Changes for the Family & Supporting Positive Coping

1. Changes for the Family & Supporting Positive Coping Dr Pamela Brown Clinical Psychologist Graham Anderson House

2. ABI = a “family affair” (Lezak, 1988) • “There is a general acceptance that not only is the family a vital ingredient in the rehabilitation process but also that family members are themselves caught up in a particularly traumatic process” (Oddy & Herbert, 2003) The Ripple Effects = Brain injury affects the whole family

3. Factors which increase family stress • Klonoff (2010): • Greater severity of b.i. • Poor neuropsychological functioning • Poor awareness • Poor impulse control & planning • Inability of patient to empathise with caregivers • Decreased family income • Willer, Flaherty & Coallier (2009): • Behavioural problems – increased impulsivity, lack of motivation, socially inappropriate behaviour & agitation • Personality changes – aggressive & disinhibited behaviour, emotional lability • Increased prevalence of psychiatric disorders – depression & anxiety

4. Family stress associated with alterations to personality, interpersonal behaviour, and cognition that occur as result of brain injury • Cognitive & behavioural changes - greatest impact on psychosocial recovery and quality of life (Jorge, 2005) • Increased levels of low mood, strain/ stress or burden and clinical levels of psychological distress (Yeates, 2009) • Primary caregivers - more symptoms of psychological distress than normal population and other medical patients (Kreutzer et al, 1994) • Literature shows that cognitive and behavioural disabilities has bigger impact on caregiver burden than physical disability (Oddy & Herbert, 2003).

5. What the Research Says – Issues that emerge • Caregiver burden is often high after brain injury 1. Becoming a carer • Not a choice, but a position which the immediate family member assumes • Oddy & Herbert (2003) “In most cases, much of the responsibility of caring for the brain injured person during their recovery falls on the family.” • This person may have a full-time job, bills to pay, children to look after = Additional responsibilities

6. 2. Ambiguous Loss • Lezak (1986; Oddy & Herbert, 2003) bereavement model of family adaptation after brain injury. Particular difficulties of this process when the person is still alive but their personality has changed. • Boss (1970’s) – Ambiguous Loss - learning to live with unresolved grief • The most difficult losses are ambiguous ones – uncertainty • “goodbye without leaving” (Boss, 2007) - Physically present but psychologically missing • Ambiguity = higher family stress, poorer family functioning • Often difficult for family members to admit they feel a sense of • loss because the person is still there and they believe • they should feel grateful for this.

7. 3. Social support & isolation • family members report increased levels of stress, social alienation, isolation and feeling overwhelmed (Kreutzer et al, 2002). • Availability of support = important factor in family adaptation. - Professional support (instrumental & emotional)- one of most commonly unmet needs within families (Kolalowsky-Hayer et al, 2001) . • Less time available for social interaction & often lose contact with pre-morbid support systems (Sander & Kreutzer,1996) • Oddy & Herbert (2003): The sense of the outside world, including extended family, not understanding the problems and difficulties • Common outcome is social isolation for both the person with ABI & their relatives, which has been shown to increase over time (Yeates, 2009)

8. 4. Role changes/ Role Transition • Changes/ loss of role for individual with b.i. • Klonoff (2010): Spouses = re-allocation of roles, loss of a reciprocal relationship (including financial decision making), changes in income, running household, caring for children • Impact of sudden role changes within the family = difficult adjustment for children (Haddon, 2012). • Older children = increased responsibility for roles previously occupied by the injured parent. Especially when younger siblings. Result = suppressing feelings and emotional responses to the trauma of the injury (Romano, 1976) • Family Systems model - impact of b.i. reverberates through all members of the family (Minuchin et al., 1975) - “the parental child” –child • displaces the other parent and performs a pseudo-parental • role within the family

9. Parental brain injury – impact on Adolescents • Loss was a dominant emerging theme • Multiple losses = loss of a parent & their role, loss of adolescent’s role as child in family • Parental responsibility - caring for the parent with ABI, providing support to the other parent and taking more responsibility for their siblings “Parentification” = expectation that child will fill parental role within family. Girls more likely to take on parentified role than boys. • E.g. instrumental tasks – such as brushing hair, ensuring they got where they needed to be, and ensuring their safety. Emotional support by reassuring them and altering their behaviour to reduce stress for the parent. No longer sharing their feelings with the parent, and made sense of this as not wanting to burden them.

10. Children whose parent has experienced a brain injury: • In past, children’s experiences overlooked • Dominant themes emerging - stories told using narrative approaches: • The need to make sense and meaning from what has happened • Difficulty understanding the changes and differences they observe • Fears about the future • Grief and loss (of the parent as they were and of family life as it was) • Myths and misconceptions about b.i., what caused the injury (frequently blame themselves) – lack of education/ support/ direct contact typically provided to children by professionals, and uninjured parent seeking to “shelter” children from this trauma (Daisley, Prangnell & Seed, in press)

11. GAH: Working with the Family • Oddy & Herbert (2003): Different levels of support provided at different stages of the rehab process • Progress updates, future rehab plans, prognosis? • Practical information/ support • Psycho-education & emotional support • Orientation to rehab model • Inclusion vs Exclusion The brain injured person is much less likely to opt out of rehabilitation if his or her family is supportive of the rehabilitation centre’s work.”

12. Graham Anderson House Opened October 2009 Working with acquired non-progressive brain injury Specialising in complex needs and/or challenging behaviour Mental health problems Drug and alcohol problems

13. GAH’s aims • Klonoff (2010): Importance of collaboration & co-operation between treating therapist(s) and family members – to maximise family’s own emotional well-being, AND ensure best possible outcome for their loved one • “Establishing a positive working alliance with the family is generally the most consequential precursor (and in some cases the only hope) for developing and maintaining the working alliance with the patient” • Successful rehabilitation depends on the whole family, not just working with the individual! • Supporting families to discuss difficult issues, increasing insight/ • awareness for all involved. Supporting positive coping

14. GAH: Working with families • contact during initial assessment and ongoing assessments • family contact during goal setting, progress, outcome and review meetings • Gaining telephone/ face-to-face feedback regarding overnight passes • key therapist/ named nurse, regular contact • Understanding Brain Injury education days • Family rehabilitation afternoon sessions • Family support groups • Family open days

15. Making sense of it all..... • Medical terminology, confusion, “foreign language”, loss of control, unempowered 1. Education/ Tutorials (Group/ 1:1 basis/ review meetings) • Usually memory, EF, behavioural issues • Klonoff (2010) – translating medical terminology into user-friendly • Reducing the psychobabble! – assessments meaningful to individual & family “e.g. “X had limited range of upper limb movement on RH side, struggled in reciprocal communication task, had cognitive rigidity, processing speed within the 5%-ile & poor performance on test of novel problem-solving..” “X may struggle to raise his right arm to put on items of clothing and should use his left hand to reach items on shelves. X has difficulties with taking turns in conversation, he may talk too much and will need you to tell him when you want to speak. X’s impairments means he may fail to see things from others perspectives (My way or the highway), it will take him time to take in information so don’t tell him too much at once, and if something unexpected happens he may struggle to know how to deal with this.” Rules of assessment feedback = parsimony, usefulness

16. An opportunity for family members to be more involved in their loved one’s rehabilitation. Involving the family in rehabilitation Families & Rehabilitation Afternoons Klonoff (2010) “It is often only when the family members can intervene and ally with the therapist(s) that the patient begins to develop any trust in the treatment process.”

17. Individual sessions with relatives Coping Frustration, overwhelmed, depressed, guilt-ridden, helpless/hopeless about future Role change/ social isolation, etc Exploring resilience factors • Resilience = multidimensional construct - Thoughts/ feelings/ behaviours • Set of skills which can be learned • “a dynamic process encompassing positive adaptation within the context of significant adversity” (Simpson & Jones, 2012)

18. Simpson & Jones (2012) • 30 severe TBI relatives, 31 spinal cord injury relatives • Higher resilience scores = more positive affect, less carer burden, than those with lower resilience scores • Family resilience independent of functional status of patient • “consistent with broader research….carer perception of the support demands, rather than the objective functional status of the injured person, is most closely associated with distress levels and experience of burden”

19. Simpson & Jones (2012)

20. Family Support Group • “And how are you?” • Rehabilitation as a journey – different stages/ obstacles along the way • Development of the group - transition • Personal stories of tragedy and triumph • The power of peer support Klonoff (2010): Empathic understanding from others who “walk in their shoes” “The sharing of humorous personal anecdotes is a positive emotional release.....Another powerful healing tool is the group’s resounding enthusiasm when family members share their personal psychological insights and accomplishments”

21. Resources Working with Headway, Momentum, Community Brain Injury Services Publications: “Where is the Mango Princess?” (Cathy Crimmins), “My Mum makes the Best Cakes”, “My Dad makes the Best Boats” (Jo Johnson) Raising awareness - Community Events: East Lothian young drivers event, “Protecting your Ted” in nurseries, road safety event – shopping outlet (Livingston) www.brainline.org – online resource with videos & handouts. Advice for family & friends, brain injury education, information on rehabilitation

22. Acknowledgements • To the service users and families who I have worked with at Graham Anderson House, for their ability to trust, to open up, and to share their painful stories at difficult times, as well as being able to show such determination, resilience and positivity at times in the face of such adversity, which has been an inspiration to others around them. • To all my colleagues who have shown that working with families and being a key figure at times in supporting family members is the role of the whole team.