Daily Living with Distress and Enrichment: the Moral Experience of Families with Ventilator-Assisted Children at Home

Daily Living with Distress and Enrichment: the Moral Experience of Families with Ventilator-Assisted Children at Home

Daily Living with Distress and Enrichment: the Moral Experience of Families with Ventilator-Assisted Children at Home

Daily Living with Distress and Enrichment: the Moral Experience of Families with Ventilator-Assisted Children at Homes

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Référence bibliographique [3263]

Pediatrics, vol. 117, no 1, p. e48-e60.

Fiche synthèse

1. Objectifs


Intentions :
« The objective of this study was to uncover the moral experience of families with a child who requires assisted ventilation at home. » (p. e50)

2. Méthode


Échantillon/Matériau :
« Twelve families (38 family members) were recruited through the Quebec Program for Home Ventilatory Assistance. » (p. e48)

Instruments :
- Guide d’entretien semi-directif;
- Grille d’observation.

Type de traitement des données :
Analyse de contenu

3. Résumé


« The growing shift toward home care services assumes that ’being home is good’ and that this is the most desirable option. Although ethical issues in medical decision-making have been examined in numerous contexts, home care decisions for technology-dependent children and the moral dilemmas that this population confronts remain virtually unknown. This study explored the moral dimension of family experience through detailed accounts of life with a child who requires assisted ventilation at home. This study involved an examination of moral phenomena inherent in (1) the individual experiences of the ventilator-assisted child, siblings, and parents and (2) everyday family life as a whole. [...]
Data analysis identified 6 principal themes. The themes raised by families whose children received ventilation invasively via a tracheostomy were not systematically different or more distressed than were families of children with face masks. The principal themes were (1) confronting parental responsibility: parental responsibility was described as stressful and sometimes overwhelming. Parents needed to devote extraordinary care and attention to their children’s needs. They struggled with the significant emotional strain, physical and psychological dependence of the child, impact on family relationships, living with the daily threat of death, and feeling that there was ’no free choice’ in the matter: they could not have chosen to let their child die. (2) Seeking normality: all of the families devoted significant efforts toward normalizing their experiences. They created common routines so that their lives could resemble those of ’normal’ families. These efforts seemed motivated by a fundamental striving for a stable family and home life. This ’striving for stability’ was sometimes undermined by limitations in family finances, family cohesion, and unpredictability of the child’s condition. (3) Conflicting social values: families were offended by the reactions that they faced in their everyday community. They believe that the child’s life is devalued, frequently referred to as a life not worth maintaining. They felt like strangers in their own communities, sometimes needing to seclude themselves within their homes. (4) Living in isolation: families reported a deep sense of isolation. In light of the complex medical needs of these children, neither the extended families nor the medical system could support the families’ respite needs. (5) What about the voice of the child? The children in this study (patients and siblings) were generally silent when asked to talk about their experience. Some children described their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the increased attention that their ventilated sibling was receiving. (6) Questioning the moral order: most families questioned the ’moral order’ of their lives. They contemplated how ’good things’ and ’bad things’ are determined in their world. Parents described their life as a very unfair situation, yet there was nothing that they could do about it. Finally, an overarching phenomenon that best characterizes these families’ experiences was identified: daily living with distress and enrichment. Virtually every aspect of the lives of these families was highly complicated and frequently overwhelming. An immediate interpretation of these findings is that families should be fully informed of the demands and hardships that would await them, encouraging parents perhaps to decide otherwise. This would be but a partial reading of the findings, because despite the enormous difficulties described by these families, they also reported deep enrichments and rewarding experiences that they could not imagine living without. Life with a child who requires assisted ventilation at home involves living every day with a complex tension between the distresses and enrichments that arise out of this experience. The conundrum inherent in this situation is that there are no simple means for reconciling this tension. This irreconcilability is particularly stressful for these families. Having their child permanently institutionalized or ’disconnected’ from ventilation (and life) would eliminate both the distresses and the enrichments. These options are outside the realm of what these families could live with, aside from the 1 family whose child is now permanently hospitalized, at a tremendous cost of guilt to the family. » (pp. e48-e49)