Psychosocial problems, coping strategies, and the need for information of parents of children with Prader–Willi syndrome and Angelman syndrome

Borne, H.W. van den; Hooren, R.H. van; Gestel, M Van; Rienmeijer, P; Fryns, Jean‐Pierre; Curfs, Leopold

doi:10.1016/s0738-3991(99)00004-x

Cited by 33 publications

(29 citation statements)

References 17 publications

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“…Baine et al [1995] noted that education and information are among the aspects of care valued most by parents of children with disabilities. Several other studies have emphasized a high need for information in the parents of children with chronic disabilities [Green and Murton, 1996;van den Borne et al, 1999]. Likewise, in our study, the overwhelming majority of caregivers expressed a desire to have all of the possible information at the time of diagnosis.…”

Section: Discussionsupporting

confidence: 53%

Cornelia de Lange syndrome: Parental preferences regarding the provision of medical information

Hinkson

Atenafu

Kennedy

et al. 2006

American J of Med Genetics Pt A

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We surveyed 57 caregivers of children with Cornelia de Lange syndrome (CdLS) using a self-report questionnaire designed to elicit their experiences with receiving information regarding health complications associated with this multisystem disorder. Their most frequent sources of information at the time of diagnosis were a health care provider (86%) and the CdLS Foundation (72%). Although most caregivers (82%) indicated a desire to receive information about all possible CdLS related health complications, on average they recalled receiving information on only 64% of their child's current or future health complications. For two of the top three complications (as ranked by caregivers), information was available to fewer than half of the caregivers at diagnosis. Only 40% of caregivers were satisfied with the amount of information received at diagnosis, while only 45% felt that the information they received was useful. Caregivers indicated a preference for receiving information in written format (59%) or verbally (39%). Our results indicate that caregivers of children with CdLS report a high need for information at diagnosis, regarding their child's actual or potential health complications. Dissatisfaction may result both from a deficiency in information provided, as well as a mismatch between issues mentioned and those that caregivers deem most important. Caregivers may benefit maximally from receiving information in person at the time of diagnosis as well as having an additional written source of information. These findings highlight the importance of complementary sources of information for caregivers and are likely to be relevant for other multisystem disorders.

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Section: Discussionsupporting

confidence: 53%

Cornelia de Lange syndrome: Parental preferences regarding the provision of medical information

Hinkson

Atenafu

Kennedy

et al. 2006

American J of Med Genetics Pt A

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“…Of these described characteristic phenotypes, the problems most difficult to manage are hyperphagia; stubborn behavioral patterns; challenging, aggressive, oppositional and manipulative behaviours; food theft and lying, which become more frequent and severe with increasing age [8][9][10][11] . Parents and caregivers of people with PWS are routinely faced with two types of problems; the control of access to food to avoid and/or minimize other health problems (such as obesity, scoliosis, and cardiovascular and endocrine illnesses) 12 , and family burden, especially on the primary caregiver, due to the difficulties in the management of behavioral problems that start from early childhood 13,14,15 . Although scientific evidence has shown the neurobiological basis of the behavioral changes and patterns of hyperphagia, interventions which involve giving guidance to parents and caregivers in respect of parenting practices and the management of the children's behavioral problems are considered to be a priority; previous studies report that these interventions can not only improve a range of behavioral indicators in the children but also help support the caregiver in relation to the emotional difficulties they face [16][17][18][19][20][21] .…”

Section: Introductionmentioning

confidence: 99%

Treino parental para manejo comportamental de crianças com Síndrome de Prader-Willi: impacto sobre a saúde mental e práticas educativas do cuidador

et al. 2016

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RESUMO Objetivo: verificamos os indicadores de impacto na saúde mental de cuidadores de um programa de treinamento parental para manejo de crianças e adolescentes com Síndrome de Prader-Willi. Métodos: a amostra foi composta por 5 mães de crianças/adolescentes com Síndrome de Prader-Willi entre 6 a 18 anos. Os instrumentos de coleta de dados foram: a) Questionário para verificação de conhecimentos das mães sobre a síndrome, b) Inventário de Auto-avaliação para Adultos de 18 a 59 anos, c) Inventário de Estilos Parentais/Práticas educativas maternas e paternas; d) Levantamento de dificuldades e preocupações sobre os filhos. O estudo foi realizado em quatro fases: pré-intervenção, intervenção, pós-intervenção e seguimento. Resultados: as mães passaram a adotar práticas parentais educativas baseadas na monitoria positiva, diminuíram as práticas de risco. Conclusão: houve melhora em indicadores de dificuldades emocionais das mães, apreenderam a identificar e manejar fatores que prejudicavam a saúde física, o comportamento e a aprendizagem escolar dos filhos e a necessidade do envolvimento de outros familiares no cuidado do filho.

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“…We interpret this response pattern as meaning that many parents believe that telling the child about the prognosis of PWS will decrease its well‐being. A recent study by van den Borne et al . (1999) attests to the fact that mothers of PWS children tend to think that the child's knowledge of its likely future puts an unnecessary psychological burden on the child; they are also particularly prone to worry about the negative psychosocial consequences of the syndrome for the affected children.…”

Section: Discussionmentioning

confidence: 97%

Prader–Willi syndrome: clinical picture, psychosocial support and current management

Wigren

Hansen

2003

Child

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Psychosocial problems, coping strategies, and the need for information of parents of children with Prader–Willi syndrome and Angelman syndrome

Cited by 33 publications

References 17 publications

Cornelia de Lange syndrome: Parental preferences regarding the provision of medical information

Cornelia de Lange syndrome: Parental preferences regarding the provision of medical information

Treino parental para manejo comportamental de crianças com Síndrome de Prader-Willi: impacto sobre a saúde mental e práticas educativas do cuidador

Prader–Willi syndrome: clinical picture, psychosocial support and current management

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