1 Session # G8 This We Believe: The Health Beliefs at the Heart of Patient-Family-Team Collaboration John S. Rolland, M.D., MPH, Northwestern University Feinberg School of Medicine, Chicago Center for Family Health Miyoung Yoon Hammer, Ph.D., Chair of the Department of Marriage and Family, Fuller Theological Seminary Barry J. Jacobs, Psy.D., Crozer-Keystone Family Medicine Residency Program Please insert the assigned session number (track letter, period number), i.e., A2a Please insert the TITLE of your presentation. List EACH PRESENTER who will ATTEND the CFHA Conference to make this presentation. You may acknowledge other authors who are not attending the Conference in subsequent slides. CFHA 18th Annual Conference October 13-15, 2016  Charlotte, NC U.S.A. Collaborative Family Healthcare Association 12th Annual Conference

2 Faculty Disclosure The presenters of this session currently have or have had the following relevant financial relationships (in any amount) during the past 12 months. A portion of Barry Jacobs’ salary is covered by a grant from Keystone First (AmeriHealth Caritas) insurance You must include ONE of the statements above for this session. CFHA requires that your presentation be FREE FROM COMMERCIAL BIAS. Educational materials that are a part of a continuing education activity such as slides, abstracts and handouts CANNOT contain any advertising or product‐group message. The content or format of a continuing education activity or its related materials must promote improvements or quality in health care and not a specific propriety business interest of a commercial interest. Presentations must give a balanced view of therapeutic options. Use of generic names will contribute to this impartiality. If the educational material or content includes trade names, where available trade names for products of multiple commercial entities should be used, not just trade names from a single commercial entity. Faculty must be responsible for the scientific integrity of their presentations. Any information regarding commercial products/services must be based on scientific (evidence‐based) methods generally accepted by the medical community. Collaborative Family Healthcare Association 12th Annual Conference

3 Learning Objectives At the conclusion of this session, the participant will be able to:Outline the types of beliefs about health and healing that affect the relationships among patients, family caregivers and healthcare professionals. Delineate the impact on collaborative team functioning of specific factors such as meaning-making, decision- making power, and cultural norms. Describe specific clinical means of creating better fit among the beliefs of patients, family caregivers and healthcare professionals. Include the behavioral learning objectives you identified for this session Collaborative Family Healthcare Association 12th Annual Conference

4 Bibliography / ReferenceFeinberg, L (2012). Moving Toward Person- and Family-Centered Care, a brief by AARP Public Policy Institute Jacobs, BJ (2012). Dejected Views on Family-Hating, Families & Health Blog, CFHA Levine, C & Zuckerman, C (1999). The trouble with families, Arch Int Med, 130(2) Rolland, J.S. (2017, in press). Mastering Family Challenges of Illness and Disability: An Integrative Model. New York: Guilford. Rolland, J.S. (1994). Families, Illness, & Disability: An Integrative Treatment Model. New York: Basic Books. Rolland, J.S. (2012). Mastering Family Challenges: Coping with Serious Illness and Disability. In F. Walsh (Ed.) Normal Family Processes. 4th Edition. New York: Guilford. Rolland, J.S. (1998) Beliefs and Collaboration in Illness: Evolution over time. Families, Systems & Health: The Journal of Collaborative Family HealthCare. vol 16, no 1, 7-25. Rolland, J.S. (1997) The meaning of disability and suffering: Socio-political and ethical concerns. Family Process, vol 36, no 4, Wolff, JL & Roter, DL (2008). Hidden in plain sight: Medical visit companions as a resource for vulnerable older adults, Arch Int Med, 168(13): Wolff, JL & Roter, DL (2011). Family presence in routine medical visits: a meta-analytical review, Soc Sci Med, 72(6):823-31 Wright, L. M., & Bell, J. M. (2009). Beliefs and illness: A model for healing. Calgary, Alberta, Canada: 4th Floor Press. Continuing education approval now requires that each presentation include five references within the last 5 years. Please list at least FIVE (5) references for this presentation that are no older than 5 years. Without these references, your session may NOT be approved for CE credit. Collaborative Family Healthcare Association 12th Annual Conference

5 Learning Assessment A learning assessment is required for CE credit.A question and answer period will be conducted at the end of this presentation. 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. Collaborative Family Healthcare Association 12th Annual Conference

6 “…it is not necessarily the clinical problem or illness, but rather beliefs about the clinical problem or illness that serve as the greatest source of individual and family suffering; furthermore beliefs also lie at the heart of individual and family healing.” (Wright & Bell, 2009, p 10) “Beliefs provide coherence to family life, facilitating continuity between past, present and future. They offer an approach to new and ambiguous situations, such as serious illness, and serve as cognitive maps guiding decisions and actions.” (Rolland, 2017, in press)

7 Family Systems – Illness Model

8 Time Line & Phases of Illness

9 Family Health & Illness Belief SystemsChallenge: Family create meaning for illness experience that promotes competency and mastery

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11 Levels of Meaning: Illness and HealingBIOMEDICAL EXPLANATION HUMAN EXPERIENCE MACROSYSTEM INFLUENCES Medical Field Research + Practice Experience of symptoms suffering, and healing in symbolic and narrative form Societal Belief System Economic System Healthcare/Environmental Policies Racial/Ethnic Disparities INDIVIDUAL AND MULTIGENERATIONAL FAMILY EXPERIENCES CULTURAL ORIENTATION Ethnic Diversity Religious/Spiritual/Gender Healing Beliefs and Practices Historical Context (Era)

12 Child or family with chronic illness (e.g. “child with diabetes”)Family Identity Ill child or family (e.g.“Diabetic”) vs. Child or family with chronic illness (e.g. “child with diabetes”)

13 Key Family Beliefs Multigenerational legacies about illness/lossNormative illness experience Mind-Body Interaction Mastery, Control, Acceptance Cause of Illness Course & Outcome Ethno-Cultural & Spiritual Beliefs Gender 13

14 Normative Illness ExperienceHow would “Typical” family cope & adapt? How would “Optimal” family cope & adapt? Beliefs about role of stress and wellbeing, including family dynamics, in illness (Psychosomatic interaction)

15 Beliefs about Cause of IllnessPunishment for sins Blame of Self, Family Member, or Family Unit Genetic link to a Parent Injustice (“Why me, I’ve been a good person”) Bad Luck

16 Beliefs about Illness Course & OutcomeFlexible participation over time “We will do everything we can to master cancer.” Rigid control of biology “We have to beat cancer!” “Healing” Self & System vs. Cure Illness

17 Ethno-Cultural-Spiritual BeliefsAppropriate “Sick Role” Kind & Degree of Open Communication Who is in Caregiving System Treatment and Healing Approaches Control Normative Illness Rituals (e.g. funeral, bedside)

18 Gender How does gender affect how family assigns roles (parents, siblings, extended family)? Opportunity to consider positive aspects of untried roles

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20 Fit of Beliefs Among patient and family membersFamily and healthcare providers and healthcare system Family and wider cultural values

21 Professional’s Belief SystemPersonal and Cultural Beliefs Professional Beliefs (Medicine, Social Work, Psychology) Institutional Beliefs (Hospital, Rehabilitation, Palliative Care)

22 Sample Questions What values and health beliefs guide you in life?What professional discipline values guide you as a clinician? What healthcare setting(s) values guide you? What are your attitudes about yours and the family’s ability to influence the illness course or outcome? How do you see the balance between yours and the family’s participation in the treatment process? How can important belief differences be bridged?

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24 Factors Impacting Patient-Family-Practitioner Collaboration*MEANING-MAKING *CULTURAL NORMS *DECISION-MAKING POWER

25 Navigating the FactorsPace Prioritizing Power

26 “A persistent tendency to equate families with trouble is evident in both the literature and practice of medicine.”—Levine & Zuckerman, Annals of Internal Medicine, 1999

27 Justifications for Patient-Centric Care“Family caregiver involvement undermines patient autonomy and confidentiality” “It alters the quality of the patient-professional relationship” “Working with families takes additional time”

28 Objections (cont.) “I don’t want to get in the middle of conflict between the patient and family member. I don’t want any conflict with the family member.” “The time I spend with patients’ family members is unreimbursed.“

29 Conflicts about Family Roles & Authority“Hospital visitors” vs “partners in care” (Institute for Family- and Patient-Centered Care) Extenders of healthcare team prerogatives (e.g., observers, coaches, reporters) vs full-fledged team members (e.g., participants in shared decision-making) Assumptions (without assessment) about family willingness and ability to provide care

30 “Messy and Confusing” Family involvement lacks evidence support and clinical utility Family communication as time-consuming and unreimbursed Family meetings as free-for-alls

31 Realigning Beliefs Requires training/socialization—for both providers and family members Institutional and legislative support Research -> clinical guidelines -> EMR templates Self-reflection about ambivalence

32 Family Presence in Medical VisitsFamily presence in routine medical visits (Wolff & Roter, ; 2011): Common (40%) with chronically ill seniors Caregivers facilitate information exchange—giving info about patients, asking questions, recording answers Increases length of time of visit by 5 min. Physicians provide greater biomedical info Patients more satisfied with their physicians, medical visits

33 Caregiver Advise, Record, Enable (CARE) ActPassed by 33 states: Requires identification of primary family caregiver in patient’s hospital chart Family caregiver to be notified when patient is discharged Requires in-person instructions about medical tasks that family caregiver will provide for patient at home

34 Caregiver Entry Field MICROSYSTEM

35 Levels of EMR IntegrationAccess to basic patient information Access to providers’ notes Ability to record observations Ability to comment on providers’ notes

36 Assessment “Assessing and addressing both the individual’s and the family caregivers’ information, care, and support needs and their experience of care” (Feinberg) Willing and able to perform care tasks? Coleman: DECAF, Family Activation in Transitions Tool

37 Family Involvement in Healthcare TransformationPractice-based patient and family member advisory boards Systems-based collaborations with community-based family caregiver advocacy organizations

38 Session Evaluation Please complete and return the evaluation form before leaving this session. Thank you! This should be the last slide of your presentation Collaborative Family Healthcare Association 12th Annual Conference