Advertisement
Special communication| Volume 94, ISSUE 6, P1190-1198, June 2013

Conducting Intervention Research Among Underserved Populations: Lessons Learned and Recommendations for Researchers

Published:December 26, 2012DOI:https://doi.org/10.1016/j.apmr.2012.12.009

      Abstract

      Randomized controlled trials (RCTs) are considered the criterion standard in research design for establishing treatment efficacy. However, the rigorous and highly controlled conditions of RCTs can be difficult to attain when conducting research among individuals living with a confluence of disability, low socioeconomic status, and being a member of a racial/ethnic minority group, who may be more likely to have unstable life circumstances. Research on effective interventions for these groups is urgently needed, because evidence regarding approaches to reduce health disparities and improve health outcomes is lacking. In this methodologic article, we discuss the challenges and lessons learned in implementing the Lifestyle Redesign for Pressure Ulcer Prevention in Spinal Cord Injury study among a highly disadvantaged population. These issues are discussed in terms of strategies to enhance recruitment, retention, and intervention relevance to the target population. Recommendations for researchers seeking to conduct RCTs among socioeconomically disadvantaged, ethnically diverse populations are provided.

      Keywords

      List of abbreviations:

      LR-PUP (Lifestyle Redesign for Pressure Ulcer Prevention in Spinal Cord Injury), PUPP (Pressure Ulcer Prevention Project), RCT (randomized controlled trial), SCI (spinal cord injury), SES (socioeconomic status)
      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Archives of Physical Medicine and Rehabilitation
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • University of California San Francisco Center on Social Disparities in Health
        • Braveman P.
        • Egerter S.
        Overcoming obstacles to health.
        Princeton: Robert Wood Johnson Foundation, 2008
        • Smedley B.
        • Stith A.
        • Nelson A.
        • Institute of Medicine (U.S.) Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care
        Unequal treatment: confronting racial and ethnic disparities in health care.
        National Academies Pr, Washington (DC)2003
        • Lustig D.C.
        • Strauser D.R.
        Causal relationships between poverty and disability.
        Rehabil Couns Bull. 2007; 50: 194-202
        • Stroupe K.
        • Manheim L.
        • Evans C.
        • et al.
        Cost of treating pressure ulcers for veterans with spinal cord injury.
        Top Spinal Cord Inj Rehabil. 2011; 16: 62-73
        • Krause J.S.
        • Saunders L.L.
        • DeVivo M.J.
        Income and risk of mortality after spinal cord injury.
        Arch Phys Med Rehabil. 2011; 92: 339-345
        • Krause J.S.
        • Broderick L.E.
        • Saladin L.K.
        • Broyles J.
        Racial disparities in health outcomes after spinal cord injury: mediating effects of education and income.
        J Spinal Cord Med. 2006; 29: 17-25
        • Gary K.W.
        • Nicholls E.
        • Shamburger A.
        • Stevens L.F.
        • Arango-Lasprilla J.C.
        Do racial and ethnic minority patients fare worse after SCI?: a critical review of the literature.
        Neurorehabilitation. 2011; 29: 275-293
        • Meade M.
        • Lewis A.
        • Jackson M.
        • Hess D.
        Race, employment, and spinal cord injury.
        Arch Phys Med Rehabil. 2004; 85: 1782-1792
        • Botticello A.L.
        • Chen Y.
        • Cao Y.
        • Tulsky D.S.
        Do communities matter after rehabilitation? The effect of socioeconomic and urban stratification on well-being after spinal cord injury.
        Arch Phys Med Rehabil. 2011; 92: 464-471
        • Chen Y.
        • Devivo M.J.
        • Jackson A.B.
        Pressure ulcer prevalence in people with spinal cord injury: age-period-duration effects.
        Arch Phys Med Rehabil. 2005; 86: 1208-1213
        • Saunders L.L.
        • Krause J.S.
        • Peters B.A.
        • Reed K.S.
        The relationship of pressure ulcers, race, and socioeconomic conditions after spinal cord injury.
        J Spinal Cord Med. 2010; 33: 387-395
        • Saladin L.K.
        • Krause J.S.
        Pressure ulcer prevalence and barriers to treatment after spinal cord injury: comparisons of four groups based on race-ethnicity.
        Neurorehabilitation. 2009; 24: 57-66
        • Jackson J.
        • Carlson M.
        • Rubayi S.
        • et al.
        Qualitative study of principles pertaining to lifestyle and pressure ulcer risk in adults with spinal cord injury.
        Disabil Rehabil. 2010; 32: 567-578
        • Clark F.A.
        • Jackson J.M.
        • Scott M.D.
        • et al.
        Data-based models of how pressure ulcers develop in daily-living contexts of adults with spinal cord injury.
        Arch Phys Med Rehabil. 2006; 87: 1516-1525
        • McKinley W.O.
        • Jackson A.B.
        • Cardenas D.D.
        • DeVivo M.J.
        Long-term medical complications after traumatic spinal cord injury: a regional model systems analysis.
        Arch Phys Med Rehabil. 1999; 80: 1402-1410
        • Cardenas D.D.
        • Hoffman J.M.
        • Kirshblum S.
        • McKinley W.
        Etiology and incidence of rehospitalization after traumatic spinal cord injury: a multicenter analysis.
        Arch Phys Med Rehabil. 2004; 85: 1757-1763
        • DeVivo M.
        • Farris V.
        Causes and costs of unplanned hospitalizations among persons with spinal cord injury.
        Top Spinal Cord Inj Rehabil. 2011; 16: 53-61
        • Krause J.S.
        • Saunders L.L.
        Health, secondary conditions, and life expectancy after spinal cord injury.
        Arch Phys Med Rehabil. 2011; 92: 1770-1775
        • Charlifue S.
        • Lammertse D.
        • Adkins R.
        Aging with spinal cord injury: changes in selected health indices and life satisfaction.
        Arch Phys Med Rehabil. 2004; 85: 1848-1853
        • Saunders L.L.
        • Krause J.S.
        • Acuna J.
        Association of race, socioeconomic status, and health care access with pressure ulcers after spinal cord injury.
        Arch Phys Med Rehabil. 2012; 93: 972-977
        • Krause J.S.
        • Broderick L.
        Patterns of recurrent pressure ulcers after spinal cord injury: identification of risk and protective factors 5 or more years after onset.
        Arch Phys Med Rehabil. 2004; 85: 1257-1264
        • Fogelberg D.
        • Atkins M.
        • Blanche E.I.
        • Carlson M.
        • Clark F.
        Decisions and dilemmas in everyday life: daily use of wheelchairs by individuals with spinal cord injury and the impact on pressure ulcer risk.
        Top Spinal Cord Inj Rehabil. 2009; 15: 16-32
        • Salzberg C.
        • Byrne D.
        • Cayten C.
        • van Niewerburgh P.
        • Murphy J.
        • Viehbeck M.
        A new pressure ulcer risk assessment scale for individuals with spinal cord injury.
        Am J Phys Med Rehabil. 1996; 75: 96-104
        • Guihan M.
        • Garber S.L.
        • Bombardier C.
        • Goldstein B.
        • Holmes S.A.
        • Cao L.
        Predictors of pressure ulcer recurrence in veterans with spinal cord injury.
        J Spinal Cord Med. 2008; 31: 551-559
        • Brem H.
        • Maggi J.
        • Nierman D.
        • et al.
        High cost of stage IV pressure ulcers.
        Am J Surg. 2010; 200: 473-477
        • Javitz H.S.
        • Ward M.M.
        • Martens L.
        Major costs associated with pressure sores.
        J Wound Care. 1998; 7: 286-290
        • Yancey A.K.
        • Ortega A.N.
        • Kumanyika S.K.
        Effective recruitment and retention of minority research participants.
        Annu Rev Public Health. 2006; 27: 1-28
        • Paskett E.D.
        • Reeves K.W.
        • McLaughlin J.M.
        • et al.
        Recruitment of minority and underserved populations in the United States: the centers for population health and health disparities experience.
        Contemp Clin Trials. 2008; 29: 847-861
        • Xian H.
        Lost in translation? Language, culture and the roles of translator in cross-cultural management research.
        Qualitative Research in Organizations and Management: An International Journal. 2008; 3: 231-245
        • Pena E.
        Lost in translation: methodological considerations in cross-cultural research.
        Child Dev. 2007; 78: 1255-1264
        • Skaff M.M.
        • Chesla C.A.
        • de los Santos Mycue V.
        • Fisher L.
        Lessons in cultural competence: adapting research methodology for Latino participants.
        J Community Psychol. 2002; 30: 305-323
        • Blanche E.I.
        Alma: coping with culture, poverty, and disability.
        Am J Occup Ther. 1996; 50: 265-276
        • Wong M.D.
        • Sarkisian C.A.
        • Davis C.
        • Kinsler J.
        • Cunningham W.E.
        The association between life chaos, health care use, and health status among HIV-infected persons.
        J Gen Intern Med. 2007; 22: 1286-1291
        • Evans G.
        • Gonnella C.
        • Marcynyszyn L.
        • Gentile L.
        • Salpekar N.
        The role of chaos in poverty and children's socioemotional adjustment.
        Psychol Sci. 2005; 16: 560-565
        • Clark F.
        • Rubayi S.
        • Scott M.D.
        • Blanche E.I.
        Daily living context and pressure sores in consumers with spinal cord injury.
        U.S. Department of Education/National Institute on Disability and Rehabilitation Research, Los Angeles2000
        • Clark F.
        • Azen S.P.
        • Zemke R.
        • et al.
        Occupational therapy for independent-living older adults: a randomized controlled trial.
        JAMA. 1997; 278: 1321-1326
        • Jackson J.
        • Carlson M.
        • Mandel D.
        • Zemke R.
        • Clark F.
        Occupation in lifestyle redesign: the Well Elderly Study occupational therapy program.
        Am J Occup Ther. 1998; 52: 326-336
        • Clark F.
        • Jackson J.
        • Carlson M.
        • et al.
        Effectiveness of a lifestyle intervention in promoting the well-being of independently living older people: results of the Well Elderly 2 Randomised Controlled Trial.
        J Epidemiol Community Health. 2012; 66: 782-790
        • Miller W.R.
        • Rose G.S.
        Toward a theory of motivational interviewing.
        Am Psychol. 2009; 64: 527-537
        • Blanche E.I.
        • Fogelberg D.
        • Diaz J.
        • Carlson M.
        • Clark F.
        Manualization of occupational therapy interventions: illustrations from the pressure ulcer prevention research program.
        Am J Occup Ther. 2011; 65: 711-719
        • Bates-Jensen B.M.
        The Pressure Sore Status Tool a few thousand assessments later.
        Adv Wound Care. 1997; 10: 65-73
        • Bates-Jensen B.M.
        • Guihan M.
        • Garber S.L.
        • Chin A.S.
        • Burns S.P.
        Characteristics of recurrent pressure ulcers in veterans with spinal cord injury.
        J Spinal Cord Med. 2009; 32: 34-42