Stress, Locus of Control, and Family Cohesion and Adaptability in Parents of Children with Down, Williams, Fragile X, and Prader-Willi Syndromes

Lanfranchi, Silvia; Vianello, Renzo

doi:10.1352/1944-7558-117.3.207

Cited by 63 publications

(73 citation statements)

References 70 publications

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“…For example, child problem behaviors have consistently been suggested to play an important role in experienced strain (e.g., Baker et al, 2003; Neece, Green, & Baker, 2012; Osborne & Reed, 2009). Furthermore, research supports the notion that child factors may differentially contribute to levels of caregiver strain by diagnostic group (e.g., Abbeduto et al, 2004; Lanfranchi & Vianello, 2012). Child factors that have been explored extensively in this literature include adaptive and maladaptive behaviors, social/communication skills, and cognitive level (e.g., Baker et al, 2002, 2003; Davis & Carter, 2008; Neece & Baker, 2008; Weiss, Sullivan, & Diamond, 2003).…”

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confidence: 54%

“…For example, Abbeduto et al (2004) found that parents of children with ASD had higher levels of strain when compared with parents of children with Down syndrome, but lower than those of children with Fragile X. When comparing caregivers of children with four different genetic disorders, Lanfranchi and Vianello (2012) found that parents of children with Down syndrome had significantly less strain than those of children with Prader-Willi syndrome. Furthermore, Schieve et al, (2007) emphasized that the differences in strain between caregivers of children with ASD and DD were washed-out with the inclusion of a variable capturing their recent need for specialized services.…”

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confidence: 99%

“…Parent factors include a parent’s use of coping strategies and their locus of control, which help account for variations in level of strain (e.g., Dunn, Burbine, Bowers, & Tantleff-Dunn, 2001; Glidden & Natcher, 2009; Lanfranchi & Vianello, 2012). The double ABCX model, for example, has been highly researched and has resulted in a substantial ability to predict levels of strain among caregivers of children with intellectual and developmental disabilities (e.g., Saloviita, Italinna, & Leinonen, 2003).…”

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confidence: 99%

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Caregiver Strain and Sensory Features in Children With Autism Spectrum Disorder and Other Developmental Disabilities

Kirby¹,

White²,

Baranek³

2015

American Journal on Intellectual and Developmental Disabilities

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Caring for children with disabilities contributes to increased levels of parent stress, or caregiver strain. However, the potential relationship of sensory features to strain among caregivers of children with autism spectrum disorder (ASD) and other developmental disabilities (DD) is unknown. Sensory features include over-reactions, under-reactions, and unusual interests in sensations, which may negatively impact family functioning. This descriptive study confirmed three caregiver strain types (i.e., objective, subjective internalized, subjective externalized) and explored differences among ASD (n=71) and DD (n=36) groups, with the ASD group reporting higher levels. Furthermore, this study explored the contribution of sensory features to caregiver strain, finding differential contributions to strain in the ASD group and covariate contributions (i.e., child cognition, mother’s education) in the DD group.

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confidence: 54%

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confidence: 99%

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confidence: 99%

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Caregiver Strain and Sensory Features in Children With Autism Spectrum Disorder and Other Developmental Disabilities

Kirby¹,

White²,

Baranek³

2015

American Journal on Intellectual and Developmental Disabilities

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“…52,98 Based on a survey of 508 FXS families in 2011, one-third of mothers reported having seen a professional to treat depression, anxiety, or stress in the last year, and one-quarter reported taking prescription medication for these symptoms. 52,99 Stress is reported to be higher in families of children with FXS than those of children with Down syndrome, 100,101 which may be a result of increased child behavioral problems in FXS. 54, 102–104 …”

Section: Resultsmentioning

confidence: 97%

Implications of theFMR1Premutation for Children, Adolescents, Adults, and Their Families

Wheeler

Raspa

Hagerman³

et al. 2017

Pediatrics

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BACKGROUND AND OBJECTIVES Given the nature of FMR1 gene expansions, most biological mothers, and often multiple other family members of children with fragile X syndrome (FXS), will have a premutation, which may increase individual and family vulnerabilities. This article summarizes important gaps in knowledge and notes potential implications for pediatric providers with regard to developmental and medical risks for children and adolescents with an FMR1 premutation, including possible implications into adulthood. METHODS A structured electronic literature search was conducted on FMR1 pre- and full mutations, yielding a total of 306 articles examined. Of these, 116 focused primarily on the premutation and are included in this review. RESULTS Based on the literature review, 5 topic areas are discussed: genetics and epidemiology; phenotypic characteristics of individuals with the premutation; implications for carrier parents of children with FXS; implications for the extended family; and implications for pediatricians. CONCLUSIONS Although the premutation phenotype is typically less severe in clinical presentation than in FXS, premutation carriers are much more common and are therefore more likely to be seen in a typical pediatric practice. In addition, there is a wide range of medical, cognitive/developmental, and psychiatric associated features that individuals with a premutation are at increased risk for having, which underscores the importance of awareness on the part of pediatricians in identifying and monitoring premutation carriers and recognizing the impact this identification may have on family members.

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“…Na adolescência e na idade adulta, esses indivíduos apresentam um novo dilema, encontrar um lugar na sociedade, um trabalho, buscar a satisfação da vida pessoal. E, nessa última fase, consequentemente, as famílias vivenciam experiências maiores de incerteza e estresse 11 . Estudos revelam que a escolaridade dos pais e as condições financeiras deles podem ter relação com a qualidade de vida 27,28 .…”

Section: Discussionunclassified

<b>Stress in Parents of Children and Adolescents with Down Syndrome</b>

Oliveira

Eduardo

Prudente

et al. 2018

EVS

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Resumo: Estudo com objetivo de avaliar a presença de níveis de estresse geral e parental em pais de crianças e adolescentes com síndrome de Down. Trata-se de um estudo transversal e analítico, realizado em cinco Instituições que atendem pessoas com deficiência em Goiânia, Goiás. A amostra foi composta por 40 pais. Instrumentos de avaliação do estresse: Inventário de Sintomas de Estresse para Adultos de Lipp (ISSL), Parenting Stress Index Short Form (PSI/SF). Quanto à avaliação do estresse geral, por meio do ISSL: a maioria dos pais não estava estressada. Quanto à manifestação do estresse parental: o escore médio do estresse dos pais foi baixo. Entretanto, nas três subescalas e no questionário total, 35% dos pais apresentaram níveis de estresse considerado preocupante. Pais de adolescentes apresentaram escore médio mais alto do que pais de crianças, na subescala interação disfuncional genitor-criança (p=0,03). Houve maior proporção de pais de adolescentes com nível de estresse considerado preocupante (n= 54,50%, p=0,008). A comparação entre os dados socioeconômicos e o estresse parental revelou que o estresse é maior em pais com menos escolaridade. Os resultados chamam atenção para a necessidade de assistir a saúde emocional de pais de filhos com síndrome de Down, com foco para os pais de adolescentes.Palavras-chave: Pai. Síndrome de Down. Estresse. Abstract:The aim of this study is analysing the presence of worried levels of general and parental stress in parents who has children and teenagers with down´s syndrome. This is a transversal and analytic study that happened in five institutions that assist people with deficiency in Goiânia, Goiás. The sample consists of forty parents. Instruments of analyses of the stress: List of symptoms of stress to adults of LIPP (ISSL). The analyses of the general stress happened through of LIPP test: most of the parents wasn´t stressed but those who had stress were in the phase of resistance. In respect of the manifestation of the parental stress: the average level of stress of the parents was low in the three subscales and in the entire questionaire, however, 35% of the parents showed worried levels of stress. Parents of teenagers showed average level higher than the parents of children in the subscale dysfunctional interaction genitor-child. There was bigger proportion of parents of teenagers they have worried levels of stress. Comparison between the socioeconomic data and the parental stress revealed that the stress is bigger in parents who have studied a little bit. The results show that it´s necessary to help the emotional health of parents and children with down´s syndrome with the focus to the parents of teenagers.

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Stress, Locus of Control, and Family Cohesion and Adaptability in Parents of Children with Down, Williams, Fragile X, and Prader-Willi Syndromes

Cited by 63 publications

References 70 publications

Caregiver Strain and Sensory Features in Children With Autism Spectrum Disorder and Other Developmental Disabilities

Caregiver Strain and Sensory Features in Children With Autism Spectrum Disorder and Other Developmental Disabilities

Implications of theFMR1Premutation for Children, Adolescents, Adults, and Their Families

<b>Stress in Parents of Children and Adolescents with Down Syndrome</b>

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