Caregiver burden and vocational participation among parents of adolescents with CF

Neri, Luca; Lucidi, Vincenzina; Catastini, P.; Colombo, Carla

doi:10.1002/ppul.23352

Cited by 31 publications

(26 citation statements)

References 37 publications

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“…This might hint at the bronchiectasis itself and not the underlying condition causing impaired quality of life in our cohort. No correlation with patient or proxy-reported quality of life could be found with the MRC scale as reported before in pediatric patients with cystic fibrosis [30]. This might be due to the fact that the mMRC dyspnea scale only measures one aspect of the quality of life but more detailed tools including the CFQ-R take a broader picture into account.…”

Section: Discussionmentioning

confidence: 61%

Non-CF Bronchiectasis as a Possible Indicator of a Primary Immunodeficiency: Diagnosis, Clinical Course, and Quality of Life in a Pediatric Cohort

et al. 2019

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Background Non cystic fibrosis bronchiectasis (NCBE) is an increasingly recognized chronic, progressive respiratory disorder with significant morbidity also in children and adolescents. Methods We longitudinally assessed a cohort of 35 pediatric patients with NCBE and investigated underlying diagnosis, symptoms, clinical course, treatment, and quality of life. Results NCBE were diagnosed at a mean age of 9.5 (±5.3) years. In half of the children NCBE were found prior to identification of the causative diagnosis. Primary immunodeficiency (PID) was identified as the underlying diagnosis in 24/35 (68%) cases, of which two-thirds showed antibody deficiency. In the 11 non-PID cases ciliopathies were most common (n=7). Clinical aspects such as manifestation age, cough or dyspnea symptoms, and exacerbation frequency did not differ significantly between PID and non-PID patients. Likewise, quality of life (QoL) was equally reduced in both groups. Lung function test parameters were stable under appropriate therapy in all children. The majority in both groups was insufficiently vaccinated against influenza and pneumococci. Conclusion Our data indicates that NCBE need to be especially appreciated as a presenting sign of PID in pediatric patients. Thus, occurrence of NCBE should warrant rigorous diagnostics to identify the underlying condition. In our cohort NCBE themselves rather than the causative diagnoses seem to dictate the clinical course of disease and reduce QoL in children. More intensive efforts have to be undertaken to vaccinate patients according to recommendations.

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Section: Discussionmentioning

confidence: 61%

Non-CF Bronchiectasis as a Possible Indicator of a Primary Immunodeficiency: Diagnosis, Clinical Course, and Quality of Life in a Pediatric Cohort

et al. 2019

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“…Adding the emotional and sociological impact of taking care of a child with a chronic disease, it can easily be said that these caregivers are under a considerable burden. However, the data is scarce, and there are only a few studies that previously investigated this aspect of CF, with only one investigating the caregiver burden in children with CF …”

Section: Introductionmentioning

confidence: 99%

“…this aspect of CF, with only one investigating the caregiver burden in children with CF. [2][3][4] The case of caregiver burden is more elusive in patients with primary ciliary dyskinesia (PCD). The current literature shows that PCD negatively affects the patients' quality of life (QOL) in various aspects.…”

mentioning

confidence: 99%

“…| 1939of the caregivers and its relation to caregiver burden. A study which included 225 caregivers showed that higher caregiving strain was associated with an increased likelihood of changing jobs, working a shift schedule, or giving up career opportunities to fulfill their caregiving role and increased productivity losses due to family leaves 2. QOL investigations and caregiver burden are new concepts in PCD.…”

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confidence: 99%

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Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia

Coşkun

Erdem

Karadağ-Saygı

et al. 2019

Pediatric Pulmonology

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Introduction Caregiver burden impacts both the social and economic framework of society. Cystic fibrosis (CF) causes significant caregiver burden, but the current data is scarce. In the case of primary ciliary dyskinesia (PCD), even less is known. This study aims to compare the caregiver burden of the parents of patients with CF and PCD. Methods Patients with CF and PCD between the ages of 6 to 13 and their parents were included. Patients’ clinical information and parents’ demographics were recorded. Caregiver burden was measured with Zarit Caregiver Burden Scale (ZCB), while the quality of life (QOL) was measured with CFQOL—revised (CFQOL‐R) and PCD QOL questionnaire as the patients’ age and diagnosis indicated. Results A total of 63 patients, 44 with CF (69%) and 85 caregivers (35 mothers, 6 fathers, and 22 mother‐father dyads) participated in the study. Caregiver burden was significantly higher in mothers of the CF group with a mean ZCB of 30.5 ± 10.7 when compared to the PCD group with a mean ZCB of 21.93 ± 8.26 (P = .006). This was similar in fathers with mean ZCB of 27.5 ± 9.21 in the CF group and 20.36 ± 7.43 in the PCD group (P = .03). In correlation analyses, mothers’ caregiver burden moderately and inversely correlated with CFQOL‐R subscales in the CF population. Conclusion Caregiver burden is significantly higher in the CF population when compared to PCD. It is correlated with pulmonary functions and QOL in patients with CF.

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“…For example, caretaking is associated with role strain and marital discord (Brown et al, 2008; O'Brien, Duffy & Nicholl, 2009), missed workdays, reduced hours and productivity or exiting the workforce completely (Neri, Lucidi, Catastini, & Colombo, 2015; Phillips et al, 2016), significant costs and financial problems (Adelman et al, 2014; Brown et al, 2008). Informal caregivers are at heightened risk for serious threats to their physical and psychological health (Brown et al, 2008; Murphy et al, 2007), including elevated level of stress and emotional distress, particularly if their relative's illness was unexpected or if the prognosis is uncertain (Brown et al, 2008; O'Brien et al, 2009).…”

Section: Introductionmentioning

confidence: 99%

Peer-Delivered Models for Caregivers of Children and Adults with Health Conditions: A Review

Acri

Zhang

Adler³

et al. 2016

J Child Fam Stud

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Peer-delivered health models may hold important benefits for family members, yet their prevalence, components, and outcomes are unknown. We conducted a review of peer-delivered services for families of children and adults with serious health problems. Studies of interventions published between 2000 and 2016 were included if the intervention contained a component for family members. Of 88 studies that were assessed for their eligibility, five met criteria. Familial components included information about the health condition and management, strategies to enhance communication and stress, and the provision of emotional support. Outcomes were largely favorable, including reductions in distress and symptoms of trauma, enhanced quality of life, and positive perceptions of the peer therapeutic alliance. Peer-delivered services for family members may hold important benefits to caregivers; however, the research base remains thin. A research agenda to develop and examine these models is discussed.

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Caregiver burden and vocational participation among parents of adolescents with CF

Abstract: Caregiving burden is a relevant and frequent issue among parents of adolescent patients with cystic fibrosis. We showed that the humanistic and vocational impact of caring for young patients with the disease is striking and demands health-care and welfare supportive actions.

Cited by 31 publications

References 37 publications

Non-CF Bronchiectasis as a Possible Indicator of a Primary Immunodeficiency: Diagnosis, Clinical Course, and Quality of Life in a Pediatric Cohort

Non-CF Bronchiectasis as a Possible Indicator of a Primary Immunodeficiency: Diagnosis, Clinical Course, and Quality of Life in a Pediatric Cohort

Caregiver burden in children with cystic fibrosis and primary ciliary dyskinesia

Peer-Delivered Models for Caregivers of Children and Adults with Health Conditions: A Review

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