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WHAT FAMILY CAREGIVING RESEARCH TELLS US ABOUT COLLABORATION

WHAT FAMILY CAREGIVING RESEARCH TELLS US ABOUT COLLABORATION. Barry J. Jacobs, Psy.D. Crozer-Keystone Family Medicine Residency Program Springfield, PA www.emotionalsurvivalguide.com. Session #B5a October 6, 2012. Collaborative Family Healthcare Association 14 th Annual Conference

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WHAT FAMILY CAREGIVING RESEARCH TELLS US ABOUT COLLABORATION

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  1. WHAT FAMILY CAREGIVING RESEARCH TELLS US ABOUT COLLABORATION Barry J. Jacobs, Psy.D. Crozer-Keystone Family Medicine Residency Program Springfield, PA www.emotionalsurvivalguide.com Session #B5a October 6, 2012 Collaborative Family Healthcare Association 14th Annual Conference October 4-6, 2012 Austin, Texas U.S.A.

  2. Faculty Disclosure I have not had any relevant financial relationships during the past 12 months.

  3. Objectives Review research on family caregivers, including caregiver morbidity, impact of family caregivers on patient outcomes, and efficacy of caregiver support programs Identify family caregiving movement’s ideas about increasing family-centered care Discuss implications of caregiver research for collaborating with family members in integrated healthcare

  4. Learning Assessment A learning assessment is required for CE credit. Attention Presenters: Please incorporate audience interaction through a brief Question & Answer period during or at the conclusion of your presentation. This component MUST be done in lieu of a written pre- or post-test based on your learning objectives to satisfy accreditation requirements.

  5. TODAY’S TALK • A burgeoning demographic and cultural phenomenon • Whirlwind research tour: caregiver morbidity; family effects on patients’ clinical outcomes; components of effective caregiver support programs • Calls for team inclusion of family caregivers • Implications for collaborating with family members in integrated healthcare

  6. FAMILY CAREGIVING IN US NAC/AARP 2009 study: 65 million Americans providing care during the course of a given year (49 M for adults over age 50) 31% of all US households Most typical: 48-year-old woman taking care of a parent for about 4 years as well as working part-time

  7. US CAREGIVING (cont.) • Great heterogeneity—every family has its story (and community and culture) • 66% female; 34% male • 72% white; 13% African-American; 12% Latino • 2.4 M grandparents; 1.3 M children as caregivers • Range of emotional reactions: 31% highly stressed; 25% not at all stressed

  8. THE SAVAGES (2007)

  9. THE DESCENDANTS (2011)

  10. A SEPARATION (2011)

  11. ROBOT & FRANK (2012)

  12. CAREGIVING (cont.) • $350 B economic value (AARP, 2007) • More than 5 M Alzheimer’s patients today; by 2050, 11.5-16 M (Alzheimer’s Association)—70% cared for at home • Average life-span of Alzheimer’s pt at diagnosis: 7-8 years • Most common answer caregivers give when asked (at pt’s diagnosis) how long they think they’ll have to caregive: 2 years

  13. The Caregiving Career Aneshensel et al., 1995

  14. Chronic Stress Trajectoryin Caregiving Schulz, 2010 Placement CG/CR Trajectory InitiateIADL CG ExpandADL CG Death Psychological Appraisal Benign Distress Distress Relief Psychiatric/PhysicalMorbidity ContinuedDepression/ Reengagement Health Effects Minor Recovery Death

  15. What are the medical and psychological effects on family members of caring for loved ones with illness or disability?

  16. RESEARCH ON CAREGIVING’S EFFECTS ON CAREGIVERS Long-term Alzheimer’s dementia caregiving (Schulz & Martire, 2004) linked with: Insomnia Depression and anxiety Musculoskeletal problems (e.g., back pain) Decreased immune system functioning Decreased use of preventative medical services Increased mortality (Schulz, JAMA, 1999)

  17. CAREGIVING’S EFFECTS (cont.) • European Heart Journal (2012): Spouses of fatal and non-fatal heart attack patients have significantly higher rates of… • depression • antidepressant and benzodiazepine use • suicide • …after the medical event than spouses of patients with other life-threatening conditions

  18. How do family caregivers affect patients’ clinical outcomes?

  19. RESEARCH ON CAREGIVING & PATIENTS’ OUTCOMES • Family members commonly participate in the care of patients --Family members are present in one-third of family medicine visits (Medalie et al, 1998) The presence of family members can improve the quality of medical visits --Increases patient’s satisfaction with the physician (Wolff, Roter, 2008, 2011)

  20. PT RESEARCH (cont.) • Family members’ involvement and coping can impact patients’ clinical outcomes --Can decrease patient depression and mortality (Martire et al, 2004) --Can improve patients’ knowledge about and attitude toward diabetes (Kang et al, 2010) --Can increase survival time for Alzheimer’s patients (Brodaty, 1993)

  21. Mary Mittelman’s NYU Caregiver Intervention—increases caregiver well-being, forestalls nursing home placement of Alzheimer’s patients for nearly 2 years (2006) PT RESEARCH (cont.)

  22. What does the research tell us about designing the most efficacious family caregiver support programs?

  23. SUPPORT PROGRAM RESEARCH Rosalynn Carter Institute: Elements of evidence-based support programs: Frequent contact with helping professional over extended period of time who has specific intervention protocol of higher intensity Provision of multi-components including knowledge, skill-building, problem-solving, counseling Use of multiple means of contact including in-person, telephone, Internet

  24. What are the calls for family inclusion on the integrated healthcare team?

  25. CALLS FOR INCLUSION • AARP Public Policy Institute: “A Call to Action” (2012, Reinhard, Feinberg, Choula) • Carol Levine advised that health care professionals be incentivized to include family caregivers as partners in care. • Suzanne Mintz explained that family caregivers become care coordinators by default, because the current system does not reimburse health care professionals for care coordination.

  26. CALLS (cont.) • AARP Public Policy Institute, “Moving Toward Person- and Family-Centered Care” (Feinberg, 2012) • Assessing and addressing both the individual’s and the family caregivers’ information, care and support needs and their experience of care • Promotion of communication, shared decision making, and empowerment

  27. IMPLICATIONS FOR COLLABORATION • 1) Collaborating with family members has the potential to: • Improve patients’ satisfaction with medical visits and enhance their clinical outcomes • Decrease family caregivers’ morbidity and mortality

  28. IMPLICATIONS (cont.) • 2) Family-centered care should focus on: • Empowering family members’ abilities to play more effective care coordination roles • Provide disease- and treatment-specific information to caregivers • Devise means of ongoing team-family communication (e.g., visits, emails, portals) • Balance patients’ rights with reality of shared decision-making with family members

  29. REFERENCES • National Alliance for Caregiving/AARP study (2009): http://www.caregiving.org/pdf/research/FINAL_eConnected_Family_Caregiver_Study_Jan%202011.pdf • AARP, “Valuing the Invaluable” (2007): http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf • Alzheimer’s Association: http://www.alz.org/alzheimers_disease_facts_and_figures.asp • Schulz, R & Martire, L (2004). Family caregiving of persons with dementia: prevalence, health effects and support strategies, Am J Geri Psychiatry, May-June, 12(3), 240-9 • Schulz, R & Beach (1999). Caregiving is a risk factor for mortality: the Caregiver Health Effects Study, JAMA, Dec. 15;282(23):2215-9 • Aneshensel, CS et al (1995) Profiles in Caregiving, San Diego, CA:Academic Press

  30. REFERENCES (cont.) • Schulz, R et al (2010) Measuring the experience and perception of suffering. Gerontologist, Dec,50(6):774-84 • Fosbol, E.L (2012). Spousal depression, anxiety and suicide after myocardial infarction, European Heart Journal: http://eurheartj.oxfordjournals.org/content/early/2012/08/20/eurheartj.ehs242.abstract • Medalie, JH et al (1998). The family in family practice: Is it a reality?, J Fam Pract, 47(6):390-396Wolff, JL & Roter, DL (2008). Hidden in plain sight: Medical visit companions as a resource for vulnerable older adults, Arch Int Med, 168(13):1410-1415 • Wolff, JL & Roter, DL (2011). Family presence in routine medical visits: a meta-analytical review, Soc Sci Med, 72(6):823-31

  31. REFERENCES (cont.) • Martire, LM et al (2004). Is it beneficial to involve a family member? A meta-analysis of psychosocial interventions for chronic illness. Health Psychology, 23(6):599-611 • Brodaty, H (1993). Time until institutionalization and death in patients with dementia: Role of caregiver training and risk factors. Arch Neurol, 50(6):643-50 • Mittelman, M et al (2006). Improving caregiver well-being delays nursing home placement of patients with Alzheimer’s disease, Neurology, Nov 14;67(9):1592-9

  32. REFERENCES (cont.) • AARP Policy Institute, “A Call To Arms” (2012): http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/Spotlight-Paper-Meeting-the-Challenges-of-Family-Caregiving-AARP-ppi-ltc.pdf • AARP Policy Institute, “Moving Toward Person- and Family-Centered Care” (2012):http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/moving-toward-person-and-family-centered-care-insight-AARP-ppi-ltc.pdf

  33. RESOURCE • The Emotional Survival Guide for Caregivers by Barry J. Jacobs, Psy.D. (Guilford, 2006)

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