Family Experiences Deciding For and Against Pediatric Home Ventilation
decision-making; children with medical complexity; parent perspective; home ventilation
Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. Result(s): In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. Conclusion(s): The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced. Copyright © 2020 Elsevier Inc.
Boss RD; Henderson CM; Raisanen JC; Jabre NA; Shipman K; Wilfond BS
Journal of Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2020.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.10.014</a>
Experiencing Place Identity and Place Belongingness at a Children's Hospice: Parents' Perspectives
Child; Children’s hospice; Focus Groups; Hospice Care; Hospices; Palliative Care; parent perspective; Parents; place belongingness; place identity
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Dunbar H; Carter B
Journal of Child Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>
Experiencing place identity and place belongingness at a children's hospice: Parents' perspectives
Children's hospice; parent perspective; place belongingness; place identity
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Dunbar H; Carter B
Journal of Child Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>