BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in…
Background For youth with medical complexity and their families, the transition to adulthood is a stressful and disruptive period that is further complicated by the transfer from relatively integrated and familiar pediatric services to more…
BACKGROUND: Mucopolysaccharidoses (MPS) are rare inherited metabolic disorders that come under category three of life-limiting conditions. Children born with this condition show no symptoms at birth, but its effects show as a progressive disease in…
BACKGROUND: When young people with life-limiting diagnoses become too old for children's hospice services, they often experience challenges transitioning into adult services. A two-year pilot project was developed to try to aid transitioning, which…
Children with life-threatening illnesses (LTIs) are hospitalized more often and spend more days in the hospital than children without LTIs. Hospitalizations may be associated with changes in health status of children with LTIs and thus alter their…
OBJECTIVE:: This position statement from the Canadian Task Force on Adolescents and Young Adults with cancer aims to (1) conceptualize the numerous transition experiences encountered by adolescents and young adults (AYA) with cancer; and (2) provide…
BACKGROUND: Monitoring long-term health of teenage cancer survivors is dependent on successful transition from pediatric to adult long-term follow-up (LTFU) care. This study identified factors associated with self-management skills (SMSs), an…
Eighty-seven parents of children with Down Syndrome (DS; 63 women, 24 men) wrote narratives about finding out that their child had DS and completed questionnaire measures of subjective well-being (SWB) and stress-related growth and completed the…
BACKGROUND: Transition to adulthood is a significant development process experienced by all youth. Since the mid 1990s, researchers at the CanChild Centre for Childhood Disability Research have been studying this process to assist transitioning youth…
Adolescents with life-limiting illnesses have intensive end-of-life trajectories and could benefit from initiation of hospice services. The medical home model, which includes having a usual source of primary care, may help facilitate quality outcomes…
Children and adolescents with complex chronic conditions often receive pediatric palliative care (PPC) from health care professionals. However, children's needs exist both in a health care context and in the community where children interact with…
BACKGROUND:
Service providers face difficult decisions about how best to develop services for the increasing numbers of young people with life-limiting conditions who require palliative care.
OBJECTIVE:
To explore alternative short break and…
BACKGROUND:
With improvements in pediatric care and technology, more young adults (YAs) with life-limiting conditions (LLCs) are surviving into adulthood. However, they have limited expectations to live beyond the first decade of adulthood. This…
