necessary and a way of making them visible and promoting their health and well-being.Implications for practice: Nurses need to reevaluate the newly diagnosed child's care routines so as to shift focus from the illness to the child. This requires competent nurses, secure in their caring role.
|
|
| 16. |
|
|
| 17. |
- Enskär, Karin, et al.
(författare)
-
A literature review of the results from nursing and psychosocial research within Swedish pediatric oncology
- 2014
-
Ingår i: Journal of Nursing & Care. - : OMICS Publishing Group. - 2167-1168. ; 3:6, s. 1-8
-
Forskningsöversikt (refereegranskat)abstract
- The body of research-based knowledge in paediatric caring science has been increasing leading to dramaticimprovements in treatment. The purpose of this manuscript was to analyze results as stated by the researchers', inrecently published articles on nursing and psychosocial research, within Swedish pediatric oncology setting. Thiswas done through a review of 137 published articles about paediatric oncology related to caring science in Sweden.The result shows that the illness has affected, in both positive and negative ways, the wellbeing of everyone cominginto contact with the child. The cancer also causes distress related to all aspects of life including physical,psychological, existential and social. Mediating factors for the experience of distress and wellbeing are: disease andtreatment severity, age, gender and ethnicity of the participant, time since diagnosis, the use of internal and externalsupport, and the identity of the person reporting the data. Health promoting aspects frequently reported are: familytogetherness, coping strategies, engaging in normal life and activities, and quality of care which includes emotionalsupport, information and family participation in care. The hospital staff has to be aware of the psychosocial issuesexperienced by children with cancer and their families, and they have to acknowledge the value of formalinterventions, reporting benefits for children, families, and themselves.
|
|
| 18. |
- Enskär, Karin, et al.
(författare)
-
A Swedish perspective on nursing and psychosocial research in paediatric oncology : A literature review
- 2015
-
Ingår i: European Journal of Oncology Nursing. - Amsterdam : Elsevier. - 1462-3889 .- 1532-2122. ; 19:3, s. 310-317
-
Tidskriftsartikel (refereegranskat)abstract
- Purpose: A dramatic improvement in outcomes of survival rates of childhood cancer has been seen. Caring science research is central in providing skills and knowledge to the health care sector, but few overviews of the content of published research have been carried out. The aim of this review was to investigate the content and methodology of published studies in paediatric oncology relevant to caring science, and also to compare possible differences in content and method of the published studies from the nursing and psychosocial perspectives. Method: A systematic literature review was performed of 137 published articles on paediatric oncology relevant to caring science in Sweden. Results: The results show that most of the studies were descriptive or comparative ones with a quantitative design. Most of them focused on parents (43%) or children (28%). Most of the studies investigated wellbeing (88%), using questionnaires (54%) or interviews (38%). Several different measurement instruments had been used. While the results were often clearly presented, the clinical implications were more diffuse. The most acknowledged research fund was the Swedish Childhood Foundation (75%). Conclusions: To reflect the children' perspectives in paediatric oncology require that future researchers take on the challenge of including children (even young ones) in research. The use of a limited number of agreed measurement instruments is desirable. The biggest challenge for the future is to make a shift from explorative to intervention studies. There is an urgent need to transform research results into clinical practice. (C) 2014 Elsevier Ltd. All rights reserved.
|
|
| 19. |
- Enskär, Karin, et al.
(författare)
-
An analytic review of clinical implications from nursing and psychosocial research within Swedish pediatric oncology
- 2015
-
Ingår i: Journal of Pediatric Nursing. - Amsterdam : Elsevier. - 0882-5963 .- 1532-8449. ; 30:4, s. 550-559
-
Tidskriftsartikel (refereegranskat)abstract
- The purpose of this manuscript is to analyze researchers' suggestions for clinical implications of their findings as stated in recent published articles on nursing and psychosocial research within the setting of Swedish pediatric oncology. Identified categories included staff awareness of the effects of child illness on families; systems for care improvement; provision of quality of care, education and support; and empowerment of children and families. In order to be able to realize these clinical suggestions, expanded research is needed as well as continued education and support for staff.
|
|
| 20. |
- Enskär, Karin, et al.
(författare)
-
Experiences of Young Children With Cancer and Their Parents With Nurses' Caring Practices During the Cancer Trajectory.
- 2020
-
Ingår i: Journal of Pediatric Oncology Nursing. - : Sage Publications. - 1043-4542 .- 1532-8457. ; 37:1, s. 21-34
-
Tidskriftsartikel (refereegranskat)abstract
- Children with cancer require repeated hospitalizations and the family's everyday life and routines undergo change. Concrete descriptions of how nurses act when caring for children with cancer throughout the various phases of care and treatment are sparsely highlighted in the literature. The aim of this study was to describe young children with cancer and their parents' experiences of nurses' caring practices over a 3-year period, from diagnosis to follow-up. This study is based on semistructured interviews with 25 children newly diagnosed with cancer, aged 1 to 6 years, and their parents, connected to a pediatric oncology unit in Sweden. Child and parent data were analyzed with a deductive content analysis using Swanson's theory of caring. The result shows that nurse care practices directed toward young children with cancer and their parents are to some extent similar across a 3-year period from diagnosis to follow-up but also differ in some ways. Nurses' caring practices aim to support children and parents in the transition to a "new normal." Child- and family-friendly care processes include the following: creating hope and a trustful relationship, asking rather than assuming, providing knowledge and information, performing tasks skillfully, displaying an interest in the child's and parents' life outside the hospital, and helping the family to trust in the future and other health care providers. Based on these results, we recommend the development of a standardized and structured nursing care plan or clinical guideline with detailed information on how to carry out clinical nurse care practices in the different phases.
|
|
| 21. |
- Enskär, Karin, et al.
(författare)
-
Undocumented refugee children in Swedish healthcare : Nurses' knowledge concerning regulations and their attitudes about the care
- 2012
-
Ingår i: Vård i Norden. - : Sykepleiernes Samarbeid i Norden. - 0107-4083 .- 1890-4238. ; 32:1, s. 75-78
-
Tidskriftsartikel (refereegranskat)abstract
- The aim of this study was to investigate nurses’ attitudes about care for undocumented refugee children and also to investigate the knowledge among nurses concerning the regulations for this care. The study is quantitative and based on a questionnaire sent to all nurses working in pediatric healthcare and medical care in a medium-sized county in Sweden. The overall response was 91 questionnaires (55.9%). Most of the respondents felt insecure or lacked knowledge of what regulations are valid when undocumented refugee children seek medical care or healthcare. Almost all nurses had a positive attitude toward caring for these children, but they feel they lack knowledge about the regulations regarding their care. To optimize the care situation for these children the regulations should be reviewed and altered to allow the nurse, legally and securely, to care for them.
|
|
| 22. |
- Gimbler Berglund, Ingalill
(författare)
-
Developing guidelines in nursing care of children with Autism Spectrum Disorder in high technology health care settings
- 2017
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Introduction. The high technology environment such as a radiology and anaesthesia department in a typical health care setting can many times be a frightening environment for children. Children with neurodevelopmental disorders, such as Autism Spectrum Disorder (ASD), have problems with communication and social interaction. They are dependent on routines and can have higher sensitivity to sensory stimuli than other children. These children are one group who constitutes special challenges in reducing anxiety and creating participation in a high technology environment. This can make them prone to frightening encounters in health care settings if not cared for with special consideration.Aim: The overall aim of this thesis was to audit and enhance the care of children in a high technology environment in the health care system with a focus on children with Autism Spectrum Disorder.Methods: A descriptive design was used with both qualitative and quantitative methods. In Study I, 32 nurse anaesthetists were interviewed to explore the actions and experiences of caring for children in a high technology environment using a qualitative method, known as the Critical Incident Technique (CIT). In the two following studies (Study II, III) a cross-sectional design was used and two national surveys were performed to obtain knowledge on the status in Sweden regarding the care of children with ASD in high technology environments. Sixty-eight anaesthesia departments, 38 paediatric departments and 86 radiology departments responded to the survey. Descriptive statistic was used for the answers apart from the comments part of the questionnaire where qualitative content analysis was used. Due to the limited existence of guidelines in these environments, the creation ofevidence-based guidelines was performed in Study IV, using a Delphi method. The Delphi study was based on information gleaned from the previous studies and from the literature, and 21 experts identified in Study II and III were the expert panel developing the guidelines.Result: Nurses identified children with special needs such as children with ASD as a vulnerable group in a high technology environment (Study I). Seven departments in the anaesthesia context had guidelines for caring for children with ASD in the perioperative context. In the other departments, the care of children with ASD was dependent on the knowledge of the nurse presently working there (Study II). None of the radiology departments in Sweden had guidelines on how to care for children with ASD going through a radiographic examination without anaesthesia (Study III). As a result of Study I, II and III, the need for structured guidelines for caring for children with ASD in a high technology context was identified and a set of guidelines and a checklist was created. The guidelines relate to the organisational structure for the care of children with deficits in social interaction, communication, sensory sensitivity and dependence on routines. The checklist relates to gleaning information about the specific child to be able to give person-centred care based on the specific characteristic of the child (Study IV).Conclusion: Nurses working in a high technology environment in health care have diverse experiences of preventing anxiety in children with ASD coming for a challenging procedure. There are a limited number of evidence-based guidelines to decrease anxiety and to create participation in this group ofchildren. Evidence-based guidelines were created as a tool for enhancing person-centred care in a high technology environment for this group of children. The fact that several problems are assembled under one disorder makes ASD a useful condition to have as a basis for formulating national guidelines. Guidelines that cater for the care of children with ASD in a high technology environment using a person-centred approach may also extend to the care for children with other neurodevelopmental disorders that exhibit some of the same problems as children with ASD.
|
|
| 23. |
|
|
| 24. |
- Gimbler Berglund, Ingalill, et al.
(författare)
-
Management of children with Autism Spectrum Disorder in the anesthesia and radiographic context
- 2017
-
Ingår i: Journal of Developmental and Behavioral Pediatrics. - : Wolters Kluwer. - 0196-206X .- 1536-7312. ; 38:3, s. 187-196
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: As a primary objective, this study purports to develop guidelines to better care for children with autism spectrum disorder (ASD), particularly regarding these children's preparation for anesthesia and radiologic procedures.Methods: Using a Delphi method with an online distribution of questionnaire, guidelines for caring for children with ASD were created. Twenty-one participants were included in the expert panel. These participants were working with children with ASD in several anesthesia and radiology departments in Sweden. A list of items was created from a previous survey and the literature. In the first round, the items with <60% agreement were discarded. Items were merged, and a new list was created. Two more similar rounds were performed. In the last 2 rounds, 21 participants responded, and 80% agreement was considered to be consensus.Results: The final guidelines consisted of 14 items and a checklist of 16 factors. The 5 areas covered by the items and the checklist were as follows: planning involving parents/guardians, features in the environment, and use of time, communication, and the health care professionals. The organization was important in making it possible for the health care professional to care for the individual child according to the child's needs. It was important to involve the parents/guardians to obtain knowledge about the functioning of the child.Conclusion: A caring encounter involving a child with ASD in the anesthesia and radiology contexts requires advance planning, catered specifically to the individual needs of each child. To accomplish this, general knowledge regarding ASD and ASD's particular manifestation in the child entrusted to their care, is required from the health care workers. The organization needs to have structures in place to facilitate this process.
|
|
| 25. |
- Gimbler Berglund, Ingalill, et al.
(författare)
-
Perioperative and anesthesia guidelines for children with autism : A nationwide survey from Sweden
- 2016
-
Ingår i: Journal of Developmental and Behavioral Pediatrics. - : Wolters Kluwer. - 0196-206X .- 1536-7312. ; 37:6, s. 457-464
-
Tidskriftsartikel (refereegranskat)abstract
- Objective: The overall aim of this study was to describe the current set of guidelines for the preparation and care for children with autism spectrum disorder (ASD) in the perioperative setting across Sweden and explore the content of these guidelines in detail.Method: An online questionnaire was distributed to the chairpersons of all anesthesia departments (n = 68) and pediatric departments (n = 38) throughout Sweden. Follow-up phone calls were made to those departments that did not return the questionnaire. The presence of guidelines was analyzed through descriptive statistics. These guidelines and comments on routines used in these departments were analyzed inspired by conventional content analysis.Results: Seven of the 68 anesthesia departments and none of the 38 pediatric departments across Sweden have guidelines for preparing and/or administering care to children with ASD within the perioperative setting. From the guidelines and routines used, 3 categories emerge: "lacking the necessary conditions," "no extra considerations needed," and "care with specific consideration for children with ASD." These 3 categories span a continuum in the care. In the first category, the anesthesia induction could result in the child with ASD being physically restrained. In the last category, the entire encounter with the health care service would be adapted to the specific needs of the child.Conclusion: There is a lack of evidence-based guidelines specifically designed to meet the needs of children with ASD in the preoperative period in Sweden. Further research is needed to understand if children with ASD would benefit from evidence-based guidelines.
|
|
