Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Pilapil, Mariecel; Coletti, Daniel J.; Rabey, Cindy; DeLaet, David E.

doi:10.1016/j.cppeds.2017.07.003

Cited by 65 publications

(71 citation statements)

References 60 publications

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“…One consequence of the child's illness is personal suffering for the parent. This personal suffering is termed "burden" (Pilapil, Coletti, Rabey, & Delaet, 2017). Parental burden includes What does this paper contribute to the wider global clinical community?…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…Parental burden is not only affected by the demands of the child's illness, in addition the parents' own characteristics also affect their perceived burden. Parents' resources to cope with stress, social support, education level and resilience may also play an important role (Pilapil et al, 2017;Ruiz-Robledillo, De Andrés-García, Pérez-Blasco, González-Bono, & Moya-Albiol, 2014).…”

Section: Backg Rou N Dmentioning

confidence: 99%

“…One consequence of the child's illness is personal suffering for the parent. This personal suffering is termed “burden” (Pilapil, Coletti, Rabey, & Delaet, ). Parental burden includes objective practical problems, for example time to treat the child, hospital visits, extra supervision and care, less time for work and leisure and financial impact.…”

Section: Introductionmentioning

confidence: 99%

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Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Westesson

Sparud-Lundin

Baghaei

et al. 2019

Journal of Clinical Nursing

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Aims and objectives To describe the perceived burden on parents of children with severe or moderate haemophilia and the impact of sociodemographic aspects and the child's medical condition on this. Background Parents of children with haemophilia face a multitude of demands. The child needs frequent intravenous injections, hospital visits, extra supervision and care. The child's illness and related management might have psychosocial effects on the parents. Design A multicentre, cross‐sectional study. Methods Caregiver burden was evaluated in 102 parents of children with haemophilia, using the HEMOCAB questionnaire which consists of 54 items divided into 13 domains which are to be answered on a 5‐point Likert scale. To assess the impact of sociodemographic aspects and clinical data on parental burden, linear regression analyses were undertaken. The study followed the STROBE checklist throughout the research process. Results Greater burden was seen in parents of children with past or present inhibitors, in parents of younger children, if a family member administered the clotting factor and in parents of children with overweight/obesity. No significant differences in burden were observed for type of haemophilia, if the child had bleeding in the past 12 months, if the child self‐infused, had another family member with haemophilia or if the parent had more children. Conclusions Parental perceived burden can be negatively affected by the child's medical condition; our results underline that healthcare professionals need to be aware of increased parental burden if the child is young, has or had inhibitors and has overweight/obesity. Relevance to clinical practice More psychosocial support from the healthcare professionals needs to be directed towards parents of younger children and particularly the parents of young children with inhibitors, thus decreasing the parental burden. Parental burden may be reduced if healthcare professionals more actively treat overweight and refer children to appropriate specialists.

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Section: Backg Rou N Dmentioning

confidence: 99%

Section: Backg Rou N Dmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Westesson

Sparud-Lundin

Baghaei

et al. 2019

Journal of Clinical Nursing

View full text Add to dashboard Cite

show abstract

“…This need for reorganization occurs primarily as a result of the time demand that child care activities need, as seen in a North American study that shows, for example, that caregivers spend about two hours a week planning their care and about 11 to 12 hours a day in direct home care. 30 Such dedication to care is, for many mothers, a lonely task. Since, even when the family arrangement allows the division of responsibilities, the woman usually occupies the space of leading figure in the supply of family and home demands, besides the responsibility of execution of the continuous care and therapeutic management to attend the specificities brought by the child's condition, and this accumulation of tasks may be a promoter and/or aggravating physical and emotional instability.…”

Section: Mothers Of Children With Zika Virus Syndromementioning

confidence: 99%

“…31,32 The role of primary caregiver plus domestic and other family demands has been studied and this profile, similar to that found in the collaborators of this study, potentiates economic difficulties, marital disorders and predisposes to social isolation and onset of depressive symptoms and overload, being common in this population a compromised quality of life, appearance of somatic symptoms and/or anxiety and depressive psychiatric disorders. 30,33,34…”

Section: Mothers Of Children With Zika Virus Syndromementioning

confidence: 99%

Repercussões psíquicas em mães de crianças com Síndrome Congênita do Zika Vírus

et al. 2020

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RESUMO Objetivo investigar as repercussões psíquicas em mães de crianças com complicações decorrentes da Síndrome Congênita pelo Zika Vírus. Método Estudo transversal com abordagem mista sequencial em duas etapas, realizado em uma Regional de Saúde de um estado do Nordeste. Participaram da primeira etapa da investigação, referente à aplicação do Self-Reporting Questionnaire, 15 mães. Na segunda etapa, foram realizadas entrevistas com 13 mães. A análise se deu por meio de um software estatístico (etapa 1) e pela técnica de análise de conteúdo (etapa 2). Resultados Observou-se que 10 mulheres apresentaram resultado positivo para o sofrimento mental. Na etapa qualitativa, destacaram-se nos relatos: o medo da perda/morte ou não evolução do quadro da criança, a exaustão física e psicológica em decorrência dos cuidados contínuos e o aparecimento/agravamento de conflitos que repercutem negativamente na dinâmica familiar. Conclusão e implicações para prática Os resultados apontam a necessidade de ações de educação em saúde, de modo a viabilizar troca de saberes, práticas e experiências; oferta de apoio psicossocial básico e fortalecimento de redes de apoio no sistema formal e informal de saúde, visando criar/ampliar equipamentos para auxiliar no autocuidado e empoderamento das identidades e potencialidades destas mulheres.

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Classic ataxia-telangiectasia: the phenotype of long-term survivors

Deuren

Weemaes

et al. 2019

J Neurol

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Objective Patients with classic ataxia-telangiectasia (A-T) generally die in the second or third decade of life. Clinical descriptions of AT tend to focus on the symptoms at presentation. However, during the course of the disease, other symptoms and complications emerge. As long-term survivors with classic AT develop a complex multisystem disorder with a largely unknown extent and severity, we aimed to comprehensively assess their full clinical picture. Methods Data from Dutch patients with classic AT above the age of 30 years were retrospectively collected. In addition, we searched the literature for descriptions of classic AT patients who survived beyond the age of 30 years. Results In the Dutch cohort, seven classic AT patients survived beyond 30 years of age. Fourteen additional patients were retrieved by the literature search. Common problems in older patients with classic AT were linked to ageing. Most patients had pulmonary, endocrine, cardiovascular, and gastro-intestinal problems. All patients had a tetraparesis with contractures. This led to immobilization and frequent hospital admissions. Most patients expressed the wish to no longer undergo intensive medical treatments, and waived follow-up programs. Conclusions Paucity of descriptions in the literature, and withdrawal from medical care complicate the acquisition of followup data on the natural history of long-term survivors. Irrespective of these limitations, we have obtained impression of the many problems that these patients face when surviving beyond 30 years of age. Awareness of these problems is needed to guide follow-up, counselling, and (palliative) care; decisions about life-prolonging treatments should be well considered.

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Caring for the Caregiver: Supporting Families of Youth With Special Health Care Needs

Cited by 65 publications

References 60 publications

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Burden on parents of children with haemophilia: The impact of sociodemographic and child's medical condition

Repercussões psíquicas em mães de crianças com Síndrome Congênita do Zika Vírus

Classic ataxia-telangiectasia: the phenotype of long-term survivors

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