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It's a family affair: consumer advocacy for nursing-home residents in the United States

Published online by Cambridge University Press:  03 November 2008

CHARLES D. PHILLIPS ,
ANNE-MARIE KIMBELL ,
CATHERINE HAWES ,
JANET WELLS ,
JEAN BADALAMENTI  and
MARY JANE KOREN
CHARLES D. PHILLIPS*
Affiliation:
School of Rural Public Health, Department of Health Policy and Management, Texas A&M University, College Station, Texas, USA.
ANNE-MARIE KIMBELL
Affiliation:
School of Rural Public Health, Department of Health Policy and Management, Texas A&M University, College Station, Texas, USA.
CATHERINE HAWES
Affiliation:
School of Rural Public Health, Department of Health Policy and Management, Texas A&M University, College Station, Texas, USA.
JANET WELLS
Affiliation:
National Citizens' Coalition for Nursing Home Reform, Washington DC, USA.
JEAN BADALAMENTI
Affiliation:
National Citizens' Coalition for Nursing Home Reform, Washington DC, USA.
MARY JANE KOREN
Affiliation:
The Commonwealth Fund, New York, USA.
*
Address for correspondence: School of Rural Public Health, Department of Health Policy and Management, 1266 Texas and AM University, College Station, TX 77843-1266, USA. E-mail: phillipscd@srph.tamhsc.edu
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Abstract

Nursing homes in the United States have for over 40-years been riddled with evidence of poor performance. To combat problems in this industry, state and federal governments developed an elaborate monitoring and regulatory structure. At the same time, an important citizens' movement involving nursing-home consumer advocacy groups (CAGs) came to life. This paper presents the results of a postal survey of 47 active nursing-home consumer advocacy groups. They indicate that the majority of these organisations were started by an individual dissatisfied with the care provided to a family member. The political arena in which these organisations were most active was State legislatures. Though they varied considerably, the average CAG operated on a thin financial margin, largely supported by member contributions and donations. These organisations defined their success in terms of their ability to generate policy changes at the State level. Unfortunately, as they pursued these changes, they often failed to develop the organisational infrastructure necessary to assure the CAGs' continued operation. When CAGs ceased operations, it was in most cases the loss of the organisation's original leader or the cumulative effects of the constant struggle to maintain adequate financial resources.

Keywords

ageingnursing homesquality of careconsumer advocacy
Type
Research Article
Information
Ageing & Society , Volume 28 , Issue 1 , January 2008 , pp. 67 - 84
Copyright
Copyright © Cambridge University Press 2008

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