title: Survey of community-based programs serving U.S. families with Huntington's disease: perceived barriers and facilitators in the residential placement process.
abstract: This article describes the contours of the residential care placement experience for social service staff health care providers, and their client families of patients with Huntington's disease. The purpose of this study was to determine the factors, conditions, and barriers encountered by outpatient clinical staff and families in the transition to skilled nursing care. A Long-Term Care Contact Survey was developed to (a) gather information about long-term care referral sites; (b) determine the factors considered in choosing a facility; (c) describe the factors that hindered the transition to long-term care; (d) describe conditions prior to institutionalization; and (e) determine research interest. The study found that large cohorts of patients with Huntington's disease in residential care are scarce. A lack of confidence in the available options suggests the need for increased support for educational and social services to facility staff Speech/swallowing therapy and physical therapy as placement facilitators reflect salient issues of latter stages of the disease, implicating funding support needs. Families facing this transition require long-term guidance for financiail, caregiving, and psychosocial issues.
authors.affiliation: Terence Cardinal Cooke, New York, NY 10029, USA. emailalechich@chesnet.org
authors.forename: Anthony J
authors.initials: AJ
authors.lastname: Lechich
authors.forename: Deborah
authors.initials: D
authors.lastname: Lovecky
authors.forename: Carol
authors.initials: C
authors.lastname: Moskowitz
authors.forename: Sybil
authors.initials: S
authors.lastname: Montas
authors.forename: Ayana
authors.initials: A
authors.lastname: Duckett
authors.forename: Anne
authors.initials: A
authors.lastname: Pae
authors.forename: Kathy
authors.initials: K
authors.lastname: Knoblauch
authors.forename: David
authors.initials: D
authors.lastname: Saks
authors.forename: Dorothy
authors.initials: D
authors.lastname: Toliver
authors.forename: Eileen
authors.initials: E
authors.lastname: Fogarty
authors.forename: James
authors.initials: J
authors.lastname: Pollard
mesh_terms: D003153:Community Health Services / Q000458:organization & administration*; D005190:Family / Q000523:psychology*; D019538:Health Care Surveys; D006297:Health Services Accessibility; D006801:Humans; D006816:Huntington Disease / Q000523:psychology* / Q000628:therapy; D008134:Long-Term Care; D015397:Program Evaluation; D012112:Residential Facilities; D012866:Skilled Nursing Facilities; D012938:Social Perception; D014481:United States