The concept of “marginality” applied to psychosomatic medicine.

Friedman, Scott

doi:10.1097/00006842-198809000-00001

Cited by 7 publications

(3 citation statements)

References 5 publications

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“…Children with less severe impairments may experience more psychosocial problems because they have difficulties with identifying themselves with either healthy or more severely impaired peers. 24 Family research in MMC also supports this hypothesis: mothers of children with a higher degree of physical impairment reported more attachment to the children, less family conflict, and a greater willingness to include them in decision-making processes. 25 Parents of children with high lesion levels may accept more fully the extent of their child's disability compared with parents of children with intermediate level of lesions, who may try to 'normalize' functioning as much as possible and place considerable strain on their child.…”

Section: Discussionmentioning

confidence: 87%

Self‐reported health‐related quality of life in children and adolescents with myelomeningocele

Müller–Godeffroy

Michael

Poster

et al. 2008

Develop Med Child Neuro

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The aim of the study was to investigate self‐reported health‐related quality of life (HRQOL) in children and adolescents with myelomeningocele (MMC) and to examine the impact of clinical impairments and limitations in activities of daily living (ADL). Fifty patients (28 females, 22 males) between 8 and 16 years of age (mean age 12y 1mo [SD 2y 4mo]) with MMC from three German paediatric centres and their mothers completed standardized measures on HRQOL (KINDL‐R) and limitations in ADL (Childhood Health Assessment Questionnaire). Lesion level was thoracic in nine, sacral in 25, and lumbosacral in 11 patients. Twenty‐one patients were community walkers, 17 were able to walk in the home, and seven used a wheelchair. Two‐thirds had health problems related to the central nervous system causing current difficulties (eight patients had a shunt, six had hydrocephalus, and 10 had a tethered cord). Patients in the study group reported diminished overall HRQOL compared with norm data, specifically in the dimensions of emotional well‐being, self‐esteem, and peer relations. Adolescents reported diminished HRQOL in the dimension of peer relations. Most medical parameters as well as limitations in ADL were not significantly associated with HRQOL. Our findings confirm the results of studies which dispute a linear inverse association between condition severity and HRQOL and emphasize the importance of peer relations in young patients with MMC.

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Section: Discussionmentioning

confidence: 87%

Self‐reported health‐related quality of life in children and adolescents with myelomeningocele

Müller–Godeffroy

Michael

Poster

et al. 2008

Develop Med Child Neuro

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“…Marginality in the context of disability is a state characterized by an ambiguous selfperception that includes aspects of an identity as a healthy person as well as a disabled person [47]. Thus, children and adolescents with a less severe impairment may develop more problems with emotional and social adjustment because it is difficult for them to identify with healthy peers as well as with peers who are more severely impaired.…”

Section: Discussionmentioning

confidence: 99%

Experiences among children and adolescents of living with spina bifida and their visions of the future

Strömfors

Wilhelmsson

Falk

et al. 2016

Disability and Rehabilitation

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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.

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“…chemotherapy). Friedman (1988) found that those with ‘hidden disabilities’ tend to suffer more emotional problems and experience greater difficulties with psychosocial adjustment compared with those whose disabilities are more visible. The literature shows that, for children with traumatic brain injuries, behavioural and social difficulties can persist even if and when cognitive impairment resolves (e.g.…”

Section: Introductionmentioning

confidence: 99%

Perspectives on neuropsychology and clinical care in paediatric and adolescent medicine

Griffin

Deeba

Dennison

et al. 2020

Clin Child Psychol Psychiatry

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As a child and adolescent neuropsychology service based within a paediatric psychology team at a large teaching hospital, we meet children and young people across the age range who experience cognitive impairment as a result of long-term health conditions or traumatic brain injury. We have a remit of providing a neuropsychological assessment and report. Typically, a neuropsychology report includes recommendations for home and for school. However, research suggests that their uptake is variable and depends on the understanding and resources of families and school systems. As a stretched service, we have very limited capacity to follow the work through to the extent that we might like. Therefore, we are always seeking effective ways to support the ongoing adaptation and implementation of the assessment recommendations in the child’s various day-to-day contexts. We address both the cognitive functioning and the psychological well-being of the child as a unified whole. Drawing on systemic ideas influences our communications with children, families, schools and the medical teams in ways which help bridge the gap between hospital-based assessment and everyday life. This article describes how we are integrating our systemic and neurodevelopmental perspectives to make the assessment and the findings a meaningful intervention in themselves. We consider ways of sharing neuropsychology findings which promote the child’s psychological well-being in their different contexts: hospital, home, school, community and culture.

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The concept of “marginality” applied to psychosomatic medicine.

Cited by 7 publications

References 5 publications

Self‐reported health‐related quality of life in children and adolescents with myelomeningocele

Self‐reported health‐related quality of life in children and adolescents with myelomeningocele

Experiences among children and adolescents of living with spina bifida and their visions of the future

Perspectives on neuropsychology and clinical care in paediatric and adolescent medicine

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