Paper
Thursday, July 22, 2004
Behind Closed Doors: Accessing Caring Dyads for Home-Based Intervention Research
Ellen Mahoney, RN, DNSc and Karen Daley, RN, MS, MPH. Boston College School of Nursing, Chestnut Hill, MA, USA
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PURPOSE: Community-based research is needed to evaluate interventions to improve care and quality of life for vulnerable populations. This presentation explores the interplay of research design and population characteristics contributing to recruiting persons with dementia and their spouse caregivers for a study of interventions to decrease behavioral symptoms and increase caregiver efficacy for providing personal care at home. SPECIFIC AIM: To develop a clearer understanding of the factors that motivate and deter participation in intervention research. METHODS: Caregivers shared their perspectives on factors influencing their decision-making regarding participation. Data are from field notes from 30 couples referred to the study and telephone interviews with a sub-sample of 10. Content analysis was used to identify common themes. RESULTS: Perceived barriers to participation included: caregiver’s concern regarding the care recipient’s response; lack of congruence between study goals and caregiver priorities; privacy; not valuing proactive skill-building; minimizing health effects of dementia; and feeling overwhelmed with situational stress. Factors enabling participation included: readiness to accept help; a desire to foster research; situational desperation or crisis; concern about ability to manage in the future; trust between caregivers and researchers; and willingness to learn new skills. CONCLUSIONS: Recruitment of vulnerable populations requires a complex balance of caregiver demands and research agendas. Findings suggest fragile dyads become willing to participate in research with diverse motivations. Many are in crisis. At times, agendas of the participant dovetail poorly with research goals. IMPLICATIONS: Intervention studies conducted in the home depend heavily on the formulation of partnerships between the caregiver/care recipient dyad and the nurse interventionist. Further exploration is required of how the forces that inspire or deter participation and recruitment approaches coalesce. Since caregivers are acknowledged to carry burdens beyond their perceived capacity, we must explore approaches that reduce rather than increase the burden of participation in intervention research.
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Sigma Theta Tau International
July 22-24, 2004