Living in the In-Between
Families Caring for a Child With a Progressive Neurodegenerative Illness
Bibliographic Data
| ID | 4685740 |
|---|---|
| Authors | Lillian B Rallison (University of Calgary, Calgary, Alberta, Canada), Lillian Rallison (University of Calgary), Shelley Raffin-Bouchal (University of Calgary, Calgary, Alberta, Canada), Shelley Raffin‐bouchal (University of Calgary) |
| Year | 2013 |
| Volume | 23 |
| Issue | 2 |
| Pages | 194-206 |
| Publication date | 2013-02-01 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Qualitative Health Research (JOURNAL) |
| Journal identifiers | ISSN: 1049-7323 • E-ISSN: 1552-7557 |
| Publisher | SAGE Publications Inc (PUBLISHER) |
| DOI | 10.1177/1049732312467232 |
| PMID | 23175537 |
| OpenAlex | W2108174035 |
| Language | EN |
| Citations received | 6 |
| References cited | 29 |
Medical advances in recent years have led to an increased life span for children with progressive, neurodegenerative illnesses. The purpose of this hermeneutic inquiry was to explore the experience of families caring for their child at home. In-depth, audiorecorded interviews with six families (13 interviews) living in western Canada were transcribed and analyzed. The illness journey was revealed to be complex and unpredictable. We discovered many metaphors that spoke to the child's/family's life and explored the paradox of duality, such as holding both joy and sorrow, and containing both suffering and love. We outline implications for policy development within the area of respite care and coordination of services for families. The voices of families must be a vital component to influence and guide education and service development within the emerging specialty of pediatric palliative care
Developmental psychology · Palliative care · Psychiatry · Respite care · Sorrow · Specialty · Childhood Cancer Survivors' Quality of Life · Ethics and Legal Issues in Pediatric Healthcare · Family and Disability Support Research · Medicine · Nursing · Psychology · Social Psychology
Using Communication Tools to Explore Young Siblings’ Experiences of Having a Brother or Sister with Pediatric Palliative Care Needs
Shades of hope
The Meaning Given to Bioethics as a Source of Support by Physicians Who Care for Children Who Require Long-Term Ventilation
“Concurrent Ropes and Ladders”
Chronic Paradoxes
Health Care Professionals' Awareness of a Child's Impending Death
| Unique citing works | 6 |
|---|---|
| Citations per year | 1 |
| Citation span | 2020 - 2022 (3) |
| Citation velocity | historical |
| Highly cited | No |
| Citation types | Neutral: 6 |