1. Providing a Framework for Understanding Grief and Changes within the Family Systems that often Follow a Stroke or Brain Injury 4/12/2013 Sara Lassig, LICSW, PhD Stroke Team Coordinator & Social Work Case Manager VA Medical Center

2.  Dr. Murry Bowan (1950’s)  Individuals cannot be understood in isolation from one another—families are systems of interconnected and interdependent individuals, none of whom can be understood in isolation from the system

3.  Who decides ? (Not the medical team!)  No room for judgment  Role of friends, community, and socially important others  What about the individuals who have “no one”?

4.  Family Roles--what is expected of each family member ◦ The most basic types of roles are “father,” “mother,” “aunt,” “daughter,” “son,” “grandmother,” etc. ◦ What is expected from people in each of these roles?

5. Family Rules  how the family operates ◦ Often times these are “unspoken” ◦ Vary significantly from family to family and sometimes within families  Examples of rules

6.  Systems develop typical ways of being which are reliable and predictable.  Whether these roles & rules are adaptive (“helpful” or “good”) or not, there is a pull from the system NOT to CHANGE—but to continue functioning as things have always been.  BUT…… Guess what happens after a brain injury!!!????

7. Who’s Grieving???? Individual with a brain injury Why? Types of strokes & Areas of the brain affected “Double Whammy” Reactions 2 reasons Family members Caregivers

8.  Pseudobulbar Affect  Emotional lability, reflect crying  Rapid mood changes  Crying or laughing that doesn’t match mood  Depression **  Anxiety  Frustration  Fatigue *Based as well on area of the brain affected*

9.  Common Emotional Responses ◦ Grief Reactions ◦ Anger ◦ Frustration ◦ Fear & Anxiety  Caregiving concerns  Financial  Role Changes  Future

10.  Loss of control  Loss of self-image  Loss of Independence  Fear of stigma  Fear of abandonment  Fear of expressing anger  Fear of isolation

11. Ambiguous Loss  Physical absence with psychological presence. ◦ (Example: severe hemiparesis)  Psychological absence with physical presence. ◦ (Example: severe fluent aphasia)  Ambiguous Losses are most difficult of all losses. ◦ “Where is he/she?”

12.  Individuals who have experienced a stroke (or most any kind of acquired or traumatic brain injury) are facing significant grief reactions and significant family systems changes  Professionals in Brain Injury have roles to play in the supporting, educating, and empowering these individuals and families.

13.  Medical teams and professionals’ frameworks and methods of offering support, education, and assistance may not align with the families’ rules, established roles, expectations, and understandings.  Importance of learning who the individual or patient is and who their family/support system is.  Time is an issue for providers – HOWEVER – putting in the time to learn about these important factors on the front end, will indeed save time on the much longer path of interaction ahead.

14. **In addition to the type of stroke/brain injury and specific resulting presenting deficits***  Age & Stage of family and individual life cycle - Examples:  Multigenerational experience with illness, loss, adversity, and grief  Family belief systems and family rules  Family Roles

15.  Assessing available resources, stressors, capacities, and supports (ABC-X Model)  Assess level of disorganization to the family system (Illness Typology)

16.  Two big things that affect stress, reactions to situations, & capacity in caregiving: ◦ Demands/Resources ◦ Type of Illness ◦ ‘Stress'  the tension between an event or situation and the perceived ability to cope with or adapt to it has been developed to explore the effect on family functioning

17. Hill’s ABC-X Model X Factor Outcome Physical & Mental Health Outcomes Level of Disorganization A Factor Demands Physical Mental Emotional B Factor Resources C Factor Perceptions Hill, 1958

18.  Typology of chronic diseases that categorizes diseases by a core set of four characteristics-onset, course, outcome, and degree of incapacitation-that are particularly relevant to the adaptive functioning of family systems. (Rolland, 1994)

19. Onset – Acute versus Insidious Clear versus ambiguous Course – Progressive, remitting, stable, terminal, recovery Outcome - “how will it likely end” Degree of Incapacitation – effects on functional independence, etc

20.  Restructuring of family roles and rules versus breakdown or denial of needed restructuring  Normalization of family system changes and adaption  Acknowledgement of losses  Offers of support from “those looked to for answers”

21.  Making the individual with a brain injury and their family/support system the center of the care team and “experts” on the team ◦ After all, they know the most about the family functioning  Professionals and “experts” asking questions of the individual with a brain injury and his/her family– not having all of the answers  Education around resources for the long haul ◦ Respite, community resource possibilities, caregiver burnout education, links to support groups