Psychological trajectories of mothers and fathers following their child's diagnosis of a life‐threatening illness or injury: A longitudinal investigation

Darling, Simone; Hearps, Stephen; Muscara, Frank; McCarthy, Maria; Nicholson, Jan M.; Burke, Kylie; Dimovski, Anica; Anderson, Vicki

doi:10.1002/jclp.22829

Cited by 9 publications

(10 citation statements)

References 69 publications

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“…Our finding that the proportion of caregivers with psychologic distress increased at 12 months after decreasing steadily over the prior three time points is consistent with literature demonstrating that many caregivers experience delayed responses following their child’s critical illness ( 6 , 10 , 39 ). There was a small but important number of caregivers who experienced greater distress following their child’s hospitalization than at the time of admission, and this group increased to 8.6% of caregivers by 1 year after admission.…”

Section: Discussionsupporting

confidence: 91%

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Association of Illness Severity With Family Outcomes Following Pediatric Septic Shock

Killien

Zimmerman

Gennaro

et al. 2022

Critical Care Explorations

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This is an open-access article distributed under the terms of the Creative Commons Attribution-Non Commercial-No Derivatives License 4.0 (CCBY-NC-ND), where it is permissible to download and share the work provided it is properly cited. The work cannot be changed in any way or used commercially without permission from the journal. IMPORTANCE:It is unknown which families are at risk for poor outcomes following a child's critical illness. OBJECTIVES:To evaluate if pediatric septic shock severity is associated with caregiver distress and family dysfunction throughout the year postadmission and if caregiver outcomes are associated with child health-related quality of life (HRQL). DESIGN, SETTING, AND PARTICIPANTS: Secondary analysis of the Life AfterPediatric Sepsis Evaluation prospective cohort study among children less than 18 years old with community-acquired septic shock requiring vasoactive-inotropic support and invasive or noninvasive ventilation in 12 academic U.S. PICUs. MAIN OUTCOMES AND MEASURES:Caregivers reported personal psychologic distress (Brief Symptom Inventory), family functioning (Family Assessment Device), and child HRQL (Pediatric Quality of Life Inventory, Functional Status II-Revised) at baseline and 1, 3, 6, and 12 months following PICU admission.RESULTS: Among 276 caregivers, psychologic distress prevalence initially decreased then rose to 15.3%, whereas prevalence of family dysfunction increased steadily to 30.9% at 12 months. On multivariable logistic regression adjusting for patient age, medical complexity, and immunosuppression, higher Pediatric Risk of Mortality and vasoactive-inotropic scores and longer PICU and hospital stay were associated with greater caregiver distress at 1 month. Higher Pediatric Logistic Organ Dysfunction (PELOD) score, longer ventilation, and longer PICU stay were associated with lower odds of family dysfunction at 1, 3, and 6 months (average PELOD vs new 6-mo dysfunction: odds ratio [OR], 0.73 [95% CI, 0.55-0.96]). Caregiver distress was associated with child HRQL decline from baseline to 1 month (OR,), 3 months (OR,), and 12 months (OR,). CONCLUSIONS AND RELEVANCE:Family dysfunction becomes increasingly prevalent over the year following pediatric septic shock and is less likely following higher severity illness. Caregiver psychologic distress is associated with worse child HRQL. Both patients and families may benefit from ongoing psychosocial support following survival from pediatric septic shock.

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Section: Discussionsupporting

confidence: 91%

“…following their child's critical illness (6,10,39). There was a small but important number of caregivers who experienced greater distress following their child's hospitalization than at the time of admission, and this group increased to 8.6% of caregivers by 1 year after admission.…”

Section: Observational Studymentioning

confidence: 99%

Association of Illness Severity With Family Outcomes Following Pediatric Septic Shock

Killien

Zimmerman

Gennaro

et al. 2022

Critical Care Explorations

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“…While fathers may initially adapt faster to their child's life-threatening illness/injury, they may experience worse mental health in the long-term when compared to mothers. 33 Future research recruiting both parents would allow better understanding of the impact of childhood cancer on the family and parent's long-term HRQoL. Furthermore, lower educational attainment is a risk factor for poorer HRQoL, 34 and the results obtained here may not reflect the experiences of parents with lower educational attainment during their child's survivorship years.…”

Section: Limitationsmentioning

confidence: 81%

Long‐term health‐related quality of life in young childhood cancer survivors and their parents

Fardell

Wakefield

Lourenço

et al. 2021

Pediatric Blood & Cancer

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Purpose: Few studies have investigated the health-related quality of life (HRQoL) of young childhood cancer survivors and their parents. This study describes parent and child cancer survivor HRQoL compared to population norms and identifies factors influencing child and parent HRQoL. Methods:We recruited parents of survivors who were currently <16 years, and >5 years postdiagnosis. Parents reported on their child's HRQoL (Kidscreen-10), and their own HRQoL (EQ-5D-5L). Parents rated their resilience and fear of cancer recurrence and listed their child's cancer-related late effects.Results: One hundred eighty-two parents of survivors (mean age = 12.4 years old and 9.7 years postdiagnosis) participated. Parent-reported child HRQoL was significantly lower than population norms (48.4 vs. 50.7, p < .009). Parents most commonly reported that their child experienced sadness and loneliness (18.1%). Experiencing more late effects and receiving treatments other than surgery were associated with worse child Abbreviation: HRQoL, health-related quality of life

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“…Additionally, Judge et al reported that maternal PTSS levels were correlated with child behaviour up to 12 months post PICU admission (76). Longitudinal data from fathers remains scarce, however reports have shown paternal rates of post-traumatic stress disorder (PTSD) to be lower than maternal PTSD at 12 months (77,78), which is argued to be the result of the predominantly maternal role of caregiving and subsequent differing perceptions of how life threatening the child's illness is (78,79). Whether it is acute or long-term, there is a clear link between child and parent psychosocial outcome, which needs awareness and recognition from PICU admission to beyond discharge (4).…”

Section: Parent/family Factorsmentioning

confidence: 99%

Transitions from short to long-term outcomes in pediatric critical care: considerations for clinical practice

Long¹,

Fink²

2021

Transl Pediatr

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Most children are surviving critical illness in highly resourced pediatric intensive care units (PICUs). However, in research studies, many of these children survive with multi-domain health sequelae that has the potential to affect development over many years, termed post-intensive care syndrome-pediatrics (PICS-p). Clinically, there are no recommendations for the assessment and follow-up of children with critical illness as exists for the premature neonatal and congenital heart disease populations. In research studies, primary and secondary outcomes are largely assessed at or prior to hospital discharge, disregarding post-hospital outcomes important to PICU stakeholders. Incorporating longer term outcomes into clinical and research programs, however, can no longer be overlooked. Barriers to outcomes assessments are varied and generalized vs. individualized, but some PICU centers are discovering how to overcome them and are providing this service to families-sometimes specific populations-in need. Research programs and funders are increasingly recognizing the value and need to assess long-term outcomes post-PICU. Finally, we should seek the strong backing of the PICU community and families to insist that long-term outcomes become our new clinical standard of care. PICUs should consider development of a multicenter, multinational collaborative to assess clinical outcomes and optimize care delivery and patient and family outcomes. The aim of this review is to present the potential considerations of implementing long-term clinical follow-up following pediatric critical illness.

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Psychological trajectories of mothers and fathers following their child's diagnosis of a life‐threatening illness or injury: A longitudinal investigation

Cited by 9 publications

References 69 publications

Association of Illness Severity With Family Outcomes Following Pediatric Septic Shock

Association of Illness Severity With Family Outcomes Following Pediatric Septic Shock

Long‐term health‐related quality of life in young childhood cancer survivors and their parents

Transitions from short to long-term outcomes in pediatric critical care: considerations for clinical practice

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