Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment

Bogetz, Jori F.; Yu, Justin; Oslin, Ellie; Barton, Krysta S.; Yi-Frazier, Joyce P.; Watson, Robert Scott; Rosenberg, Abby R.

doi:10.1016/j.jpainsymman.2023.08.025

Journal of Pain and Symptom Management

2023

DOI: 10.1016/j.jpainsymman.2023.08.025

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Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment

Jori F. Bogetz,

Justin Yu,

Ellie Oslin

et al.

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2024

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Cited by 2 publications

References 29 publications

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Association of Very Low Birth Weight Infants With Parental and Sibling Mental Health Care Usage

Schwartz,

Nye,

Colt

et al. 2024

Pediatrics

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BACKGROUND AND OBJECTIVES: Parents and siblings of very low birth weight, premature infants are at risk for poor mental health outcomes with increased mental health care usage. Knowledge regarding mental health care use patterns could guide interventions. METHODS: This retrospective cohort study included US families with commercial insurance coverage from a single carrier. Neonates born at ≤30 weeks’ gestational age or with a birth weight <1500 g were identified by insurance claim data between July 1, 2015, and June 30, 2016. Each case neonate family was matched with up to 4 control families. RESULTS: The study included 1209 case and 1884 control neonates (with 134 deaths among only the case neonates [11.1% of cases]); 2003 case and 3336 control parents (mean [SD] age, 34.6 [5.4] years; 2858 [53.5%] female); and 884 case and 1878 control siblings (mean [SD] age, 6.8 [5.5] years; 1375 [49.8%] female). Compared with controls, more case parents used mental health care over the first year after birth hospitalization discharge. Higher usage was observed for bereaved case parents soon after their child’s death. A smaller proportion of bereaved case siblings received mental health care compared with controls. Although nonbereaved case parents returned toward the proportion of use observed in controls, nonbereaved case female siblings, bereaved case female and male siblings, and bereaved male parents experienced continued differences. CONCLUSIONS: Understanding and meeting the mental health care needs of parents and siblings of very low birth weight premature neonates can be guided by these findings, including elevated and prolonged needs of bereaved parents and siblings.

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Association of Very Low Birth Weight Infants With Parental and Sibling Mental Health Care Usage

Schwartz,

Nye,

Colt

et al. 2024

Pediatrics

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Experiences in Coping with Stress—A Qualitative Study of Family Caregivers of Children with Medical Complexity

Layshock,

Porter,

Bogetz

et al. 2024

Children

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Objective: To better understand the strategies family caregivers of children with medical complexity (CMC) utilize to deal with the stress and challenges associated with caregiving. Methods: We conducted a cross-sectional qualitative study among family caregivers of CMC receiving medical care at a children’s hospital in Western Pennsylvania. Participants completed in-depth, semi-structured interviews focused on how CMC family caregivers approach and manage caregiving-related challenges and stress. Using constant comparative methodology, we inductively analyzed deidentified transcripts for emergent themes. Results: We interviewed 19 participants (89.4% female) with a mean age of 43 years (range 32–54 years). The mean age of the participants’ children was 10.8 years (range 1–20 years). Twelve participants’ children identified as white and four identified as Black. Three central themes regarding CMC caregivers’ stress-coping strategies emerged: (1) maintaining a positive mindset, (2) developing and relying on interpersonal support networks, and (3) making time for self-preservation. All three themes were universally reported (n = 19/19) by our participants. The most common subthemes for each theme, respectively, focused on staying hopeful and celebrating moments of joy; cultivating supportive relationships with family, friends, and fellow CMC family caregivers; and finding pleasure in “little things” (e.g., everyday activities and hobbies). Conclusion: Family caregivers of CMC utilize a multi-faceted approach to cope with the stress and challenges routinely encountered in caring for CMC. This study’s findings could be used to inform future clinical efforts and research directions aiming to improve clinicians’ ability to support CMC caregivers’ well-being.

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Navigating Stress in the Pediatric Intensive Care Unit Among Parents of Children with Severe Neurological Impairment

Cited by 2 publications

References 29 publications

Association of Very Low Birth Weight Infants With Parental and Sibling Mental Health Care Usage

Association of Very Low Birth Weight Infants With Parental and Sibling Mental Health Care Usage

Experiences in Coping with Stress—A Qualitative Study of Family Caregivers of Children with Medical Complexity

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