Psychological and Socioeconomic Burdens Faced by Family Caregivers of Children With Asthma: An Integrative Review

Foronda, Cynthia; Kelley, Courtney N.; Nadeau, Catherine; Prather, Susan; Lewis-Pierre, LaToya; Sarik, Danielle Altares; Muheriwa, Sadandaula Rose

doi:10.1016/j.pedhc.2020.02.003

Cited by 38 publications

(33 citation statements)

References 84 publications

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“…Therefore, it is believed that these conditions may alter the individual's perceptual capacity, including that of their own health and overall quality of life, since the fact that informal caregivers present psychological symptoms can negatively influence both their quality of life and their ability to offer welcoming and answering to the care demands required by the children, which may compromise their ability to cope with situations 10,29 .…”

Section: /13mentioning

confidence: 99%

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Bom

Prado

Farinha

et al. 2021

Texto contexto - enferm.

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Objective: to analyze the correlation between stress, overload and quality of life of informal caregivers of children with and without orofacial cleft and dysphagia. Method: a cross-sectional, case-control study carried out in a public and tertiary hospital, located in the inland of São Paulo, Brazil, which encompassed two groups: case and comparative. The case group consisted of 30 informal caregivers of children with orofacial cleft and dysphagia, using a feeding tube, while the comparative group consisted of 30 informal caregivers of children without orofacial cleft, fed orally. For data collection, the Bourden Interview Scale, Inventory of Stress Symptoms for Adults and the World Health Organization Quality of Life Bref were used. For statistical analysis, the following tests were used: chi-square, Student's t, Mann-Whitney and Pearson's correlation, all with a 5% significance level. Analysis of the linear correlation forces was also used. Results: in the case group, stress presented a moderate correlation with the overall quality of life (r=-0.41; p=0.025) and satisfaction with health (r=-0.42; p=0.021). Also in the case group, referring to quality of life, the Physical and Psychological domains presented a strong correlation with overload (r=-0.54, p=0.002; r=-0.55, p=0.002, respectively). In the comparative group, no correlations were identified. Conclusion: among the informal caregivers of children with orofacial cleft and dysphagia, there was a correlation between stress and the perception of global quality of life and satisfaction with health, as well as between overload and quality of life, in the physical and psychological dimensions.

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Section: /13mentioning

confidence: 99%

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Bom

Prado

Farinha

et al. 2021

Texto contexto - enferm.

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“…The value of social support from someone who is on the same journey is well documented. 68 Although the quality of the advice and information exchanged on social support platforms is often criticised, 69 there was no evidence of this in our sample, with some sites convened or facilitated by a trained health professional. Four studies critiqued the content of posts on social support platforms for people with different rare diseases and found them to be overwhelmingly positive and supportive.…”

Section: Discussionmentioning

confidence: 71%

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

et al. 2022

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ObjectivesRare diseases are characterised by low incidence, often with little evidence for effective treatments. Isolated patients and specialist centres for rare diseases are increasingly connected, thanks to the internet. This scoping review aimed to identify issues facing people with a rare disease that authors report may be addressed by electronic resources (mobile applications, websites, social media platforms, telehealth and online portals).DesignScoping review guided by the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines.Data sourcesMedline, Embase and PsycInfo were searched, supplemented by hand searches of selected journals, in July 2021.Eligibility criteriaPeer-reviewed literature in English was searched using terms for rare disease (incidence <1:2000), electronic modalities (eg, mobile phone) and patient support terms. No date limit was set. Conference abstracts were included.Data extraction and synthesisData extracted: rare disease/group of diseases, name of the e-resource, need identified in the patient cohort, features of the e-resource, any other findings or observations of interest. From this, a framework was developed synthesising features across diseases and resources.ResultsSeventy-two papers were found (from 383). Fifty-six electronic resources were described in 64 papers, while 12 papers were exploratory studies. Cystic fibrosis (n=28) was the most frequently addressed, followed by haemophilia (n=16).Four domains and 23 subdomains of needs were extracted from the papers. The domains of needs were: support for self-management, access to high-quality information, access to appropriate specialist services, and social support. Subdomains are sometimes related to needs of individual rare diseases (eg, social isolation due to infection risk in people with cystic fibrosis). Fifteen electronic resources were identified that supported parents of children with rare disorders.ConclusionsWhile it can be argued that rare diseases, per se, may be no less distressing or onerous to care for than a high prevalence disease, rare diseases have unique features: the lengthy odyssey to find a diagnosis, then appropriate specialists, the lack of evidence around effective treatments, guidelines or access to knowledgeable general health service providers. Designers of electronic resources are urged to consult key stakeholders to enhance the effectiveness and usability of resources for people with a rare disease.

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“…Families of children with more severe respiratory symptoms are likely to face greater healthcare costs and disruption of their daily life. 38,39 Also, the presence of respiratory health problems may entail special care needs that could adversely affect parental job stability and time for personal care and leisure activities, 40,41 which, in turn, may have a negative impact on their well-being and family dynamics. We found that even the presence of ‘mild’ symptoms alone related to decreased parents’ HRQoL and family functioning in school-age children, while this association was less strong for preschool-age children.…”

Section: Discussionmentioning

confidence: 99%

Respiratory morbidity in preschool and school-age children born very preterm and its association with parents’ health-related quality of life and family functioning

Peralta

Piatti

Haile

et al. 2022

Preprint

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ImportanceIt is not known whether respiratory morbidity associated with very premature birth and bronchopulmonary dysplasia (BPD) influence parents’ health and family functioning beyond infancy.ObjectiveTo describe the prevalence and severity of respiratory symptoms in children born very preterm and to assess their association with parents’ health-related quality of life (HRQoL) and family functioning.Design, setting and participantsIn this cross-sectional study, we recruited children born less than 32 weeks’ gestation between January 2006 and December 2019, in the greater Zurich area, Switzerland. Between May and December 2021, parents were invited to complete an online survey for their preterm child and for a control term born (≥37 weeks’ gestation) sibling aged 1 to 18 years. Children with severe chronic conditions or with a recent COVID-19 infection were excluded.ExposureRespiratory symptoms, categorised as ‘none’, ‘mild’ and ‘moderate-severe’.Main outcomes and measuresThe Total Score, the Parent HRQoL Score, and the Family Functioning Score of the Pediatrics Quality of Life Family Impact Module (PedsQL FIM) questionnaire. Associations between respiratory symptoms and these scores were assessed using multivariable linear regression, adjusted for potential confounders.ResultsOf 1,697 eligible very preterm children, the survey was completed for 616 of them (99 with BPD) and 180 controls. Girls made up 45% (46% in controls) of the sample and 63% (60% in controls) of participants were aged 6 to 18 years (school-age). Overall, very preterm children reported a higher risk of respiratory symptoms than controls, especially the preschool group and those with moderate-to-severe BPD. Parents of children with ‘mild’ and ‘moderate-severe’ respiratory symptoms had on average -3.9 [95%CI: -6.6 to -1.1] and -8.2 [-11.2 to -5.2] lower Total Score respectively than parents of children with no symptoms. The same pattern was observed for the other summary scores, and after stratifying by age categories.Conclusions and relevanceOur study suggests that respiratory morbidity in very preterm children has a negative impact on parents’ HRQoL and family functioning, even beyond the first years of life. This finding highlights the need for appropriate monitoring and support for families of survivors of very premature birth.KEY POINTSQuestionIs respiratory morbidity in survivors of very premature birth associated with parents’ health-related quality of life (HRQoL) and family functioning beyond the first years of life?FindingsIn this cross-sectional study including 616 children born very preterm and 185 term born controls, both aged 1 to 18 years, we found that very preterm children remain at increased risk of respiratory morbidity through childhood, and that this is associated with decreased parents’ HRQoL and family functioning.MeaningFamilies of survivors of very premature birth need appropriate monitoring and support to cope with the burden of respiratory morbidity.

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Psychological and Socioeconomic Burdens Faced by Family Caregivers of Children With Asthma: An Integrative Review

Cited by 38 publications

References 84 publications

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Stress, Overload and Quality of Life in Caregivers of Children With/Without Orofacial Cleft and Dysphagia

Needs of people with rare diseases that can be supported by electronic resources: a scoping review

Respiratory morbidity in preschool and school-age children born very preterm and its association with parents’ health-related quality of life and family functioning

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