Ventilator-Assisted Living©

Summer 2005, Vol. 19, No. 2

(continued)

The Experiences of Families with Ventilator-Assisted Children at Home

Franco A. Carnevale, RN, PhD, Eren Alexander, RN, MSc (A), Michael Davis, MD, Janet Rennick, RN, PhD, Rita Tronini, RRT, MA, Montreal Children’s Hospital and Montreal Chest Institute/McGill University, Montreal, Canada (frank.carnevale@muhc.mcgill.ca)

The aim of this study* was to learn about the moral experience of families with children requiring assisted ventilation at home. We wanted to learn about the struggles over “right and wrong” that these families faced. We recruited twelve families through the Home Ventilatory Assistance Program in Quebec, Canada.

Thirty-eight family members participated in the study, including the children, their parents and siblings. Ventilator-assisted children ranged in age from 1.8 to 19 years of age.

Their diagnoses included central hypoventilation syndrome, muscular dystrophy, spina bifida, obstructive apnea, spinal amyotrophy and various myopathies. About half of the children used invasive ventilation; the other half used noninvasive ventilation.

We studied family moral experiences by using interviews and home visit observations. The entire study was conducted in the homes of these families. A number of important issues were identified.

Findings. Most importantly, it was found that the overarching theme that best characterized these families’ experiences is “daily living with distress and enrichment.” In other words, the lives of these families are clearly very stressful, but the magnitude of this stress did not appear directly related to whether the child required invasive or noninvasive ventilation.

However, these ventilator-assisted children also provide families with important possibilities for enrichment. It would be simplistic and mistaken to conclude that these children should not have been kept alive just because their care is stressful for everyone. Not having allowed these children to live would not make everything better.

As one mother stated, “She’s a sweet little girl. She’s really worth it. So I think when you look past her disability, well, even with her disability she’s a beautiful individual, and I couldn’t even begin to think of life without her. It is a bit more complicated but it’s worth every little bit of effort that you put into it because you receive so much back in return. It’s really nice to have her in our life – without her I think it would really be really, really sad.”

It is important that we attend to the additional issues identified by these families to help us find ways to facilitate their lives. These issues included:

Confronting parental responsibility. Parental responsibility was generally regarded as stressful and frequently overwhelming. Parents were required to devote an exceptional amount of care and vigilance toward their children’s needs. They struggled with immense emotional strain, the significant physical and psychological dependence of the child, the impact on family relation-ships, living with the daily threat of death, and feeling that there is really “no free choice” in the matter (they could not really have chosen other than to keep the child alive). Photo of two-year-old Daphne in her mother's arms after the insertion of a diaphragmatic pacer.

Two-year-old Daphne and her mother following insertion of a diaphragmatic pacer.

Seeking normality. All of the families actively worked to normalize their experiences. They established common routines so that their lives resembled the lives of “normal” families as much as possible.

Conflicting social values. Families were hurt by the reactions they en-countered in their everyday lives in their communities. They sensed that the child’s life was devalued by others – commonly regarded as a life not worth sustaining. They felt like strangers in their own communities, frequently feeling obliged to seclude themselves within their homes.

Living in isolation. Families experienced a profound sense of isolation. Given the complex medical needs of these children, neither the extended families nor the medical system could provide adequate respite.

What about the voice of the child? The children in this study, both patients and siblings, were generally silent when asked to talk about their experience. Some children referred to their ventilators as good things. They helped them breathe and feel better. Some siblings expressed resentment toward the attention that their ventilator-assisted sibling was receiving.

Questioning the moral order. Most families questioned the moral order within their lives. They wondered how “good things” and “bad things” are determined in the world. Parents said that this is a very unfair situation but there is nothing that you can do about it.

Conclusions. These findings highlight the need for increased sensitization to the needs of this population among staff in critical care, acute and community settings. Integrated community services are required to help alleviate the significant distress endured by these families.

Ed. Note: The complete report will be published in a forthcoming issue of Pediatrics.

*The Toronto SickKids Foundation National Grants Program and The Canadian Children and Youth Home Care Network financially supported this study.

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