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 This presentation: www.fmcdonald.com

2. Goals 1.Examine short & long term broad consequences of acquired disability 2.Raise awareness of impact of acquired injury on specific aspects of psychosocial functioning of individual & family & friends 3.Increase awareness of mental health issues associated with acquired disability 4.Highlight role of Allied Health staff in identifying & addressing psychosocial functioning 5.Provide specific strategies to address issues related to psychosocial functioning

3. 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

4. Our expectations of this workshop This will be achieved by 1.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

5. Learning outcomes 1.You will be better able to appreciate the range of ways people react to AD, initially & long term 2.You will be better able to suggest what can be done to help people cope effectively with identified psychosocial problems

6. 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,travel etc. Disabilities randomly allocated … Given your acquired disability, describe your life now … how have your dreams and aspirations been affected? Discuss in small and large group...

7. 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

8. 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 Federal Office of Equal Employment Opportunity

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

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

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

12. Types of adjustment problems in AD 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

13. Why psychosocial impact of AD is an important consideration 1.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 impacts But 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

14. 2.Distress adds to existing impacts upon work, personal relations, leisure & social activities & so well-being & QoL suffers. Sets up ‘vicious cycle’ effect 3.Unmanaged psychosocial adjustment problems interfere with self-care & physical rehab. One of most significant barriers to rehab outcomes! 4.Left unattended, psychological & social effects usually worsen. Costs increase, both emotionally & financially e.g. repeated health service utilisation Why psychosocial impact of AD is an important consideration

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

16. 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

17. 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

18. Common emotional reactions to acquired disability 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

19. 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 ~ A man who has thought about the human state should be pessimistic, but the only spirit compatible with human dignity is optimism. - Coleridge

20. 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”)

21. 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

22. 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”

23. 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”

24. 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

25. 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.”)

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

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

28. 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

29. 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

30. 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

31. 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

32. 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 To be heard is profoundly healing. - Moshe Lang

33. 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

34. Risk factors for suicide 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

35. 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

36. 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

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

38. 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

39. 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

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

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

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

43. 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 Your professional & personal input

44. How can we help patients meet psychosocial needs? 3 levels: i.your professional & personal input ii.encouraging & supporting self-management iii.specific psychological strategies shown to alleviate condition & associated problems Your professional & personal input

45. Professional contributions can significantly improve patients’ psychological state: 1.Patients’ sense of control & esteem can be heightened by progress & improvements with physical therapy, exercise, speech therapy, occupational therapy & medications

46. Your professional & personal input 2.Patients benefit from attentions of concerted professional team approach e.g. primary care physicians & nurse educators Appreciate being able to discuss & manage their various concerns with appropriate range of specialists

47. First thing pt & family need to adapt is correct information about their disability, its prognosis & treatment. Can prevent or reduce significant anxiety, give direction & hope Assistance with goal-setting e.g. graphical or verbal feedback about progress towards goals because pts often don’t notice Your professional & personal input

48. Personal contributions also can significantly improve patients’ psychological state Patients do better with professionals whom they say: “generally are able to empathise & communicate a sense of how difficult things must be” “are willing to listen & my answer questions without judging me – allowing me to be more informed & knowledgeable about my illness” Your professional & personal input

49. “see me as a whole person - not a disease. They see me not just from the perspective of their profession” “enquire about common problem areas associated with my illness & so might ask ‘This illness may affect the things you feel you are capable of doing & in turn your self- esteem. How are going in that area?’ ” Your professional & personal input

50. “are willing to bring up issues I may be reluctant to – like sexuality or the anger / ‘ why me ? stuff ’ I was half-denying” “give a sense of hope to recently diagnosed pts about the promise of new therapies & treatments. They understand the importance of conveying a positive attitude” Your professional & personal input

51. “enquire about degree of support & understanding from partner, family, friends or boss” “refer to other professionals, like psychiatrists or psychologists, when they do not have the time or skills to get into things - without implying ‘you’re not coping with this as well as you should’ ” Your professional & personal input

52. Referral options – Pts with specific health problems can get info thru their doctors, local community service agencies, national organisations for particular conditions Group generated list of useful referral points Your professional & personal input

53. Psychosocial Intervention Strategies Goal 5: Specific strategies to address issues related to psychosocial functioning Encouraging & supporting self-management e.g. unhooking from therapists & linking to social network Psychological approaches ~ Loneliness is not a longing for company; it is a longing for kind. - Marilyn French

54. Encouraging & supporting self-management Patients who adopt a self- management approach, to augment professional management, fare better with their condition Subjective experiences like degree of suffering/emotional components of pain diminish

55. Self-management skills can include: Self-education. Learning as much as possible about condition. Becoming ‘expert’ at understanding & managing pain e.g. appropriate use of medication Adopting an internal locus of control attitude. Open, experimental & “I control me” not “it (pain) or they (doctors) …” attitude Extending coping/self-care skills: Balancing relaxation (mental, physical, behavioural skills) with activity (↑ pacing + ↑ movement + ↑ occupation) Encouraging & supporting self-management

56. Following slide (using RA as example) graphically illustrates important place of self-management Higher-level treatments tend to be less effective if there are problems at lower levels

58. Psychological approaches Ideally intervention programs involve interdisciplinary teams of professional – doctors & nurses; speech, physical & occupational therapists; social workers; vocational counsellors & psychologists Psychological contributions largely focus on moderating psychosocial impacts (e.g. thru enhancing participation & adherence, emotion focused strategies) with counselling techniques, behavioural & cognitive principles that have produced many useful interventions

59. Specific psychological strategies All good psychological interventions begin with assessment of full range of relevant variables (most important step in management of chronic conditions!) e.g. behavioural or functional analysis Many psychosocial measures of adaptation exist but are underutilised in rehabilitation. See handouts (‘Outcome Measures for Disability Populations’) or go to http://www.crowdbcm.net/measures/Measures_index.htm

60. Anxiety management (e.g. coping with worry strategies – catastrophe scale, stimulus control techniques, problem-solving/ ‘decatastrophising’ etc.) Coping strategies for symptoms of disease e.g. via sleep-wake cycle therapy Increasing either mastery or pleasure activities to at least one per day to counter self-esteem & mood problems (See Activity scheduling/pleasant events handout) Specific psychological strategies

61. Behavioural contracting, +’ve & –’ve reinforcement contingencies for pro- social behaviours (See handout) Environmental cueing – using prompts & reminders Pt self-monitoring of self-care activity + rewards e.g. diabetes adherence Specific psychological strategies

62. Cognitive therapy for distortions that can aggravate depression & other emotional responses to AD Stress Management (often within support group framework) especially for conditions more aggravated by stress e.g. epilepsy, pain, respiratory, gastro & musculo-skeletal conditions, etc Social Support sessions with family & friends + active listening by leaders Specific psychological strategies

63. ‘Disclosure therapy’ writing/talking about most stressful or traumatic life events Non-directive/client-centred group therapy Corrective information (many anxieties borne of misinformation) Specific psychological strategies

64. Pain-coping skills –Progressive Muscle Relaxation. Isometric Relaxation –EMG & Thermal Biofeedback + Autogenic training –Hypnosedation (e.g. in burns rx) Guided imagery e.g. for symptom control Attention re-focussing (stimuli outside body, on to activity) Specific psychological strategies

65. Dissociation (self-hypnosis/meditation. Meditation especially helpful with refractory depression) Self-encouragement via self-reward contingencies Communication skills training/assertiveness training to improve communication with health care professionals, carers, workmates Specific psychological strategies

66. Enhancing ‘self-efficacy’ (opposite of helplessness) & ‘learning’ optimism Teaching principles of activity pacing (See handout for this & other psychological approaches to pain mx) Increasing appropriate movement – walking, swimming, physio exercises via behavioural contracting & reinforcement contingencies Specific psychological strategies

67. Teaching significant others to reinforce positive pain behaviour (e.g. self- massage) & ignore negative (e.g. groaning++) Relapse prevention to preserve behavioural & attitudinal gains e.g. groups for maintenance of treatment gains Specific psychological strategies

68. ~ Patiently adjust, amend & heal. - Thomas Hardy ~A man who has thought about the human state should be pessimistic, but the only spirit compatible with human dignity is optimism. - Coleridge ~ To be heard is profoundly healing. - Moshe Lang ~ Words are, of course, the most powerful drug used by mankind. - Rudyard Kipling ~ Loneliness is not a longing for company; it is a longing for kind. - Marilyn French

69. Resources Bibliography – Doing Up Buttons. Christine Durham. Penguin (Australia). 1997. Also available as an audiobook. This is Christine Durham's extraordinary courageous and uplifting story of the realities of coming to terms with the lasting effects of head injury and grief at the loss of the person she was. Christine's recovery encompasses both deep despair and hope as she discovers that recovery has more to do with effort, acceptance, invention, love, understanding and relearning than physical healing. – Surviving Acquired Brain Injury (Australian edition). Brain Injury Association of Queensland. 2002. This book will assist people with acquired brain injury, family members, friends and professionals to understand and respond to the difficulties associated with acquired brain injury. The chapters on managing challenging behaviours will be of interest to many workshop participants

70. Resources Living a Healthy Life with Chronic Conditions: Self-Management of Heart Disease, Arthritis, Diabetes, Asthma, Bronchitis, Emphysema & Others (Paperback) by Halsted Holman, David Sobel, Diana Laurent, Virginia Gonzalez, Marian Minor, Kate Lorig (Editor) Bull Publishing. 2000. The Arthritis Foundation of Australia has rights to a Leaders Manual developed by Stanford Patient Education Research Centre Health Psychology: Biopsychosocial Interactions – An Australian Perspective. Marie L. Caltabiano, Edward L. Sarafino et al.. John Wiley & Sons Australia, Ltd.. 2002. Draws on Australian research and health promotion programs to give practical guidance on whole- person approaches to issues such as the chronic illnesses. This presentation in modified form is available from www.fmcdonald.com

71. Resources State and National websites by disability e.g. –Brain Injury Association of Qld Inc www.biaq.com.au www.biaq.com.au –Arthritis Australia; Arthritis Queensland websites QHEPS ( Qld Gov’t employees: Type particular AD into Search)