Family Experiences Deciding For and Against Pediatric Home Ventilation

Boss, Renee D.; Henderson, Carrie M.; Raisanen, Jessica C.; Jabre, Nicholas A.; Shipman, Kelly J.; Wilfond, Benjamin S.

doi:10.1016/j.jpeds.2020.10.014

Cited by 21 publications

(40 citation statements)

References 35 publications

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“…Care should be taken to ensure that content supports parents leaning towards, or against, home ventilation equally. Web‐based decisional tools, 32 online resources, 33 and informational booklets 34 developed with the intention of providing balanced perspectives could help achieve this end. Of course, any standardized approach must be modifiable to the individual family context.…”

Section: Discussionmentioning

confidence: 99%

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Jabre

Raisanen

Shipman

et al. 2021

Pediatric Pulmonology

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Rationale Deciding about pediatric home ventilation is exceptionally challenging for parents. Understanding the decision‐making needs of parents who made different choices for their children could inform clinician counseling that better supports parents’ diverse values and goals. Objectives To determine how clinicians can meet the decisional needs of parents considering home ventilation using a balanced sample of families who chose for or against intervention. Methods We conducted semi‐structured interviews of parents who chose for or against home ventilation for their child within the previous 5 years. Parents were recruited from three academic centers across the United States. Interviews focused on parent–clinician communication during decision‐making and how clinicians made the process easier or more difficult. Qualitative analysis was used to generate themes and identify key results. Results Thirty‐eight parents were interviewed; 20 chose for and 18 chose against home ventilation. Five themes described their perspectives on how clinicians can facilitate high‐quality decision‐making: demonstrating dedication to families, effectively managing the medical team, introducing the concept of home ventilation with intention, facilitating meaningful conversation about the treatment options, and supporting and respecting the family's decision. Conclusions High‐quality decision‐making around home ventilation depends on individual clinician actions and the complex operations of large academic settings. Strong working relationships with parents, collaborative alliances with colleagues, and appropriate delivery of key content can help meet the needs of parents considering invasive breathing supports for their children.

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Section: Discussionmentioning

confidence: 99%

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Jabre

Raisanen

Shipman

et al. 2021

Pediatric Pulmonology

Self Cite

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“…Partnering with peer parent teaching programs may offer a granular perspective of life with home ventilation; there are existing models for professionally guided but parent‐led supports 23 . As part of the current study, our team created the website http://Family-Reflections.com which summarizes the experiences of the families we interviewed, and could also be incorporated into home ventilation decision counseling 15 . Further study is needed to determine the feasibility and acceptability of social discussions with parents and to prospectively refine predecision counseling.…”

Section: Discussionmentioning

confidence: 99%

“…As part of a larger study about pediatric home ventilation, we recruited English‐speaking parents in three geographically distinct areas (Maryland, Mississippi, and Washington) who had faced decisions about home ventilation 15 . All families were followed by home ventilation teams at tertiary hospitals dedicated to pediatric care; English‐speaking parents were purposively recruited if they had made a decision about home ventilation for their child within the last 5 years.…”

Section: Methodsmentioning

confidence: 99%

Life with pediatric home ventilation: Expectations versus experience

Henderson

Raisanen

Shipman

et al. 2021

Pediatric Pulmonology

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Objectives To explore the family experience of home ventilation through a comparison of anticipated home life changes with subsequent experiences. Study Design Guided interviews with parents across three states who chose home ventilation for their child within the last 5 years. Patient‐Subject Selection Purposive sampling of parents who chose home ventilation for their child within the last 5 years. Methods Interviews were transcribed for qualitative analysis and analyzed for thematic saturation and prevalence of codes. Results Twenty families were interviewed. Families generally reported not considering potential home life changes when facing the decision about home ventilation; instead, they worried most about medical management. These concerns reversed in importance later. Families learned medical management quickly but felt largely unprepared for the extensive changes to their home life, including isolation, altered relationships with extended family and community, effects on siblings, financial strain, and need for physical changes to their house. Families had not anticipated how much they would be affected by home healthcare as a new part of their life. Conclusions The priorities that families consider during decisions about pediatric home ventilation may not be aligned with the actual home experience of this technology. Given that the success of home ventilation largely rests with the family's care, family expectations for home life adaptations must be augmented, as should postdischarge supports for families with complex home care experiences.

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“…This study followed the Standards for Reporting Qualitative Research guidelines 9 to promote trustworthiness and was part of a large multicenter project that used semi-structured interviews and inductive thematic analysis to retrospectively explore parental decision-making around HMV. 10 Purposive sampling was used so that we could include a variety of perspectives in terms of decisions about HMV, parental bereavement status, community setting (urban, rural, suburban), and geographic region of the country. The three institutions were all academic medical centers providing care for pediatric patients throughout their state: one in the northeast, one in the south, and one in the northwestern USA.…”

Section: Et Hodmentioning

confidence: 99%

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

Bogetz

Munjapara

Henderson

et al. 2022

Develop Med Child Neuro

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Children with severe neurological impairment (SNI) have central nervous system disorders that arise in childhood and result in motor and cognitive impairment as well as complex developmental disability that requires much assistance with activities of daily living. 1 Some children with SNI receive home mechanical ventilation (HMV), defined as invasive ventilatory support with a tracheostomy and therefore clinician counseling must include relevant information about its known risks and benefits. 2,3 Counseling about HMV for children with SNI depends on many factors and is challenging for both parents and clinicians. 4,5 Children with SNI often have overlapping chronic

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Family Experiences Deciding For and Against Pediatric Home Ventilation

Cited by 21 publications

References 35 publications

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Parent perspectives on facilitating decision‐making around pediatric home ventilation

Life with pediatric home ventilation: Expectations versus experience

Home mechanical ventilation for children with severe neurological impairment: Parents' perspectives on clinician counselling

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