FAMILIES AT RISK: Quality of Life in Technology-Dependent Children and their Families.
When children require medical technology, most families focus on issues of survival. Medical technology also impacts on the quality of life of the child and all those involved with their care. Medical technology is an enormous physical and emotional commitment. Many of these children receive medical services, including home nursing visits through Medicaid. These services would be severely effected by cuts to this program.
I found few articles in the medical literature describing these issues, so I undertook an informed study with our parent support group to explore these issues. The group includes parents of children between the ages of 3 and 19 who are dependent upon technology (tube feedings Tube Feedings Definition
Nutrients, either a special liquid formula or pureed food, are delivered to a patient through a tube directly into the gastrointestinal tract, usually into the stomach or small intestine. , tracheostomies, ventilators, complex assistive devices assistive device Public health Any device designed or adapted to help people with physical or emotional disorders to perform actions, tasks, and activities. See Americans with Disabilities Act, Architectural barriers, Assistive technology. , and therapies). We also gathered information from focused discussion groups with parents, siblings siblings npl (formal) → frères et sœurs mpl (de mêmes parents) , and healthcare workers (home- and hospital-based nurses and social workers).
What is "quality of life" for a child who is dependent on technology?
Parents express concerns that healthcare professionals, in particular the initial treating physicians, do not discuss quality of life issues and the long-term outlook with them. Both groups felt that the physicians initially focus on survival rather than on quality of life without an adequate discussion of the effects that caring for the child will have on the rest of the family.
Families complain that their religious beliefs were ignored when decisions about life support were made and that they were not included in discussions about discontinuing support. Some viewed technological support as experimentation. Healthcare workers felt that physicians made decisions about technology and support based on fears of liability suits. Overall, our group felt that our ability to use technology exceeds the sociological and ethical understanding of its impact.
The parents and healthcare workers involved in our study considered quality of life in terms of physical comfort and the ability to function. This includes:
* the child's basic needs are met (e.g. food, shelter, education);
* the child is living at home comfortably (e.g. positioning and medical care);
* any pain is being managed;
* the child's need for happiness, dignity, respect, and self-esteem are being met;
* the child is capable of social an has an opportunity for interaction;
* the child has an opportunity to achieve as much independence as possible, considering his or her particular disabilities.
What is the family's "quality of life?"
One parent emphasized that, "life was more than breathing."
The needs of a child who is dependent on technology becomes the focus of the family. The parents and siblings have a right to have their needs for comfort and independence met. Our group agreed that the following can interfere with these needs:
* physical and mental anguish When connected with a physical injury, includes both the resultant mental sensation of pain and also the accompanying feelings of distress, fright, and anxiety. As an element of damages implies a relatively high degree of mental pain and distress; it is more than mere disappointment, including exhaustion Exhaustion
Situation in which a majority of participants trading in the same asset are either long or short, leaving few investors to take the other side of the transaction when participants wish to close their positions. , burnout Burnout
Depletion of a tax shelter's benefits. In the context of mortgage backed securities it refers to the percentage of the pool that has prepaid their mortgage. , resentment, grief, depression, and suicidal su·i·cid·al
1. Of or relating to suicide.
2. Likely to attempt suicide. thoughts;
* fear of divorce and disordered aging;
* inhibition of normal family functions and loss of mobility issues.
* isolation from traditional family and social circles;
* lack of respite care Respite Care
Short-term or temporary care of a few hours or weeks of the sick or disabled to provide relief, or respite, to the regular caregiver, usually a family member.
* injuries resulting from providing care.
Positive aspects of parenting a child with a disability include improved acceptance of other persons with disabilities, personal growth, and intangible rewards such as feelings of accomplishment derived from providing a good quality of life for the child. Healthcare workers fear that parents will make overly optimistic op·ti·mist
1. One who usually expects a favorable outcome.
2. A believer in philosophical optimism.
op interpretations of the initial information provided by medical professionals.
Home nursing increases time available for family activities and optimizes the child's medical care, often avoiding hospitalization hospitalization /hos·pi·tal·iza·tion/ (hos?pi-t'l-i-za´shun)
1. the placing of a patient in a hospital for treatment.
2. the term of confinement in a hospital. , but there were concerns voiced as well. Parents noted frustration when promised a particular level of service at the time of hospital discharge planning, only to have these services pulled away at intervals coming or happening with intervals between; now and then.
See also: Interval once home. Parents felt the need to become comfortable moving in and out of the medical role depending on whether a nurse is present. They must accept variable quality and inconsistent availability in nursing services, and the lack of privacy that having a stranger in the house creates.
Quality of life--more than survival
Parents and healthcare workers agree that cuts in Medicaid services would decrease quality of life for both the child and the family. The resulting lack of nursing services would lead to increased fatigue, frustration, and sleep deprivation sleep deprivation Sleep disorders A prolonged period without the usual amount of sleep. See Driver fatigue, Poor sleeping hygiene, Sleep disorders, Sleep-onset insomnia. , as well as further erosion of family activities. Parents also worry that fatigue-induced error could affect their child's overall health, as could the lack of input from professionals. Any cuts in Medicaid would result in family responsibility and expenditure for care. These stresses can weigh heavily on all family members, even the siblings, who voiced fears of poverty and divorce.
Parents, for their part, feel it is unrealistic to expect that they can provide proper nursing care for the child while parenting other children, working, maintaining marital relationships Noun 1. marital relationship - the relationship between wife and husband
family relationship, kinship, relationship - (anthropology) relatedness or connection by blood or marriage or adoption , and performing household duties.
This medically and psychosocially fragile population is in need of ongoing forums for discussing quality of life issues in addition to receiving respite RESPITE, contracts, civil law. An act by which a debtor who is unable to satisfy his debts at the moment, transacts (i. e. compromises) with his creditors, and obtains from them time or delay for the payment of the sums which he owes to them. Louis. Code, 3051. services and advocacy from their healthcare team.
Dennis J. Baumgardner, MD, is the parent of a 5-year-old son who has multiple disabilities and spent his first 4 1/2 years on a ventilator ventilator /ven·ti·la·tor/ (ven´ti-la-tor)
1. an apparatus for qualifying the air breathed through it.
2. a device for giving artificial respiration or aiding in pulmonary ventilation. . Dennis and his wife, Mary, are the parents of seven children and actively participate in a support group for parents and caregivers of technology-dependent children. This article is adapted from: "Quality-of-Life in Technology-Dependent Children Receiving Home Care, and Their Families--A Qualitative Study" by D.J. Baumgardner and E.D. Burtea, published in the Wisconsin Medical Journal, 1998(3):51-55.