Brief Report: Parental Perceptions of Child Vulnerability in Children With Chronic Illness

Anthony, Kelly K.; Gil, Karen M.; Schanberg, Laura E.

doi:10.1093/jpepsy/jsg005

Cited by 94 publications

(75 citation statements)

References 24 publications

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“…It is well known that the effect of parental relationship on psychosocial outcomes of children with chronic diseases can be very variable ranging from parental overprotection 15,16 and parental perceptions of child vulnerability 17 to distress. 18 Nonetheless, some participants reported a positive experience of parental care and an appropriate balance between dependence and autonomy.…”

Section: Discussionmentioning

confidence: 99%

Mood and illness experiences of adults with cystinosis

et al. 2015

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Background: Cystinosis is an autosomal recessive disorder with an estimated incidence of 1/100,000-200,000 live births. The main complications are renal disease, visual impairment, endocrine abnormalities and growth retardation. Objective: Our aim was to describe the mood and illness experiences of adults with cystinosis. Methods: Twenty-three patients attending the adult cystinosis clinic at Guy's Hospital, London were asked to complete the Hospital Anxiety and Depression Scale (HADS) questionnaire anonymously. Eighteen months later, 21 patients who were still alive were invited to participate in a semi-structured interview aimed at exploring illness experience. Results: Eighteen patients completed the HADS questionnaire (means: depression ¼ 7.2; anxiety ¼ 9.2), and 12 participated in the interviews. Three significant themes emerged: (i) the main physical complaints were tiredness, the impact of short stature and side effects of cysteamine medication, especially halitosis, poor taste and nausea. (ii) Cystinosis has a major impact on relationships, autonomy and social life, including reliance on families for support to self-manage, distress at dependence, social anxiety, reduced social involvement and some positive effects on family cohesiveness. (iii) Patients use a range of individual coping strategies to deal with their illness and medication. Conclusions: Adult cystinosis patients reported comparatively high-anxiety and depression scores. Common complaints related to the complications of cystinosis and the side-effects of cysteamine, which impacted on relationships, autonomy and social life. Patients described a wide range of strategies, including benefit finding, for coping with cystinosis.

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Section: Discussionmentioning

confidence: 99%

Mood and illness experiences of adults with cystinosis

et al. 2015

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“…They were scheduled outpatients at the dermatology department of a tertiary university hospital. The selection criteria were as follows: (a) having a atopic dermatitis diagnosis, (b) being in medical treatment during the study, and (c) being classifi ed as "clinical for internalizing and/or externalizing problem behavior" through the results of the CBCL-6/18 (Achenbach & Rescorla, 2001), which was taken by their respective mothers.…”

Section: Participantsmentioning

confidence: 99%

“…The participants' recruitment was taken in the Department of Dermatology, where the mothers were interviewed by the fi rst author and completed the CBCL-6/18 (Achenbach & Rescorla, 2001) about their children. The materials used during this phase was a digital audio recorder and some blank sheets.…”

Section: Settings and Materialsmentioning

confidence: 99%

“…Child Behavior Checklist for Ages 6/18 (CBCL-6/18; Achenbach & Rescorla, 2001). The CBCL-6/18 consists of 118 items for emotional and behavioral problems and 20 items concerning to activities, sociability and academic activities in children aged 6-18 years.…”

Section: Instrumentsmentioning

confidence: 99%

“…Child Behavior Checklist for Ages 6/18 (CBCL-6/18; Achenbach & Rescorla, 2001). For emotional and behavioral problems the results are aggregated into a total problems score in two broadband scores (internalizing and externalizing), and all raw scores were converted to T-Scores, as follow: T-score < 63 are in the non-clinical range, T-score between 60 to 63 are in borderline range and T-score > 63 are in the clinical range.…”

Section: Measurementmentioning

confidence: 99%

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Compliance to Mothers’ Instructions with Medical Treatment

Zazula¹,

Gon²

2017

Temas Psicol.

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Atopic dermatitis is a chronic skin disease with unknown etiology and high incidence in childhood. Although the response of following medical recommendations is an important behavior to control the symptoms, there are high rate responses of nonfollowing prescriptions, described as noncompliance. This study evaluated, in a brief direct assessment, the control exerted by direct and indirect instructions, verbalized by mothers, in compliance with medical treatment. Four girls, ages 9, 12, 13 and 14, diagnosed with atopic dermatitis and theirs mothers. They were scheduled outpatients at the dermatology department of a tertiary university hospital. The behavioral assessment was conducted according to a brief multielement experimental design in three phases. The use of direct instructions increased the probability of compliance behaviors, especially when associated with physical guide and praise. The results of this study can be important to identify the most important variables in the treatment of children with atopic dermatitis and to develop group or individual intervention programs.Keywords: Instructions, compliance, behavioral assessment, atopic dermatitis. Obediência às Instruções Maternas em Situação de Tratamento Médico ResumoA dermatite atópica é uma doença crônica de pele com etiologia desconhecida e alta incidência na infân-cia. Embora a emissão de respostas para o seguimento de recomendações médicas seja um importante comportamento para o controle dos sintomas, existe elevadas taxas de respostas de não seguimento das recomendações médicas, compreendida como desobediência ou não adesão. O presente estudo avaliou, em uma breve avaliação direta, o controle exercido por instruções diretas e indiretas, verbalizadas pelas mães, no comportamento de obediência às em situação de tratamento médico. Participaram do estudo quatro meninas, com idades entre 9 e 14 anos, diagnosticadas com dermatite atópica e suas mães. Elas foram recrutadas no departamento de dermatologia de ambulatório de especialidades de um hospital escola. A avaliação comportamental foi realizada por meio do delineamento experimental de multielementos, realizado em três fases. O uso de instruções diretas aumentou a probabilidade de emissão de comportamentos de obediência, especialmente quando associados ao uso de condução física e elogios.

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The Current Revolution in Newborn Screening

Tarini¹

2007

Arch Pediatr Adolesc Med

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Newborn screening has provided a model of a successful public health screening program for the past 40 years. However, the history of newborn screening is not without controversy. Many of these controversies have been rekindled with the introduction of tandem mass spectrometry, a technology that has greatly increased our ability to detect potential disease in asymptomatic newborns. This review highlights the challenges raised by this and future technological advances as we strive to maintain the success of newborn screening in the 21st century.

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Brief Report: Parental Perceptions of Child Vulnerability in Children With Chronic Illness

Abstract: Health providers should assess parental beliefs and parenting practices in assessing the adjustment of children with chronic illness. Moreover, interventions aimed at enhancing child adjustment to chronic illness might best target parents as well as children.

Cited by 94 publications

References 24 publications

Mood and illness experiences of adults with cystinosis

Mood and illness experiences of adults with cystinosis

Compliance to Mothers’ Instructions with Medical Treatment

The Current Revolution in Newborn Screening

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