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

 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

 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”?

 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?

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

 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!!!????

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

 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*

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

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

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?”

 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.

 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.

**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

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

 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

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

 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)

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

 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”

 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