Title

A Study of Siblings' Reaction to a Brother or Sister With a Tracheostomy, Compared to Siblings' Reaction to Other Chronic Pediatric Illnesses. Development of a Communication Tool for Siblings of Children's Hospital and Clinic's Tracheostomy Patients.

Author

Joan Marie Weber, Concordia University, St. Paul

Date

2001

Document Type

Thesis

Degree Name

Master of Arts

Chairperson (Advisor 1)

Dr. Kimora Kachelmyer

Reader (Advisor 2)

Diane Hinds

Abstract

A growing number of children with special health care needs are medically fragile and some are living today with assisted medical technology. There is a subgroup of medically fragile children that require medical devices to compensate for the loss of vital body function, for example a tracheostomy to breathe. In reviewing the literature, very little is written describing how siblings of tracheostomy dependent children are affected. This author raises the following question. Do siblings of tracheostomy children react in the same way as siblings of the chronically ill child? Are there some common reactions within this subgroup that can be identified? Upon completion of this research the author of this study will write a children's book that will be used to promote open communication, prepare and educate this population.

Twenty children age five to twelve were interviewed. Several reactions both positive and negative were identified. As found in the literature this subgroup felt increased care-giving responsibilities, expressed decreased family time and socialization, and worried about the well-being of the ill child. They also desired normalcy and wellness for their trached brother or sister.

Unlike results of previous studies, the author found that the children interviewed were very informed, and able to describe their brother and sister's illness. The siblings were very involved in the cares of the child and could describe them in detail. They did not report anger or resentment regarding increased cares but rather felt good about their involvement.

This subgroup appeared to have unique worries of airway obstruction perhaps resulting in death. As reported in the literature most were reluctant to share feelings and worries with others.

Three main themes were repeatedly found in the interviews: increased care-giving responsibilities, isolation and decreased socialization with less time spent together as a family, and persistent fears or worries regarding the well-being of the ill child. All of the children desired normalcy and wellness for their brother or sister.

Families caring for a trached child experience stresses that are not found in families with healthy children. It has been identified through previous research that stresses of having a chronically ill child in the home effects all members of the family, including the siblings. Many books are available for siblings of children with pediatric chronic illnesses such as diabetes, asthma and cystic fibrosis but a sibling book for tracheostomies is not available. Therefore, a child's story, for seven-year olds (the mean age of the study group) was written addressing the above themes.

Recommended Citation