CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES

CHILDREN WITH LIFE-LIMITING CONDITIONS USING NONINVASIVE VENTILATION: PARENT PERSPECTIVES

Olmstead D; Turnbull H; Kingsley B; Castro-Codesal M

Chest

2024

noninvasive ventilation; parent; adolescent; adult; anticipatory guidance; care behavior; child; clinical article; conference abstract; decision making; dyspnea; female; health care personnel; human; interview; male; personal experience; qualitative research; special situation for pharmacovigilance; therapy

SESSION TITLE: Pediatric Potpourri SESSION TYPE: Original Investigations PRESENTED ON: 10/06/2024 01:30 pm - 02:30 pm PURPOSE: Non-invasive ventilation (NIV) is increasingly used in children with life-limiting conditions (LLCs) to treat their breathing difficulties and potentially prolong life. To date, research on NIV is almost exclusively quantitative, failing to explore how this technology influences the life and death experiences of children with LLCs. An in-depth understanding of parents' experiences with NIV in this vulnerable group of children is necessary to inform optimal care. The purpose of this research was to explore the lived experiences of parents caring for a child with LLCs who used non-invasive ventilation both during and at the end of their life. <br/>METHOD(S): This was a qualitative study using an interpretive descriptive method in order to gain a greater clinical understanding of the experience of using NIV in children with LLCs. A purposive sampling approach was used and in-depth interviews with bereaved parents of children with LLCs who had used NIV were completed. Interviews were audio recorded and transcribed verbatim, then analyzed using interpretative description methodology. As a project that derived out of a clinically motivated question, interpretive description guided our ability to understand the role of non-invasive ventilation for children with life limiting and complex illnesses in order to make practical changes to clinical policy and practice. <br/>RESULT(S): Parents shared personal insights on their experiences with NIV therapies throughout the progression of their child's illness towards and during end of life. Themes arising from parent narratives encompassed: decision making through their child's life trajectory - by the medical team and by the parents and the child; the importance of the child's "voice" at all stages of their illness; the meaning of NIV and how that changed over time; and the end-of-life experience as it related to their child's use of NIV. Parent reflections highlighted the need for health care providers and families to have a shared understanding of the impact of and goals for NIV therapy throughout a child's life journey and towards end of life. Powerful descriptions of end-of-life experiences revealed how parents continue to live with their decisions many years following the death of their child. <br/>CONCLUSION(S): In this study, parent narratives provided inimitable and meaningful insights on the experience of NIV therapy for children with LLCs throughout the life trajectory. These rich and personal descriptions highlight the importance for NIV therapy decisions to align with child and family goals at all stages of a child's life and end of life. CLINICAL IMPLICATIONS: Eliciting and integrating child and family-centered goals in decisions on the initiation and use of NIV therapy in children with LLCs is essential to optimize care. Additionally, delivering goal concordant care may be an important part of minimizing decisional regret after the loss of a child. Health care providers should provide anticipatory guidance on the expected illness trajectory to parents caring for children with medical complexity using non-invasive ventilation. DISCLOSURES: No relevant relationships by Maria Castro-Codesal No relevant relationships by Bethan Kingsley No relevant relationships by Deborah Olmstead No relevant relationships by Hayley Turnbull<br/>Copyright &#xa9; 2024 American College of Chest Physicians

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November List 2024