Distributor:  The Fanlight Collection
Length:  41 minutes
Date:  2007
Genre:  Expository
Language:  English
Color/BW:  Color
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Precious Lives, Meaningful Choices

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Parents describe the enormous challenges they face with children with severe disabilities.

Precious Lives, Meaningful Choices

From the University of Calgary Teaching and Learning Centre. Among children with multiple special needs are some whose medical conditions will severely limit their potential lives. Their families struggle to give them the best possible quality of life while knowing that the time they have is limited. In this film four families share their experiences.

Shaian Hasheminia was born with a rare neurodegenerative disease. He cannot hold his head up, and must be catheterized, tube-fed, and frequently suctioned. Cassandra Patterson was born with a rare genetic deletion. She's now 18 months old, has multiple medical issues, and is deaf. Ronan Houghton had an undiagnosed neurodegenerative condition, yet was able to attend school in a wheelchair with the constant attendance of an aide. He died at five. David Walsh is seven years old and has Infant Refsum's disease. He has no muscular control, and needs hearing aids and leg braces. He goes to school, but must return home at lunch for tube feeding.

Among the challenges their parents discuss are finding and training care assistants; dealing with caregiver turnover; coping with medical staff unfamiliar with these rare conditions; meeting the needs of the family's other children; and, most of all, dealing with constant uncertainty about when the end will come.

One parent talks despairingly about how tired she had become of teaching hospital staff about her child's condition. When she asked that she not have to deal with any more student nurses, she was labeled a 'difficult' parent. Other parents point out that staff see the children at their worst, disoriented and stressed by the hospital environment. They don't see the quality of life the children experience at home, and therefore assume that the parents are just waiting for the child to die, and do not want anything other than palliative care. One parent talks of being repeatedly pressured to sign a do-not-resuscitate order, and told she didn't understand how serious the situation was. Yet families talk about positive conversations with medical professionals as well, and of the ways that physicians and nurses have helped them to deal with their situations.

These families are embracing their children's lives with courage, love, and hope in the midst of uncertainty. Their reflections will be enormously supportive for parents in similar situations, and will help healthcare providers gain insight into how such families learn to cope with children who have progressive, life-limiting illnesses.

No reviews available.

Awards

Western Psychological Association
National Health Information, Bronze Award

Citation

Main credits

Fountain, Fred (film director)
Fountain, Fred (film producer)

Other credits

Camera/editor, Lawrie Edison.


Distributor credits

University of Calgary

Fred Fountain

University of Calgary
Fred Fountain

Docuseek2 subjects

Disabilities
Maternal and Child Health
Nursing Education
Medical ethics
Parenting
Death and Dying
Grief and Recovery

Distributor subjects

Death and Dying
Family Relations
Grief and Recovery
Parenting and Childbirth
Psychology, Psychiatry, Social Work

Keywords

film; video; documentary; calgary health region; university of Calgary; bev berg; lillian rallison; childrens hospital; grief support; nursing; pediatric ; pediatrics; palliative care; palliation; pain management; special needs; death; bereaved; bereavement; grieving; grief groups; medically fragile; life threatening illness; life limiting illness; life limiting illness; hospice; respite; disability; disabilities; disabled; crippled; handicap; handicapped; challenged; accessible; accessibility; physical rehabilitation; developmental disabilities; family; families; parent; parents; parenting; children; childbirth; health care; healthcare; illness; disease; patient; nurse; nursing; doctor; medicine; physician; hospital; ethics; ethical; moral; morality; social policy; grieving ; grief; loss; recovery; bereavement; coping; death; dying; end-of-life care; end of life; terminal illness; caregiver; caregiving; ; "Precious Lives, Meaningful Choices"; The Fanlight Collection

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