The impact of newly diagnosed chronic paediatric conditions on parental quality of life

Goldbeck, Lutz

doi:10.1007/s11136-006-0068-y

Cited by 102 publications

(101 citation statements)

References 37 publications

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“…Poorer well-being, general health, quality of life and higher levels of depression and post-traumatic stress disorder have all been found in mothers compared to fathers (30,31,32). Thus our findings add to the growing literature supporting a gender difference in the parental impact of child chronic illness.…”

Section: King 16supporting

confidence: 63%

Impact of peanut allergy on quality of life, stress and anxiety in the family

King¹,

Knibb²,

Hourihane³

2009

Allergy

293

297

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Section: King 16supporting

confidence: 63%

Impact of peanut allergy on quality of life, stress and anxiety in the family

King¹,

Knibb²,

Hourihane³

2009

Allergy

293

297

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“…A chronic disease in childhood generates the need of greater parental participation in the care provided to the child and adaptation to new situations along time (19) . Even…”

Section: Discussionmentioning

confidence: 99%

Qualidade de vida em portadores de doença falciforme

Menezes¹,

Len

Hilário

et al. 2013

Rev. paul. pediatr.

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Objective:To evaluate the quality of life in children and adolescents with sickle cell disease attending a blood reference center, and to assess the quality of life of their relatives.Methods: Cross-sectional study that included 100 patients with sickle cell disease, which were divided into three subgroups according to age: 5 to 7 (n=18), 8 to 12 (n=32), and 13 to 18 years-old (n=50), and their parents. The Control Group included 50 healthy children and adolescents from a public local school, also divided into the same three age subgroups and their caregivers. The Pediatric Quality of life Inventory (PedsQL), version 4.0, was applied in both groups. The generic questionnaire Medical Outcomes Study 36 -Item Short-Form Health Survey (SF-36) was applied to the relatives. The answers were linearly transformed into a score and compared by nonparametric tests.Results: The PedsQL scores of patients were significantly lower than those obtained in the Control Group (p<0.0001) in all studied areas (physical, emotional, social skills, and school activities). Similarly, SF-36 scores applied to the patients' parents were lower than those obtained in the Control Group in all studied aspects (p<0.0001).Conclusions: Sickle cell disease affects the quality of life of children, adolescents, and their families. Patients sense restrictions in the emotional, social, family and physical aspects, among others.Key-words: quality of life; anemia, sickle cell; children; adolescents. RESUMOObjetivo: Avaliar a qualidade de vida relacionada à saúde de crianças e adolescentes com doença falciforme assistidas em um hemocentro de referência e mensurar a qualidade de vida relacionada à saúde dos respectivos familiares.Métodos: Estudo transversal e seccional com 100 pacientes portadores de doença falciforme, divididos em três subgrupos conforme a faixa etária: de 5 a 7 (n=18), de 8 a 12 (n=32) e de 13 a 18 anos (n=50) e com seus respectivos pais. O Grupo Controle foi composto por 50 crianças e adolescentes saudáveis de uma escola pública local, também divididos nos três subgrupos de idade e seus respectivos cuidadores. Resultados: Os escores dos pacientes no PedsQL foram inferiores àqueles do Grupo Controle (p<0,0001) nos aspectos estudados (capacidades física, emocional, social e atividade escolar). Da mesma forma, os escores do SF-36 aplicados aos pais dos pacientes foram mais baixos que os de pais do Grupo Controle em todos os aspectos estudados (p<0,0001).Conclusões: A doença falciforme compromete a qualidade de vida das crianças, dos adolescentes e de suas respectivas famílias. Os pacientes percebem restrições nos aspectos emocional, social, familiar e físico, dentre outros.Palavras-chave: qualidade de vida; anemia falciforme; crianças; adolescentes. RESUMENObjetivo: Evaluar la calidad de vida relacionada a la salud en niños y adolescentes con enfermedad falciforme asistidas en un servicio de hemoterapia de referencia y medir la calidad de vida relacionada a la salud de los respectivos familiares.Métodos: Estudio transversal y sec...

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“…Our study was also limited by the nonprobabilistic sampling method and the consequent heterogeneous distribution of sample characteristics. The pediatric literature has advocated that the role of primary caregivers of children with chronic health conditions is commonly assumed by mothers, and that mothers are likely to be more vulnerable to psychological symptoms and lower QoL than fathers (Goldbeck, 2006;Silver, Westbrook, & Stein, 1998). Consistently with these studies, our sample was mainly composed of mothers; however, the low frequency of fathers precluded the examination of the role of caregivers' gender on the mediating processes explaining parents' QoL.…”

Section: Discussionmentioning

confidence: 61%

Parental Positive Meaning-Making When Caregiving for Children With Asthma

Silva

Carona

Crespo

et al. 2014

Psicologia, Saúde & Doenças

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-Providing informal care to children/adolescents with chronic conditions has been associated with high levels of caregiving burden and impaired quality of life (QoL); however, parents can also experience uplifts which, by facilitating the attribution of positive meanings to caregiving, may contribute to better adaptation outcomes. The present study aimed at examining the direct and indirect links, via positive reframing as a coping strategy, between caregiving uplifts and quality of life (QoL) of parents who have a child/adolescent with asthma, as well as the invariance of the mediation model across children's age groups and asthma severity levels. A total of 180 parents of children/adolescents aged 8-18 reported their experience of caregiving uplifts (Revised Burden Measure), the use of positive reframing coping (Brief Cope) and their QoL (WHOQOL-Bref). Structural equation modeling showed a good fit for the mediation model (χ 2 /df=1.74, CFI=.95, RMSEA=.06), which explained 14% of the variability of parents' QoL. The caregiving uplifts were positively associated with positive reframing coping (β=.19, p=.02), which in turn was positively associated with QoL (β=.36, p<.01). No direct effect of uplifts on parents' QoL was found, but the indirect effect via positive reframing coping was statistically significant (β=.07, BC95%CI=.01/.14). Multi-group analyses demonstrated the strong structural invariance of the model across age groups (Δχ 2 =.89, p=.35) and asthma severity levels (Δχ 2 =1.91, p=.17). These results suggest that psychological interventions focused on recognizing and valuing caregiving uplifts and on positive reappraisal of the stressful situation may support more adaptive coping processes and improve parents' QoL. Keywords-Caregiving uplifts, Coping, Parents/ family caregivers, Pediatric asthma, Positive reframing, Quality of life ______________________________________________________________________ SIGNIFICAÇÕES PARENTAIS POSITIVAS NA PRESTAÇÃO DE CUIDADOS A CRIANÇAS/ ADOLESCENTES COM ASMARESUMO -A prestação de cuidados a crianças/adolescentes com condições crónicas tem sido associada a níveis elevados de desgaste e menor qualidade de vida (QdV); no entanto, os pais podem também experienciar gratificações que, facilitando uma atribuição de

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The impact of newly diagnosed chronic paediatric conditions on parental quality of life

Cited by 102 publications

References 37 publications

Impact of peanut allergy on quality of life, stress and anxiety in the family

Impact of peanut allergy on quality of life, stress and anxiety in the family

Qualidade de vida em portadores de doença falciforme

Parental Positive Meaning-Making When Caregiving for Children With Asthma

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