Family involvement in residential long-term care: A synthesis and critical review

References

• Anderson , KH , Hobson , A , Steiner , P and Rodel , B . 1992 . Patients with dementia: Involving families to maximize nursing care . Journal of Gerontological Nursing , 18 : 19 – 25 .
   PubMedGoogle Scholar
• Aneshensel CS Pearlin LI Mullan JT Zarit SH Whitlatch CJ 1995 Profiles in caregiving: The unexpected career San Diego Academic Press
   Google Scholar
• Arcus , ME . 1987 . A framework for life-span family life education . Family Relations , 38 : 5 – 10 .
   Google Scholar
• Arcus , ME . 1992 . Family life education: Toward the 21st century . Family Relations , 41 : 390 – 393 .
   Web of Science ®Google Scholar
• Bates RC 1968 The fine art of understanding patients Oradell, New Jersey Medical Economics Book Division
   Google Scholar
• Berk , RA . 1983 . An introduction to sample selection bias in sociological data . American Sociological Review , 48 : 386 – 398 .
   Web of Science ®Google Scholar
• Bitzan , JE and Kruzich , JM . 1990 . Interpersonal relationships of nursing home residents . Gerontologist , 30 : 385 – 390 .
   PubMed Web of Science ®Google Scholar
• Blum RH 1960 Management of the doctor-patient relationships New York McGraw Hill
   Google Scholar
• Bonder , BR , Miller , B and Linsk , N . 1991 . Who should do what? Staff and family responsibilities for persons with Alzheimer's disease in nursing homes . Clinical Gerontologist , 10 : 80 – 84 .
   Google Scholar
• Bowers , BJ . 1988 . Family perceptions of care in a nursing home . The Gerontologist , 28 : 361 – 368 .
   PubMed Web of Science ®Google Scholar
• Brooke V Drew JC 1999 The Eden Alternative Evaluation Research Program: Residents, staff, family, and quality indicators, June 1997–June 1999 Galveston TX The University of Texas Medical Branch
   Google Scholar
• Brubaker , TH and Roberto , KA . 1992 . Family life education for the later years . Family Relations , 42 : 212 – 221 .
   Web of Science ®Google Scholar
• Cantor , MH . 1983 . Strain among caregivers: A study of experience in the United States . The Gerontologist , 23 : 597 – 604 .
   PubMed Web of Science ®Google Scholar
• Caron , W , Hepburn , K , Luptak , M , Grant , L , Ostwald , S and Keenan , J . 1999 . Expanding the discourse of care: Family constructed biographies of nursing home residents . Families, Systems & Health , 17 : 323 – 335 .
   Google Scholar
• Cath , SH . 1972 . The institutionalization of a parent: A nadir of life . Journal of Geriatric Psychiatry , 5 : 25 – 46 .
   PubMedGoogle Scholar
• Coleman , MT , Looney , S , O’Brien , J , Ziegler , C , Pastorino , CA and Turner , C . 2002 . The Eden Alternative: Findings after 1 year of implementation . Journal of Gerontology: Medical Sciences , 57A : M422 – M427 .
   Google Scholar
• Cox , C and Ephross , PH . 1989 . Group work with families of nursing home residents: Its socialization and therapeutic functions . Journal of Gerontological Social Work , 13 : 61 – 73 .
   Web of Science ®Google Scholar
• Davis , LL and Buckwalter , K . 2001 . Family caregiving after nursing home admission . Journal of Mental Health and Aging , 7 : 361 – 379 .
   Google Scholar
• Dilworth-Anderson , P . 2001 . Family issues and the care of persons with Alzheimer's disease . Aging & Mental Health , 5 : S49 – S51 .
   PubMedGoogle Scholar
• Dobrof RD Litwak E 1977 Maintenance of family ties of long-term care patients Bethesda MD National Institute of Mental Health
   Google Scholar
• Drew , JC and Brooke , V . 1999 . Changing a legacy: The Eden Alternative nursing home . Annals of Long-Term Care , 7 : 115 – 121 .
   Google Scholar
• Duncan , MT and Morgan , DL . 1994 . Sharing the caring: Family caregivers’ views of their relationships with nursing home staff . The Gerontologist , 34 ( 2 ) : 235 – 244 .
   PubMed Web of Science ®Google Scholar
• Fabisewski , KJ and Howell , MC . 1986 . A model for family meetings in the long term care of Alzheimer's disease . Journal of Gerontological Social Work , 9 : 113 – 117 .
   Web of Science ®Google Scholar
• Friedemann , ML , Montgomery , RJ , Maiberger , B and Smith , AA . 1997 . Family involvement in the nursing home: Family-oriented practices and staff-family relationships . Research in Nursing and Health , 20 : 527 – 537 .
   PubMed Web of Science ®Google Scholar
• Friedemann , ML , Montgomery , RJ , Rice , C and Farrell , L . 1999 . Family involvement in the nursing home . Western Journal of Nursing Research , 21 ( 4 ) : 549 – 567 .
   PubMed Web of Science ®Google Scholar
• Gaugler , JE and Kane , RA . 2001 . Informal help in the assisted living setting: A one-year analysis . Family Relations , 50 ( 4 ) : 335 – 347 .
   Web of Science ®Google Scholar
• Gaugler , JE , Kane , RL and Kane , RA . 2002 . Family care for older people with disabilities: Towards more targeted and interpretable research . International Journal of Aging and Human Development , 54 ( 3 ) : 205 – 231 .
   PubMed Web of Science ®Google Scholar
• Gaugler , JE , Leitsch , SA , Zarit , SH and Pearlin , LI . 2000 . Caregiver involvement following institutionalization: Effects of preplacement stress . Research on Aging , 22 ( 4 ) : 337 – 359 .
   Web of Science ®Google Scholar
• Gottesman , LE . 1974 . Nursing home performance as related to resident traits, ownership, size, and source of payment . American Journal of Public Health , 64 : 269 – 276 .
   PubMed Web of Science ®Google Scholar
• Greene , V and Monahan , D . 1982 . The impact of visitation on patient well-being in nursing homes . Gerontologist , 22 : 418 – 423 .
   PubMed Web of Science ®Google Scholar
• Greenfield , WL . 1984 . Disruption and reintegration: Dealing with familial response to nursing home placement . Journal of Gerontological Social Work , 8 : 15 – 21 .
   Web of Science ®Google Scholar
• Haight , BK , Michel , Y and Hendrix , S . 2000 . The extended effects of the life review in nursing home residents . International Journal of Aging and Human Development , 50 : 151 – 168 .
   PubMed Web of Science ®Google Scholar
• Hansen , SS , Patterson , MA and Wilson , RW . 1988 . Family involvement on a dementia unit: The Resident Enrichment and Activity Program . The Gerontologist , 4 : 508 – 511 .
   Web of Science ®Google Scholar
• Hawes C Rose M Phillips CD Iannacchione MS 1999 A national study of assisted living for the frail elderly: Results of a national telephone survey of facilities Cleveland OH Myers Research Institute, Menorah Park Center for the Aging
   Google Scholar
• Heckman , JJ . 1979 . Sample selection bias as specification error . Econometrica , 47 : 153 – 161 .
   Web of Science ®Google Scholar
• Helphand , M and Porter , CM . 1982 . The family group within the nursing home: Maintaining family ties of long-term care residents . Journal of Gerontological Social Work , 4 : 51 – 62 .
   Web of Science ®Google Scholar
• Hepburn , KW , Caron , W , Luptak , M , Ostwald , S , Grant , L and Keenan , JM . 1997 . The Families Stories Workshop: Stories for those who cannot remember . The Gerontologist , 37 : 827 – 832 .
   PubMed Web of Science ®Google Scholar
• Hertzberg , A , Ekman , SL and Axellson , K . 2001 . Staff activities and behaviour are the source of many feelings: Relatives’ interactions and relationships with staff in nursing homes . Journal of Clinical Nursing , 10 : 380 – 388 .
   PubMed Web of Science ®Google Scholar
• Hinman , MR and Heyl , DH . 2002 . Influence of The Eden Alternative on the functional status of nursing home residents . Physical and Occupational Therapy in Geriatrics , 20 : 1 – 20 .
   Google Scholar
• Hollis , A and Campbell , F . 1999 . What is meant by intention to treat analysis? Survey of published randomised controlled trials . British Medical Journal , 19 : 670 – 674 .
   Web of Science ®Google Scholar
• Hook , WF , Sobal , J and Oak , JC . 1982 . Frequency of visitation in nursing homes: Patterns of contact across the boundaries of total institutions . Gerontologist , 22 : 424 – 428 .
   PubMed Web of Science ®Google Scholar
• Hopp , FB . 1999 . Patterns and predictors of formal and informal care among elderly persons living in board and care homes . The Gerontologist , 39 : 167 – 176 .
   PubMed Web of Science ®Google Scholar
• Jones , DC . 1972 . Social isolation, interaction, and conflict in two nursing homes . The Gerontologist , 12 : 230 – 234 .
   PubMed Web of Science ®Google Scholar
• Kane , RA . 1995 . Expanding the home care concept: Blurring distinctions among home care, institutional care, and other long-term care services . The Milbank Quarterly , 73 ( 2 ) : 161 – 186 .
   PubMed Web of Science ®Google Scholar
• Kane , RA . 2001 . Long-term care and a good quality of life: Bringing them closer together . Gerontologist , 41 : 293 – 304 .
   PubMed Web of Science ®Google Scholar
• Kane RA Illston LH Kane RL Nyman JA 1989 Adult foster care in Oregon: Evaluation Minneapolis MN Division of Health Services Research and Policy, The University of Minnesota
   Google Scholar
• Kane RA Wilson KB 1993 Assisted living in the United States: A new paradigm for residential care for frail older persons Washington D.C. American Association of Retired Persons
   Google Scholar
• Karner , TX , Montgomery , RJV , Dobbs , D and Wittmaier , C . 1998 . Increasing staff satisfaction: The impact of SCUs and family involvement . Journal of Gerontological Nursing , 24 : 39 – 44 .
   PubMedGoogle Scholar
• Keefe , J and Fancey , P . 2000 . The care continues: Responsibility for elderly relatives before and after admission to a long term care facility . Family Relations , 49 : 235 – 243 .
   Web of Science ®Google Scholar
• Kellett , UM . 1998 . Meaning-making for family carers in nursing homes . International Jorunal of Nursing Practice , 4 : 113 – 119 .
   PubMedGoogle Scholar
• Kellett , UM . 1999 . Transition in care: Family carers’ experience of nursing home placement . Journal of Advanced Nursing , 29 ( 6 ) : 1474 – 1481 .
   PubMed Web of Science ®Google Scholar
• Kelley , LS , Swanson , E , Maas , ML and Tripp-Reimer , T . 1999 . Family visitation on special care units . Journal of Gerontological Nursing , 25 : 14 – 21 .
   PubMedGoogle Scholar
• Kiely , DK , Simon , SE , Jones , RN and Morris , JN . 2000 . The protective effect of social engagement on mortality in long-term care . Journal of the American Geriatrics Society , 48 : 13676 – 11372 .
   Web of Science ®Google Scholar
• Kolb , PJ . 2000 . Continuing to care: Black and Latina daughters’ assistance to their mothers in nursing homes . Affilia: Journal of Women and Social Work , 15 : 502 – 525 .
   Web of Science ®Google Scholar
• Lewis , MA , Kane , RL , Cretin , S and Clark , V . 1985 . The immediate and subsequent outcomes of nursing home care . American Journal of Public Health , 75 : 758 – 762 .
   PubMed Web of Science ®Google Scholar
• Linsk , NL , Miller , B , Pflaum , R and Ortigara-Vick , A . 1988 . Families, Alzheimer's disease, and nursing homes . Journal of Applied Gerontology , 7 ( 3 ) : 331 – 349 .
   Google Scholar
• Litwak E 1985 Helping the elderly: The complimentary roles of informal networks and formal systems New York Guilford Press
   Google Scholar
• Maas ML Swanson E Buckwalter KC Lenth R Specht JP et al. 2000 Nursing interventions for Alzheimer's family role trials: Final report (RO1NR01689) Iowa City University of Iowa
   Google Scholar
• Max , W , Webber , P and Fox , P . 1995 . Alzheimer's disease: The unpaid burden of caring . Journal of Aging and Health , 7 : 179 – 199 .
   PubMed Web of Science ®Google Scholar
• Miller , RB and Wright , DW . 1995 . Detecting and correcting attrition bias in longitudinal family research . Journal of Marriage and the Family , 57 : 921 – 929 .
   Web of Science ®Google Scholar
• Mitchell , JM and Kemp , BJ . 2000 . Quality of life in assisted living homes: A multidimensional analysis . Journal of Gerontology: Psychological Sciences , 55B ( 2 ) : P117 – P127 .
   Google Scholar
• Monahan , DJ . 1995 . Informal caregivers of institutionalized dementia residents: Predictors of burden . Journal of Gerontological Social Work , 23 : 65 – 82 .
   Web of Science ®Google Scholar
• Montgomery , RJV . 1982 . Impact of institutional care policies on family integration . Gerontologist , 22 : 54 – 58 .
   PubMed Web of Science ®Google Scholar
• Montori , VM and Guyatt , GH . 2001 . Intention-to-treat principle . Canadian Medical Association Journal , 165 : 1339 – 1341 .
   PubMed Web of Science ®Google Scholar
• Mor V Branco K Fleishman J Hawes C Phillips C Morris J et al. 1995 The structure of social engagement among nursing home residents Journal of Gerontology: Psychological Sciences 50B P1 P8
   Google Scholar
• Morse JM Swanson JM Kuzel AJ 2001 The nature of qualitative evidence Thousand Oaks CA Sage Publications
   Google Scholar
• Moss , MS and Kurland , P . 1979 . Family visiting with institutionalized mentally impaired aged . Journal of Gerontological Social Work , 1 : 271 – 278 .
   Google Scholar
• Moss , MS , Lawton , MP , Kleban , MH and Duhamel , L . 1993 . Time use of caregivers of impaired elderly before and after institutionalization . Journal of Gerontology , 48 ( 3 ) : S102 – S111 .
   PubMedGoogle Scholar
• Moulton , HJ . 1993 . Linkages between nursing homes and families: A literature review . Physical and Occupational Therapy in Geriatrics , 11 : 1 – 12 .
   Google Scholar
• Naleppa , MJ . 1996 . Families and the institutionalized elderly: A review . Journal of Gerontological Social Work , 27 : 87 – 111 .
   Web of Science ®Google Scholar
• National Center for Health Statistics 1977 Characteristics, social contacts, and activities of nursing home residents, United States, 1973–4. Vital and health statistics Series 13, No. 27, DHEW Publishing No. (HRA) 77-1778 Washington D.C. United States Government Printing Office
   Google Scholar
• National Center for Health Statistics 1979 The national nursing home survey: 1977 summary for the United States. Vital and health statistics Series 13, No. 43, DHEW Publication (PHS) 79-1794 Washington D.C. United States Government Printing Office
   Google Scholar
• Noelker , L and Harel , Z . 1978 . Predictors of well-being and survival among institutionalized aged . The Gerontologist , 18 : 562 – 567 .
   PubMed Web of Science ®Google Scholar
• Palmer , DS . 1991 . Co-leading a family council in a long-term care facility . Journal of Gerontological Social Work , 16 : 121 – 134 .
   Web of Science ®Google Scholar
• Peak , T . 2000 . Families and the nursing home environment: Adaptation in a group context . Journal of Gerontological Social Work , 33 : 51 – 66 .
   Web of Science ®Google Scholar
• Penrod , JD , Kane , RA and Kane , RL . 2000 . Effects of post-hospital informal care on nursing home discharge . Research on Aging , 22 ( 1 ) : 66 – 82 .
   Web of Science ®Google Scholar
• Pillemer , K , Hegeman , CR , Albright , B and Henderson , C . 1998 . Building bridges between families and nursing home staff: The Partners in Caregiving Program . The Gerontologist , 38 : 499 – 503 .
   PubMed Web of Science ®Google Scholar
• Pillemer K Suitor JJ Henderson CR Meador R Schultz L Robison J et al. 2002 A cooperative communication intervention for nursing home staff and family members of residents. Manuscript under review
   Google Scholar
• Popay , J , Rogers , A and Williams , G . 1998 . Rationale and standards for the systematic review of qualitative literature in health services research . Qualitative Health Research , 8 : 341 – 351 .
   PubMed Web of Science ®Google Scholar
• Port CL Gruber-Baldini AL Burton L Baumgarten M Hebel JR Zimmerman SI et al. 2001 Resident contact with family and friends following nursing home admission The Gerontologist 41 589 596
   PubMed Web of Science ®Google Scholar
• Pruchno , RA and Rose , MS . 2002 . Time use by frail older people in different care settings . The Journal of Applied Gerontology , 21 : 5 – 23 .
   Web of Science ®Google Scholar
• Ransom , S . 1998 . The Eden Alternative . Texas Journal of Aging , 1 : 8 – 13 .
   Google Scholar
• Rice DP Fox PJ Max W Webber PA Lindeman DA Hauck WW et al. 1993 The economic burden of Alzheimer's disease care Health Affairs 12 164 176
   PubMed Web of Science ®Google Scholar
• Ross , MM , Rosenthal , C and Dawson , P . 1997 . Spousal caregiving in the institutional setting: Visiting . Journal of Clinical Nursing , 6 : 473 – 483 .
   PubMed Web of Science ®Google Scholar
• Rowles , GD , Concotelli , JA and High , DM . 1996 . Community integration of a rural nursing home . Journal of Applied Gerontology , 15 : 188 – 201 .
   Web of Science ®Google Scholar
• Rowles , GD and High , DM . 1996 . Individualized care: Family roles in nursing home decision-making . Journal of Gerontological Nursing , 22 ( 3 ) : 20 – 25 .
   PubMedGoogle Scholar
• Rubin , A and Shuttlesworth , GE . 1983 . Engaging families as support resources in nursing home care: Ambiguity in the subdivision of tasks . The Gerontologist , 23 ( 6 ) : 632 – 636 .
   PubMed Web of Science ®Google Scholar
• Sable , LM . 1984 . Life review therapy: An occupational therapy treatment technique with geriatric clients . Physical and Occupational Therapy in Geriatrics , 3 : 49 – 54 .
   Google Scholar
• Safford , F . 1980 . A program for families of the mentally impaired elderly . The Gerontologist , 20 : 656 – 660 .
   PubMed Web of Science ®Google Scholar
• Sancier , B . 1984 . A model for linking families to their institutionalized relatives . Social Work , 29 : 63 – 67 .
   PubMed Web of Science ®Google Scholar
• Schoenberg , NE , Amey , CH , Stoller , EP and Muldoon , SB . 2003 . Lay referral patterns involved in cardiac treatment seeking among middle-aged and older adults . The Gerontologist , 43 : 493 – 502 .
   PubMed Web of Science ®Google Scholar
• Schwarz , AN and Vogel , ME . 1990 . Nursing home staff and residents’ families role expectations . Gerontologist , 30 : 169 – 183 .
   Web of Science ®Google Scholar
• Shulman , MD and Mandel , E . 1988 . Communication training of relatives and friends of institutionalized elderly persons . The Gerontologist , 28 : 797 – 799 .
   PubMed Web of Science ®Google Scholar
• Shuttlesworth , GE , Rubin , A and Duffy , M . 1982 . Families versus institutions: Incongruent role expectations in the nursing home . The Gerontologist , 22 ( 2 ) : 200 – 208 .
   PubMed Web of Science ®Google Scholar
• Smith , KF and Bengtson , VL . 1979 . Positive consequences of institutionalization: Solidarity between elderly patients and their middle-aged children . The Gerontologist , 19 : 438 – 447 .
   PubMed Web of Science ®Google Scholar
• Spasoff RA Kraus AS Beattie EJ Holden DEW Lawson JS Rodenburg M et al. 1978 A longitudinal study of elderly residents in long-stay institutions The Gerontologist 18 281 292
   PubMed Web of Science ®Google Scholar
• Stark , AJ , Kane , RL , Kane , RA and Finch , M . 1995 . Effect on physical functioning of care in adult foster homes and nursing homes . The Gerontologist , 35 : 648 – 655 .
   PubMed Web of Science ®Google Scholar
• Stephens , MAP , Kinney , JM and Ogrocki , PK . 1991 . Stressors and well-being among caregivers to older adults with dementia: The in-home versus nursing home experience . The Gerontologist , 31 ( 2 ) : 217 – 223 .
   PubMed Web of Science ®Google Scholar
• Tabourne , CE . 1995 . The effects of a life review program on disorientation, social interaction, and self-esteem of nursing home residents . International Journal of Aging and Human Development , 41 : 251 – 266 .
   PubMed Web of Science ®Google Scholar
• Tennstedt , SL , McKinlay , JB and Sullivan , LM . 1989 . Informal care for frail elders: The role of secondary caregivers . The Gerontologist , 29 : 677 – 683 .
   PubMed Web of Science ®Google Scholar
• Thomas , J and Arcus , M . 1992 . Family life education: An analysis of the concept . Family Relations , 41 : 3 – 8 .
   Web of Science ®Google Scholar
• Thomas W 1994 The Eden Alternative: Nature, hope, and nursing homes Sherbourne NY Eden Alternative Foundation
   Google Scholar
• Thomas WH 1996 Life worth living: How someone you love can still enjoy a nursing home: The Eden Alternative in action Acton MA VanderWyk & Burnham
   Google Scholar
• Thompson D Weber JA Juozapavicius K 2001 Residents in assisted living facilities and visitation patterns B. Schwarz (Ed.) Assisted living: Sobering realities New York NY Haworth Press
   Google Scholar
• Tickle , EH and Hull , KV . 1995 . Family members’ roles in long-term care . MEDSURG Nursing , 4 : 300 – 304 .
   PubMedGoogle Scholar
• Tilse , C . 1997 . She wouldn’t dump me: The purpose and meaning of visiting a spouse in residential care . Journal of Family Studies , 3 : 196 – 208 .
   Google Scholar
• Tornatore , JB and Grant , LA . 2002 . Burden among family caregivers of persons with Alzheimer's disease in nursing homes . The Gerontologist , 42 : 497 – 506 .
   PubMed Web of Science ®Google Scholar
• Townsend C 1971 Old age: The last segregation New York Grossman Publishers
   Google Scholar
• Whitlatch , CJ and Noelker , L . 1996 . Caregiving and caring . Encyclopedia of Gerontology , 1 : 253 – 268 .
   Google Scholar
• Van Meter , MJS and Johnson , P . 1985 . Family decision making, long-term care for the elderly and the role of religious organizations: Part III: Interventions for religious professionals and organizations . Journal of Religion & Aging , 1 : 73 – 88 .
   Google Scholar
• York , JL and Caslyn , RJ . 1977 . Family involvement in nursing homes . Gerontologist , 17 : 500 – 505 .
   PubMed Web of Science ®Google Scholar
• Zarit , SH and Whitlatch , CJ . 1992 . Institutional placement: Phases of transition . The Gerontologist , 32 : 665 – 672 .
   PubMed Web of Science ®Google Scholar
• Zimmerman , S , Gruber-Baldini , AL , Hebel , R , Sloane , PD and Magaziner , J . 2002 . Nursing home facility risk factors for infection and hospitalization: Importance of registered nurse turnover, administration, and social factors . Journal of the American Geriatrics Society , 50 : 1987 – 1995 .
   PubMed Web of Science ®Google Scholar