title: Myelodysplasia in adult life: the value of an outreach nursing service.
abstract: In the state of South Australia, infants with myelodysplasia have been treated by early intervention since 1963, and the majority have survived. Many are now adults, leading active lives despite having severe disabilities. A pilot study confirmed that this population has a high incidence of preventable ill health because of recurrent urinary infections, renal damage, and pressure ulcers. Many of these complications can be prevented by an outreach nursing service aimed at providing education in self-care, counseling, advocacy, and other appropriate nursing interventions, thus allowing clients to avoid hospitalization and maintain their independence. The study also showed that many clients were unaware of important social benefits, the knowledge of which should promote their financial independence. The outreach nursing service is an essential part of an integrated long-term support program for adults with myelodysplasia and other forms of congenital spinal paralysis.
authors.affiliation: University of Adelaide, Australia.
authors.forename: J
authors.initials: J
authors.lastname: Goodger
authors.forename: J
authors.initials: J
authors.lastname: Kulas
authors.forename: A
authors.initials: A
authors.lastname: Carney
authors.forename: P
authors.initials: P
authors.lastname: Dewan
authors.forename: E
authors.initials: E
authors.lastname: Kosmala
authors.forename: D A
authors.initials: DA
authors.lastname: Simpson
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D003152:Community Health Nursing / Q000458:organization & administration*; D003159:Community-Institutional Relations; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009436:Neural Tube Defects / Q000451:nursing* / Q000534:rehabilitation*; D015403:Nursing Evaluation Research; D010353:Patient Education as Topic; D010865:Pilot Projects; D015397:Program Evaluation; D019145:Rehabilitation Nursing / Q000458:organization & administration*; D012648:Self Care; D013021:South Australia