Psychosocial Issues Associated with Acquired Disabilities

1. Psychosocial Issues Associated with Acquired Disabilities Mr. Frank McDonald Psychologist Consultation-Liaison Service – The Townsville Hospital Dr. Joann Lukins Psychologist Peak Performance Psychology Pty Ltd

2. Timetable 9.00 – 9.30 Registration 9.30 - 11.00 Workshop 11.00 - 11.30 Morning tea 11.30 - 1.00 Workshop 1.00 - 1.45 Lunch 1.45 - 3.00 Workshop

3. Participant professional backgrounds • Speech Pathology • Social work • Nursing • Occupational therapy

4. Acquired brain injury Burn injuries Traumatic brain injury Cerebrovascular accident Patients with neurological disorders (eg. MS) Fractures CVA CHI Amputations Age-related functional decline Amputation Occasionally in combination with psychosocial issues (drug misuse, anxiety, depression, borderline personality disorders, post traumatic stress disorders) Background ofpatients

5. Patient Self-esteem issues Learning disabilities Loss of roles prior to acquired disability Insight into reason for admission, deficits and negative lifestyle behaviours Aggressive behaviours Challenging behaviour Sexual disinhibition and inappropriateness Motivation Patient’s support network Family finding it hard to deal with issues/lack of support Educating patient and family regarding the long term nature of the injury How relationships affect outcomes for the client Challenges in working with patients with acquired disabilities

6. Practitioner/patient relationship Understanding the whole picture Compliance with therapy program Managing grief and responding appropriately How to empower the client Help clients in initial stages of disabilities Time and resource restraints Practitioner/patient relationship Have difficulty referring on to skilled services to assist with psychosocial issues Understanding of deficits and rehabilitation Knowing the best way to handle different coping strategies Working as a team (when physical location is an issue) Challenges in working with patients with acquired disabilities

7. Your expectations of attending this workshop • Increased awareness of stages of grief and how to counsel/support people during their grieving • To try and get ideas and inspiration when working with people who have an acquired disability and associated psychosocial issues • Info on practical ideas on where to start and useful referral options for services that may be able to offer help • To gain/learn new strategies for dealing with challenging behaviour/psychosocial issues • To develop skills to address psychosocial issues • Better knowledge in above areas • To improve skills in the therapy situation • To gather resources/information to pass onto colleagues who also work in the acquired disability area

8. Preferredlearning style Teaching styles Level of preference Lecture High Small group discussion High Small group problem solving Moderate Individual work Low Role plays Low

9. Goals • Examine short & long term broad consequences of acquired disability • Raise awarenessof impact of acquired injury onspecific aspectsof psychosocial functioning of individual & family & friends • Increase awareness of mental health issues associated with acquired disability • Highlight role of Allied Health staff in identifying & addressing psychosocial functioning • Provide specific strategies to address issues related to psychosocial functioning

10. Our expectations of this workshop • Aim: improve your tertiary prevention of Acquired Disability – retard its progression & prevent further disability – using principles & practices of psychological rehabilitation

11. Our expectations of this workshop This will be achieved by • broadening your understanding of adjustment reactions to Acquired Disability - how & why some cope & others don’t 2. presenting options to help apply this understanding via psychosocial interventions that aid better adjustment - what individuals, family, friends, therapists & communities can do to help adapting & coping

12. Learning outcomes • You will be better able to appreciate the range of ways people react to AD, initially & long term • You will be better able to suggest what can be done to help people cope effectively with identified psychosocial problems

13. Form a triad …. • Share with your group some personal information about yourself, your dreams and some of your aspirations. You may refer to your career, family, relationships, education, hobbies etc. • Given your acquired disability, describe your life now … how have your dreams and aspirations been affected?

14. Prologue Goal 1: Examining the broad issues of AD Acquired Disability defined Types of Acquired Disability How they may be acquired Areas of adjustment – the bigger picture Rationale for focus on psychosocial rehabilitation

15. Acquired disability… • “An ongoing or permanent condition a person has received as a result of illness or accident . . . • a condition may be stable, requiring only initial adjustment or it may progress to a debilitating level over time”Australian FederalOffice of Equal Employment Opportunity

16. Types of disability • Intellectual or Learning • Medical • Physical • Psychiatric • Neurological • Communication

17. How disabilities may be acquired • Prenatal • Congenital • Postnatal • Adventitious • Illness • Abuse/neglect • Late onset of genetically acquired disability

18. Acquired Disability – levels of impact Spiritual/existential Psychological Social & Occupational Physical

19. Physical – being unable to cope with functional aspects of disability, loss of control of basic physical functions, pain, health changes Social – difficulty with losing activities that give sense of pleasure & identity & achievement, finding new ones & coping with changed relationships with family, friends & sexual partners, loneliness & isolation Occupational – difficulty revising educational & career plans or finding new job Emotional – high levels of denial, anxiety, grief, depression, aggression against staff Motivational – failure to comply with therapist- & self-management, loss of initiative Self-concept – inability to accept changed body image, self-esteem, levels of competence Existential/spiritual – Without sense of meaning & purpose AD can be an unbearable burden. When usual sources threatened or diminished “Why go on?” questions arise Types of adjustment problems in AD

20. Why psychosocial impact of AD is an important consideration • High prevalence of psychological distress in AD - wrought by often seemingly intolerable, devastating changes & adversities Most who treat, work & live with those with AD share humanitarian concern to prevent or reduce this distress & social impactsBut pts with psychosocial adjustment problems can distress health carers, often because pts misunderstood – can be poorly serviced as result – in turn resulting in high dissatisfaction with rehab

21. Why psychosocial impact of AD is an important consideration • Distress adds to existing impacts upon work, personal relations, leisure & social activities & so well-being & QoL suffers. Sets up ‘vicious cycle’ effect • Unmanaged psychosocial adjustment problems interfere with self-care & physical rehab. One of most significant barriers to rehab outcomes! • Left unattended, psychological & social effects usually worsen. Costs increase, both emotionally & financially e.g. repeated health service utilisation

22. ~ Patiently adjust, amend & heal. - Thomas Hardy Adjusting Goal 2: Awareness of impact of AD on specific aspects of psychosocial functioning of individual & family & friends Initial & ongoing emotional reactions to AD

23. Initial reactions • Early responses to AD usually involve mixture of anxiety & depressed mood • Worry & uncertainty about ability to cope with changes - usually high in early stages & short bursts. Diagnoses can produce shock & denial • Denial & other avoidance strategies can be useful to help absorb the shock • But, in excess, affects physical & psychological well-being e.g. not absorbing or applying info that aids recovery or prevents health problems

24. Initial reactions • Depressed mood: some say peaks shortly after diagnosis • Others say when realise full extent of their disability & after many frustrating experiences. Can take more than a year to fully emerge • Unlike anxiety which tends to appear in short-lived cycles, mood problems can be a long-term issue in AD lasting more than a year in many illnesses. Others though report cycles of despair & acceptance that can vary in length from less than 2 weeks to months

25. Confusion, denial & disbelief Anxiety, fear of losing control Panic Inadequacy & humiliation Anger & frustration, resentment Sadness & crying Guilt Helplessness, hopelessness & despair Disorganisation Fatigue & lethargy Loss of interests Withdrawal Loneliness, isolation & abandonment Common emotional reactions to acquired disability

26. ~A man who has thought about the human state should be pessimistic, but the only spirit compatible with human dignity is optimism. - Coleridge Adjusting • Goal 2: Awareness of impact of acquired injury on specific aspects of psychosocial functioning of individual & family & friends • Personal & environmental resources that determine reactions: coping skills, personalities, beliefs & assumptions (‘schemas’), social supports – Comparisons of those who do & don’t cope • Empirical & other predictors of coping • Grief v. Depression

27. Who copes?Strategies used by people who manage in the face of chronic illness • Distancing – try to detach from stress of situation (“I didn’t let it get to me. I refused to think about it too much”) • Positive focus – try to see the positives in their situation/find meaning e.g. personal growth (“I came out of the experience better than when I went in”)

28. Who copes?Strategies used by people who manage in the face of chronic illness • Seek out social support – have skills, access & receive encouragement to do so. (“The rehab people helped me find someone to talk to so I could find out more about my situation.”) • If done in ways that don’t drive people away, connecting with family, friends, organisations can result in people living longer, adjusting more positively, improving health habits (e.g. sticking to medical routines) & use health services appropriately

29. Who copes?Strategies used by people who manage in the face of chronic illness • Denial is used sparingly e.g. in early stages • Problem-solving focus (“I’ll figure out ways, or find out what others do, to deal with the specific effects of the condition”) on aspects of illness amenable to change but … • Use emotion-focused coping techniques (e.g. calming strategies) for aspects that can’t be controlled • So flexible use of coping strategies – “try to change the things I can & accept the things I can’t”

30. Who copes?Strategies used by people who manage in the face of chronic illness • Open to ‘self-management’ view of illness that complements efforts of doctors, therapists, & carers • Constructive schemas like “It’s not my fault that this happened to me. Factors outside my control lead to this illness but I do have a responsibility to help in my rehabilitation & care, as challenging as that will be. I can exert some control over the effects of this illness”

31. Who doesn’t cope?Warning signs that your pt may have trouble coping • Lots of ‘escape fantasies’ or wishful/magical thinking e.g. “I wish that the situation would go away.” • Avoidance efforts – overeating, over-drinking, excessive smoking, overuse of medication • Lots of self-blame, helplessness or anger/blaming others

32. Who doesn’t cope?Warning signs that your pt may have trouble coping • Passive acceptance (vs. actively adjusting lifestyle to make best of situation), forgetting illness, fatalistic views of illness, withdrawal from others e.g. making doctors, pharmacy & therapists centre of their world • Unable to access supportive networks in community as adjustment problems arise • Unhelpful schemas e.g. about health “No pain means no problem. No need to get blood pressure checked.”)

33. Stages in Evolution of Family Reactions to a Brain-Injured Member (Lezak, 1980)

34. Empirical predictors of poor adjustment prior to disability • Previous treatment failures • Psychopathology & personality disorders • Dependency traits • Depression • Emotional immaturity

35. Empirical predictors of poor adjustment following disability • Increased reinforcement of illness v wellness • Absence of social support from significant others • Anger or resentment • Fear of failure • Loss of self-efficacy/self-esteem • External locus of control • Fear of pain

36. Other factors that affect psychological adjustment • Pain • Medication • Isolation • Boredom • Medical complications & body image • Cognitive problems/TBI • Family/Friends/Social support • Visible vs non-visible acquired disability

37. Psychological consequences of Acquired Disability Grief response v. depression • Full clinical depression not an essential part of adjustment • Grieving generally dissipates over time & focuses on disability (e.g. lost limb) though in AD it often recurs after it dissipates. People with AD often report cycles of despair & acceptance • Depression has a self-critical focus with feelings of worthlessness, hopelessness & withdrawal from others • Someone with depression is seriously distressed & not coping

38. Phases of grief • In many forms of AD characteristics of grief, its phases & elements, should be seen as chronic & recurring - not in a time-limited, lock-step linear fashion • Can set up perilous expectations for all if grief seen too simply as stages that permanently end, sooner or later. ‘Failure’ to do so can oppress people into ‘adjusting’ &‘accepting the unacceptable’ • So consider these only as rough guide (See handout for expansion) • Avoidance • Confrontation • Re-establishment

39. To be heard is profoundly healing. - Moshe Lang Adjusting • Goal 3: Awareness of mental health issues • When coping doesn’t happen – mental health issues to be on the alert for with suggestions for management

40. Mental health issues sometimes associated with Acquired Disability • Depression • Anxiety (including PTSD) • Adjustment disorder • Substance use • Denial of deficits (anasognosia/anosodiaphoria) • Social withdrawal & amotivational states • Behavioural disorders

41. Depression Anger & aggression Alcohol & other drug abuse throughout hospitalisation Pre-morbid psychiatric illness Past suicide attempts Male Chronic pain Multiple medical problems Isolation Schizophrenia Expressions of hopelessness Family disintegration Risk factors for suicide

42. Management • If an individual expresses suicidal ideation, ensure person’s immediate safety • Obtain an urgent psychiatric consultation if person’s immediate safety at risk • Determine appropriate setting of care • Treat underlying problems such as depression, substance abuse, pain, etc

43. Management • Involve family & friends where possible • Regular observation of the person is important • Active listening by staff • Encourage expression of feelings & encourage active coping • Help with maintenance of health (e.g. hygiene, nutrition, bowel & bladder) programs while the person is in depressed state

44. Management of acute stress reactions • Referral to GP/Psychologist/Psychiatrist for assessment • Normalise reaction • Encourage person to talk • Time • Social support

45. Management of depression • Referral to GP/Psychologist/Psychiatrist for assessment • Individually managed treatment plan • Be aware of stigma & bias against people with mental health issues

46. Management of suicide • Ensure immediate safety • Psychiatric consultation if necessary • Involve others (eg. family/friends) where appropriate • Use active listening skills • Encourage feelings & encourage active coping

47. Management of PTSD • Referral to GP/Psychologist/Psychiatrist for assessment • Treatment in this areas is specialised

48. Management of Adjustment Disorder • Offer a supportive relationship • Encourage control of negative thoughts • Assist & encourage problem solving • Encourage involvement in positive activities • Promote health maintenance

49. ~ Words are, of course, the most powerful drug used by mankind. - Rudyard Kipling Psychosocial Intervention Strategies • Goal 4: Role of Allied Health staff in identifying & addressing psychosocial functioning • Your professional & personal input

50. Your professional & personal input • So, in chronic illness & AD, problem is not just disease (biomedical aspects) – but pressure to cope • Everyone with chronic illness & AD suffers psychologically & socially – degree depends on number & intensity of challenges faced