Abstract:
:Purpose Transitioning to independence may be problematic for persons with spina bifida (SB). Experiences of young persons with SB may provide insights into this group's needs for support. Therefore, the aim of this study was to investigate children's and adolescents' experiences of living with SB, their social and emotional adjustment, and their thoughts about becoming independent adults. Method Semi-structured interviews were conducted with young persons with SB (N = 8, age range 10-17 years). Social and emotional problems were assessed using Beck Youth Inventories. The interview transcripts were analyzed using qualitative content analysis. Results Three main themes were found: being a person with SB; everyday living as a person with SB; and preparing for life as an adult with SB. Indications of emotional and social problems were most prominent among participants with milder physical disability. Conclusions The findings indicate that young persons with SB may overestimate their independence. Other potentially problematic areas were lack of motivation, planning and preparedness for becoming independent. Research on transition to independence in this group should consider assistance at an early age in planning and executing strategies for independence. In addition, the potentially difficult situation for young persons with mild SB should be investigated further. Implications for rehabilitation Children and adolescents with spina bifida might lack the motivation and skills for planning their future and health care programmes should therefore include preparations for life as an adult. Clinical assessment of the level of independence should specifically distinguish between the activities they know how to do and what tasks they actually execute independently. Routine follow-ups should include screening for problems with social and emotional adjustment. Be aware of a potential condition-severity paradox whereby those with less severe impairment might have an increased risk of developing symptoms of social and emotional problems.
journal_name
Disabil Rehabiljournal_title
Disability and rehabilitationauthors
Strömfors L,Wilhelmsson S,Falk L,Höst GEdoi
10.3109/09638288.2016.1146355subject
Has Abstractpub_date
2017-02-01 00:00:00pages
261-271issue
3eissn
0963-8288issn
1464-5165journal_volume
39pub_type
杂志文章abstract:PURPOSE:To describe and evaluate the establishment of the first VCT services for the Deaf in Africa. METHOD:Operational research methods were used to document programme establishment. The demographics of deaf VCT clients were compared with hearing clients at the same sites as well as where clients had learned of the s...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280802133115
更新日期:2009-01-01 00:00:00
abstract:PURPOSE:The aim of this study was to examine relatives' perception of an assistive technology intervention aimed at persons with dementia (PwDs) and their relatives, and to examine whether, and how, experiences of the intervention process differed between relatives valuing the intervention to be of high, and relatives ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.743603
更新日期:2013-08-01 00:00:00
abstract:PURPOSE:To review research that examined the participation in activities of children who have cerebral palsy, in order to understand their extent of participation and the factors that influenced participation. METHODS:A comprehensive search of seven databases retrieved 2,111 papers, 40 of which met criteria and were r...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.1080/09638280701673542
更新日期:2008-01-01 00:00:00
abstract::Purposes: Enhancing children's daily participation is the optimal goal of early childhood intervention. This study aimed to identify child and family predictors of participation for toddlers with global developmental delay. Methods: Fifty-nine toddlers with global developmental delay (aged 24-43 months) and their moth...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2019.1678685
更新日期:2019-10-24 00:00:00
abstract:PURPOSE:To describe activity level, operationalized as ADL capacity and performance of occupations, and occupational balance, operationalized as time use and satisfaction with occupations, in women with limited systemic sclerosis, and to investigate the relationship between these occupational factors and disease charac...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638280701190083
更新日期:2008-01-01 00:00:00
abstract:PURPOSE:In girls and women with Rett syndrome, we assessed the accuracy of the StepWatch Activity Monitor™ and investigated relationships between daily step counts, gross motor skills and age. METHOD:Twelve subjects (age 12.9 ± 8.0 years) participating in the Australian Rett Syndrome Database wore a StepWatch during a...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2011.630773
更新日期:2012-01-01 00:00:00
abstract:PURPOSE:To summarize the potential origins of fatigue poststroke from a neuromuscular perspective, including stroke-induced alterations at the cortical, spinal and muscle levels. METHOD:Perspective based on narrative literature review. RESULTS:Fatigue is a highly prevalent, but poorly understood symptom poststroke. N...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.683233
更新日期:2012-01-01 00:00:00
abstract:PURPOSE:To identify the characteristics of peer-reviewed literature on community-based rehabilitation (CBR) in low- and middle-income countries published in English from 2003 to 2012. METHODS:This scoping review involved a systematic search of electronic databases using specific keyword/subject heading combinations. J...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,评审
doi:10.3109/09638288.2013.845257
更新日期:2014-01-01 00:00:00
abstract::As in other developing countries, community-based rehabilitation (CBR) in China is very important. However, because of differences in the social system, economy, and cultural level, it is impossible to implement a uniform model of CBR. This paper introduces material to show how CBR in China tends to be spontaneous. Ex...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638289209167080
更新日期:1992-04-01 00:00:00
abstract::Purpose: Although measuring outcome of rehabilitation in children with Developmental Coordination Disorder is considered important no consensus exists on which instruments to use. An important attribute of a measurement instrument would be that it is sensitive to clinical changes. The aim of this prospective, observat...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2020.1785022
更新日期:2020-07-02 00:00:00
abstract::Purpose: Decision making regarding upper limb assessment and management of children and young people (CYP) with acquired brain injury (ABI) is complex. This project aimed to standardise and improve upper limb provision in one residential rehabilitation unit for CYP with ABI. Methods: Plan-do-study-act (PDSA) methodolo...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2020.1761891
更新日期:2020-05-20 00:00:00
abstract:PURPOSE:Impairment of language ability, aphasia, can cause barriers to communication and hence impact on participation in many life situations. This study aimed to describe and explore how persons with aphasia following stroke experience engaging in everyday occupations. METHOD:Six persons from Southwest Finland who h...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2012.759628
更新日期:2013-10-01 00:00:00
abstract:PURPOSE:To assess construct (convergent and divergent) validity of the Pediatric Evaluation of Disability Inventory Computer Adaptive Test (PEDI-CAT) in a sample of children with complex medical conditions. METHOD:Demographics, clinical information, PEDI-CAT normative score, and the Post-Acute Acuity Rating for Childr...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2016.1226406
更新日期:2017-11-01 00:00:00
abstract::Purpose: The purpose of this review was to synthesize the literature about spinal cord injury and employment, focusing on sample demographics, indicators of employment outcome, and the methods used. The review included literature from the previous decade; 2006-2017. Methods: A systematic quantitative literature review...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1467968
更新日期:2019-10-01 00:00:00
abstract::Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals' documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.Methods: The medical records of 39 ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2019.1573383
更新日期:2020-09-01 00:00:00
abstract::Minor head injury accounts for 95% of all head injury. In this study 62 patients, hospitalized after minor head injury, were assessed within 48 h, and invited to attend for review and retesting 3 months later. Thirty-five patients were followed up in this way and 11 more were interviewed over the telephone. There was ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638289609166306
更新日期:1996-05-01 00:00:00
abstract:PURPOSE:Parental involvement in the rehabilitation process of deaf and hard of hearing (DHH) children is considered vital to children's progress. Today, fathers are more likely to be involved in their children's care. Nevertheless, father involvement has been understudied and relatively little is known about their invo...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1297491
更新日期:2018-06-01 00:00:00
abstract:PURPOSE:To raise professional awareness of factors that may influence the support offered by clinicians to people with acquired brain injury (ABI), and to consider the potential implications of these factors in terms of post-injury rehabilitation and living. METHOD:A review of the literature was conducted to identify ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2013.766270
更新日期:2013-01-01 00:00:00
abstract:PURPOSE:To investigate the extent to which selected individual, family and environmental variables were associated with participation of children who have cerebral palsy in activities outside school. METHODS:Data were gathered through a population-based survey of 114 children born in 1994 or 1995 in Victoria, Australi...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638280902971406
更新日期:2009-01-01 00:00:00
abstract:PURPOSE:To study social validity and perceived fairness of a new method for assessing general work ability in a sickness insurance context. Assessments are based on self-reports, combined with examinations by physicians, and, if needed, occupational therapists, physiotherapists and/or psychologists. MATERIALS AND METH...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2017.1401675
更新日期:2019-03-01 00:00:00
abstract:PURPOSE:Quality of life (QoL) is an important measure of the burden of disease and could be useful in evaluating patient management and practical interventions. The aim of this study was to explore the association of psychological and clinical variables with QoL in patients with multiple sclerosis (MS). METHODS:One hu...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2010.540292
更新日期:2011-01-01 00:00:00
abstract:PURPOSE:The purpose of the present study was to translate the Trinity Amputation and Prosthetics Experience Scale (TAPES) into Persian and to investigate its psychometric properties. METHOD:A sample of 182 Persian-speaker individuals with lower limb amputation completed the TAPES questionnaire, of whom 103 individuals...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2010.544838
更新日期:2011-01-01 00:00:00
abstract::Purpose: The aim of this article is to conceptualise the phenomenon of therapy-related parental stress in parents of children with a physical disability. Methods: Three models related to parental stress were reviewed, i.e., general parental stress, burden of caregiving in parents of children with physical disabilities...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2019.1646815
更新日期:2019-08-19 00:00:00
abstract:BACKGROUND:Walking is recommended for fibromyalgia, but the rate of adherence to this exercise is not known. Poor adherence to physical exercise can limit the effectiveness in health benefits. OBJECTIVES:To examine adherence to interventions that include walking for fibromyalgia and to explore its moderators among the...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,meta分析
doi:10.1080/09638288.2017.1347722
更新日期:2018-10-01 00:00:00
abstract::The Extended Activities of Daily Living scale was validated as an overall assessment of functional independence in stroke patients discharged from hospital. Analysis of results from 49 patients discharged from a stroke unit and 299 from a trial of domiciliary rehabilitation supported previous work indicating that the ...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638289209166426
更新日期:1992-01-01 00:00:00
abstract:PURPOSE:To examine the third version of the Spinal Cord Independence Measure (SCIM III) for reliability and validity in a multi-center cohort study. METHOD:Four hundred and twenty-five patients with spinal cord lesions from 13 spinal cord units in six countries from three continents were assessed with SCIM III and the...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,多中心研究
doi:10.1080/09638280601046302
更新日期:2007-12-30 00:00:00
abstract:PURPOSE:The aim of this consensus process was to decide on a first version of the ICF Core Set for patients with musculoskeletal conditions in the acute hospital. METHODS:The ICF Core Set development involved a formal decision-making and consensus process integrating evidence gathered from preliminary studies includin...
journal_title:Disability and rehabilitation
pub_type: 共识发展会议,杂志文章,评审
doi:10.1080/09638280400013990
更新日期:2005-04-08 00:00:00
abstract:PURPOSE:The aim of this study was to investigate associations between socio-demographic factors, experiences of positive/negative encounters with healthcare professionals, and the encounters' impact on the ability to return to work in a population of people on sick leave due to heart failure. METHODS:This was a cross-...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.3109/09638288.2015.1031289
更新日期:2016-01-01 00:00:00
abstract:PURPOSE:To examine the immediate and long-term effects of a walking-skill program compared with usual physiotherapy on physical function, pain and perceived self-efficacy in patients after total knee arthroplasty (TKA). METHOD:A single blind randomized controlled trial design was applied. Fifty-seven patients with pri...
journal_title:Disability and rehabilitation
pub_type: 杂志文章,随机对照试验
doi:10.3109/09638288.2013.770084
更新日期:2013-01-01 00:00:00
abstract::Purpose: A mental model is the collection of an individual's perceptions, values, and expectations about a particular aspect of their life, which strongly influences behaviors. This study explored orthopedic outpatients mental models of adherence to prescribed home exercise programs and how they related to mental mode...
journal_title:Disability and rehabilitation
pub_type: 杂志文章
doi:10.1080/09638288.2018.1466923
更新日期:2019-10-01 00:00:00