Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

Koch, Amie; Kozhumam, Arthi Shankar; Seeler, Erika; Docherty, Sharron L.; Brandon, Debra

doi:10.1016/j.pedn.2021.03.017

Cited by 23 publications

(7 citation statements)

References 64 publications

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“…It can be costly and challenging for parents to physically get to these appointments due to their child's needs, transportation requirements, getting time off of work, and other family responsibilities. This finding is consistent with a prior study where parents of children with complex conditions described caregiver strain due to difficulties with missing work, delaying schooling, and passing on job offers and promotions ( Koch et al, 2021 ). Telehealth offers benefits such as minimizing lost work time, minimizing missed schooling for the child, reducing the stress of transportation and managing a CSHCN out of the home, and allows the provider to see the patient and family in their home environment.…”

Section: Discussionsupporting

confidence: 92%

Parenting a child with a chronic illness during a pandemic

Gallegos

Aldridge

Connor

et al. 2022

Journal of Pediatric Nursing

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Section: Discussionsupporting

confidence: 92%

Parenting a child with a chronic illness during a pandemic

Gallegos

Aldridge

Connor

et al. 2022

Journal of Pediatric Nursing

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“…Das kann so weit gehen, dass das Betreuungsausmaß sämtliche physischen, psychischen, emotionalen, finanziellen und sozialen Ressourcen übersteigt. Daher ist es gerade bei der Nachsorge wichtig für Pflegepersonen, ein Augenmerk auf elterliche Überforderung zu haben und frühzeitig, vielleicht sogar schon vor der Entlassung nach Hause professionelle Unterstützungssysteme für sie zu organisieren 22 .…”

Section: Der Fokus Liegt Auf Der Familieunclassified

Die Transition von Familien mit Frühgeborenen von der Station nach Hause

Chalupka-Ho

2024

JuKiP - Ihr Fachmagazin für Gesundheits- und Kinderkrankenpfleg

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Im Bereich der Geburtshilfe und Neonatologie begegnen Pflegepersonen Familien während der Transition von einem Leben ohne Kind(er) zu einem Leben mit Kind(ern). Der Familienzuwachs allein bringt Veränderungen mit sich, doch was passiert, wenn das gewünschte Familienleben durch Komplikationen nicht mehr so stattfinden kann wie ursprünglich vorgestellt und erwartet? Wie die Begleitung von Transitionsprozessen in der Pflegepraxis gestaltet werden könnte, soll anhand der Begleitung des elterlichen Transitionsprozesses im Fachbereich der Neonatologie gezeigt werden.

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“…Following hospitalization, the burden on the patient and family persists during the vulnerable recovery phase at home 4 . Parents have to provide both medical care and parental care, while attending to work, taking care of the family's financial situation, continuing societal participation, and maintaining familial relationships 5,6 . Over time, the (family‐)environment gradually stabilizes and focus shifts toward long‐term follow‐up of HSCT and re‐attending "normal life."…”

Section: Introductionmentioning

confidence: 99%

“…4 Parents have to provide both medical care and parental care, while attending to work, taking care of the family's financial situation, continuing societal participation, and maintaining familial relationships. 5,6 Over time, the (family-)environment gradually stabilizes and focus shifts toward long-term follow-up of HSCT and re-attending "normal life." However, due to (the risk of) persistence of disease manifestation, the occurrence of late effects, and life-long follow-up after HSCT, the burden on the patient and family may remain.…”

Section: Introductionmentioning

confidence: 99%

Long‐term parental distress after pediatric hematopoietic stem cell transplantation for nonmalignant diseases

Bense,

Stiggelbout,

Lankester

et al. 2023

Pediatric Blood & Cancer

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BackgroundSurvival rates have continued to increase for pediatric hematopoietic stem cell transplantation (HSCT) for nonmalignant diseases. Despite the crucial role of caregivers in this high‐intensity treatment, knowledge about long‐term parental impact is lacking.ProcedureThis cross‐sectional study assessed parental distress and everyday problems in parents of patients 2 years and older after pediatric HSCT for a nonmalignant disease using Distress Thermometer for Parents (DT‐P), and compared outcomes to matched Dutch parents of healthy children and Dutch parents of children with a chronic condition (CC).ResultsMedian follow‐up was 5.3 years (interquartile range [IQR]: 2.9–8.6). Underlying diseases were inborn errors of immunity (N = 30), hemoglobinopathies (N = 13), and bone marrow failure (N = 27). Mothers of pediatric HSCT recipients (N = 70) reported comparable overall distress levels to mothers of healthy children, but experienced more distress related to parenting problems, specifically managing their child's emotions, discussing disease consequences, and fostering independence. Fathers of HSCT recipients (N = 45) reported higher overall distress levels and had more emotional distress compared to fathers of healthy children.ConclusionsOverall, parental distress and everyday problems of parents of HSCT recipients are comparable to those of parents of children with CC. However, there is ongoing parental burden, both emotional and in parenting, long‐term after HSCT compared to parents of healthy children, and the type of burden differs between mothers and fathers. These results indicate that individualized parental supportive care should not remain restricted to the acute hospitalization phase, but also be actively offered during long‐term follow‐up after pediatric HSCT.

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Multiple Roles of Parental Caregivers of Children with Complex Life-Threatening Conditions: A Qualitative Descriptive Analysis

Cited by 23 publications

References 64 publications

Parenting a child with a chronic illness during a pandemic

Parenting a child with a chronic illness during a pandemic

Die Transition von Familien mit Frühgeborenen von der Station nach Hause

Long‐term parental distress after pediatric hematopoietic stem cell transplantation for nonmalignant diseases

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