Survey of community-based programs serving U.S. families with Huntington's disease: perceived barriers and facilitators in the residential placement process.
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.
Lechich
Anthony J
AJ
Terence Cardinal Cooke, New York, NY 10029, USA. emailalechich@chesnet.org
Lovecky
Deborah
D
Moskowitz
Carol
C
Montas
Sybil
S
Duckett
Ayana
A
Pae
Anne
A
Knoblauch
Kathy
K
Saks
David
D
Toliver
Dorothy
D
Fogarty
Eileen
E
Pollard
James
J
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