Factors Associated with Parenting Stress in Mothers of Children with Fragile X Syndrome

Johnston, Cindy; Hessl, David; Blasey, Christine; Eliez, Stéphan; Erba, Heather W.; Dyer-Friedman, Jennifer; Glaser, Bronwyn; Reiss, Allan L.

doi:10.1097/00004703-200308000-00008

Cited by 126 publications

(122 citation statements)

References 27 publications

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“…Tais limitações também implicam tratamentos especializados à criança, o que mobiliza tempo e disponibilidade por parte do cuidador. Esses achados são semelhantes às conclusões da pesquisa de Johnston (2003), ao identificarem que as características de comportamento da criança com SXF foram determinantes no estresse físico e psicológico das mães, sendo mais associado às dificuldades de manejo comportamental do filho do que aos déficits cognitivos nele encontrados.…”

Section: Discussionunclassified

“…Entretanto, no estudo de Bristol et al (1988) e no de Johnston et al (2003), a adaptação materna e o grau de impacto do diagnóstico dependeram especialmente do apoio do pai e das crenças sobre o mesmo, e não da severidade da SXF. Mais especificamente, o nível de estresse dependeu mais das dificuldades de manejo do que das limitações cognitivas do filho.…”

Section: Discussionunclassified

“…Contudo, são poucas as pesquisas que associam o estresse parental às características de um familiar com a SXF (Johnston et al, 2003;Von Gontard et al, 2002).…”

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“…Para esses autores, as características de comportamento de uma criança com essa síndrome afetam o status psicológico dos pais, interferindo na qualidade da interação com sua criança. Johnston et al (2003) investigaram os principais fatores associados ao estresse em mães de crianças afetadas pela SXF. Os resultados de tal investigação confirmaram que os problemas de comportamento presentes na criança com a SXF são determinantes para o desenvolvimento do estresse na mãe, destacando o comprometimento na fala, o déficit de atenção, as complicações somáticas, a agressividade e o comprometimento social como as características comportamentais mais desencadeadoras de estresse.…”

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“…Contrário a muitos estudos que correlacionam o estresse dos pais à deficiência mental do filho(a) (Dyson, 1997;Perry et al, 1992), Johnston et al (2003) não encontraram associação significativa entre essas duas variáveis, sugerindo que o estresse parental está mais diretamente relacionado à dificuldade de manejar o comportamento de uma criança com a SXF do que aos déficits cognitivos nela presentes. Os autores ressaltam que o diagnóstico definitivo e o esclarecimento das características da síndrome contribuem para aliviar o estresse nos pais, já que estes podem desenvolver expectativas mais realistas sobre o futuro.…”

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Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil

Cherubini

Bosa

Bandeira

2008

Psicol. Reflex. Crit.

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ResumoA síndrome do x-frágil é a principal causa de deficiência mental herdada, suplantada apenas pela síndrome de Down, sendo a mulher a principal transmissora. Indivíduos com a síndrome do X-frágil apresentam um conjunto de características que pode causar um impacto no sistema familiar. Este estudo investiga o estresse e o autoconceito em 15 pais e mães de meninos com a síndrome do X-frágil, 15 de meninos com Síndrome de Down e 15 de meninos com desenvolvimento típico, baseado no modelo biopsicossocial de Bradford. Os resultados revelaram uma diferença significativa no autoconceito (self pessoal) entre as mães de crianças com a Síndrome do X-frágil e as mães de crianças com desenvolvimento típico, mas não entre aquelas e o grupo S. de Down, sugerindo que o fator da transmissão por si só não explica as diferenças no autoconceito. Não houve diferença entre os grupos na medida de estresse. Palavras-chave: Síndrome do X-Frágil; Síndrome de Down; estresse parental; autoconceito; apoio social. AbstractThe Fragile X Syndrome is the major inherited intellectual disability, superseded only by Down Syndrome, and it is transmitted mostly by females. Patients with Fragile X Syndrome show a set of physical, clinical, behavioral and cognitive features that may impact the family structures, especially the parental figures. This study investigates the stress and self-concept of 15 parents of boys with Fragile X Syndrome, 15 parents of boys with Down syndrome and 15 with typical development accordingly to the biopsychosocial model of Bradford. The results showed a significant difference of self-concept between mothers of children with Fragile X Syndrome and typical developmental groups, but not in those with Down Syndrome, suggesting that the transmission factor solely does not explain differences in self-concept.

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Section: Discussionunclassified

“…Contudo, são poucas as pesquisas que associam o estresse parental às características de um familiar com a SXF (Johnston et al, 2003;Von Gontard et al, 2002).…”

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Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil

Cherubini

Bosa

Bandeira

2008

Psicol. Reflex. Crit.

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Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis

Bailey

Sideris

Roberts

et al. 2008

American J of Med Genetics Pt A

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One hundred eight carrier mothers (95 premutation, 13 full mutation) of children with the full mutation fragile X syndrome completed seven scales to assess maternal stress, depressive symptoms, anger, anxiety, quality of life, hope, and optimism. A wide range of responses was found on each measure, with most mothers scoring in the non-clinical range on any individual measure. However, nearly half of the mothers scored in the clinically significant range on at least one measure and 25% on two or more measures. High stress and low quality of life were the most common domains of concern. Mothers with the full mutation generally did not differ from mothers with the premutation. CGG repeat length was not associated with responses on any of the measures completed by mothers with the premutation. Severity of the child's delay was not associated with any of the outcome measures, but child behavior problems accounted for significant variance in stress, depressive symptoms, anxiety, anger, and quality of life. Maternal adaptation appears to be a multidimensional phenomenon experienced in unique ways by each mother. Most mothers experienced positive adaptation, but a subset appear to be more vulnerable, especially those with children who have significant behavior problems. Future research needs to identify family, child, and support factors associated with maternal vulnerability and how adaptation changes over time in response to these factors.

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Stress and coping in parents of children with Prader‐Willi syndrome: Assessment of the impact of a structured plan of care

Tvrdik

Mason

Dent

et al. 2015

American J of Med Genetics Pt A

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Hyperphagia, developmental delays, and maladaptive behaviors are common in Prader-Willi syndrome (PWS) likely resulting in heightened parental stress. Objectives were to evaluate stress, describe usefulness of coping behaviors, and assess the impact of a structured Plan of Care (PC) on parents with children with PWS. Parents answered Perceived Stress Scale (PSS-14), Coping Health Inventory for Parents (CHIP), and narrative/demographic surveys. The PC was introduced to a cohort of parents after completion of the PSS-14 and CHIP and re-administered 4-6 month after the introduction of the PC. Higher parental stress (n = 57) was observed compared to the general population, and associated with parent's age, number of children living at home, and child's age and residential setting. "Maintaining family integration, cooperation, and an optimistic definition of the situation" was the most useful coping pattern. Thirty-eight parents answered the PSS-14 and CHIP after the PC. Parental stress decreased after the PC (P = 0.035). Coping behaviors related to "maintaining family integration" increased after the PC (P = 0.042). Women and men preferred different coping patterns before and after the PC. In conclusion, parental stress is increased in PWS, and a PC decreased stress and increased coping behaviors related to family stability for parents with children with PWS.

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Factors Associated with Parenting Stress in Mothers of Children with Fragile X Syndrome

Cited by 126 publications

References 27 publications

Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil

Estresse e autoconceito em pais e mães de crianças com a síndrome do X-frágil

Child and genetic variables associated with maternal adaptation to fragile X syndrome: A multidimensional analysis

Stress and coping in parents of children with Prader‐Willi syndrome: Assessment of the impact of a structured plan of care

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