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Managing the Psychological Effects of Living with a Brain Tumour Nick Black Consultant Clinical Psychologist Winchester and Eastleigh Healthcare Trust.

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Presentation on theme: "Managing the Psychological Effects of Living with a Brain Tumour Nick Black Consultant Clinical Psychologist Winchester and Eastleigh Healthcare Trust."— Presentation transcript:

1 Managing the Psychological Effects of Living with a Brain Tumour Nick Black Consultant Clinical Psychologist Winchester and Eastleigh Healthcare Trust

2 Outline The context of psychological issues Direct effects of a brain tumour and treatments on cognitive functioning and behaviour –eg on memory/organisation Indirect effects –Emotional Adjustment –Relationships Management approaches Where to get help

3 The Journey Age, individual circumstances and characteristics, different symptoms and issues re the illness Diagnosis, treatments, experiences of being in hospital, eg fellow patients Outcome: cure to life limiting Recurrence?

4 Journey in Family Context Partner Parents Children Brothers and sisters….. Health professionals, social services, independent sector, church….

5 Who Provides Psychological Support? Starts at home All health/ social care professionals… 4 tiers of Psychological Care i.All trained staff ii.Senior clinicians with additional training and experience iii.Counsellors iv.Specialists eg clinical psychologists/ psychotherapists/ psychiatrists

6 Psychological Support A Dream? Reality?

7 Direct Effects of the Tumour Impacts on Structures of the Brain and Brain Processes Eg Jake Referred to child psychologist as not performing so well at school –Reduced performance on cognitive testing –Observation: dragging a foot when walking –Psychologist referred to neurological services

8 Direct Effects of the Tumour, Radiotherapy and Surgery Can result in residual cognitive problems –Eg Jake –Had his surgery and passed his GCSEs relying upon earlier learning –However, he still had problems in Learning and remembering Executive functioning

9 Symptoms of Brain Tumour incl. Headaches Seizures Eye problems - floating shapes or tunnel vision Changes in personality or behaviour Memory loss Difficulty with talking, reading or writing Difficulty understanding what is said to you Weakness or numbness in part of the body Sight problems or loss of vision on one side Poor balance or coordination Loss of bladder or bowel control Dizziness from CancerHelpUK website

10 Memory Problems Learning and remembering recently acquired information Distant memory (ie events before tumour) –Less likely to be affected Specific sorts of memory function –Visual or Verbal –Episodic (ie events) Vs Procedural (how to..) –Things past or future

11 Memory Inputattention/concentration working memory Storage ie Retention Output ie Retrieval immediate and delayed recognition free recall cues/prompts

12 Memory Management If you are not retaining information inside your head, you will need to store it outside –Diary/organiser –Calendar –Note book –To do lists –Post its –Electronic organiser –Mobile phone Establish structure and routines

13 Memory Aids Diaries: 1.Put in all you need to remember 2.Take it wherever you might need it 3.Do not lose it! 4.Refer to it as often as you need Calendars/ white-boards /pin boards –Locate in one place for reference

14 Dysexecutive Functioning Cognitive problems in: –Attention –Understanding complex matters –Problem solving, reasoning, planning, organisation, –Thinking flexibly or multi-tasking –Time awareness –Ability to initiate actions –Ability to monitor ones own behaviour & adjust it accordingly

15 Dysexecutive Functioning Behaviour, Emotions, Personality –Lack of insight, awareness of own emotional responses &/or those of others, unaware of consequences of own actions –Flattened affect, passivity –Rigid or concrete thinking –Impulsive behaviour; lack of control of emotions eg aggression/confrontational –Disinhibition; eg sexually inappropriate –Getting stuck on thoughts, words or actions

16 Management Structure and Routines Organisational and Planning Aids –Timetable –Activity Schedules But, we have a problem –People with executive problems may struggle to use these self-management strategies!

17 The Neuropsychologist / Clinical Psychologist Can assess the problem –With your help (patient and family) –Observation –Scan reports –Neuropsychological (cognitive) tests Before / during/ after surgery / follow-up Help you make sense of it Help make and implement a management plan Cognitive rehabilitation At different stages of the journey –Hospital, discharge home, return to work…

18 Indirect Effects of the Illness Coping with the crisis –Symptoms –Diagnosis –Treatment decisions –Surgery –Intensive care –Recovery (but how much?) –Prognosis –Uncertainty and Unknowns

19 Indirect Effects of the Illness - 2 Recovery Rehabilitation in hospital Return home Continued rehabilitation Will she/he be safe? Able to look after the children? Return to education or work…

20 Managing Mood: Direct/Indirect Anxiety Depression –Low mood –depressing –Clinical depression Emotionality Emotional lability Loss of motivation/initiative Dealing with loss: abilities/role/life

21 Adjustment to Illness Includes –Acknowledging negative emotions but not being overwhelmed by them –Maintaining a reasonable quality of life within the face of illness –Being able to live in the moment –Being open and flexible –Being realistic

22 Looking Back or Forwards? Dealing with Loss and Grief Needing to move forward Traps – Not letting go of the past – Being preoccupied with the future Focussing on dying rather than living

23 Other problems Pain Sleep Problems –Too much, too little, disturbed… Fatigue/loss of stamina –Physical, mental and emotional activity Appetite These illustrate the interconnection between the mind and body

24 Vicious Circles Effort Fatigue Reduced function

25 Anxiety Cycle (adapted from Miller 1981) produces increases leads to triggers Stressful Situation/ Stressful Thoughts Bodily Arousal Interpretation of Feelings as Anxiety Negative Thoughts Ineffectual Coping eg. avoidance

26 Emotions Involve 3 experiences What we feel - physiological What we think - cognitive What we do - behavioural



29 Managing Low Mood Structure Routines Activity Exercise Counselling/psychotherapy –Incl cognitive and behavioural therapies Medication

30 Accessing Support GP Your hospital teams Adult Services (Social Services) Carer Support groups –Princess Royal Trust for Carers – –Includes help for young carers Self Help –Books –Websites Brain tumour specific; eg our host organisations! Psychological support; eg some online programmes for managing general anxiety and depression

31 Accessing Psychological Support Counsellors –Wessex Cancer Trust – –British Association for Counsellors and Psychotherapists – Cognitive Behavioural Therapy (CBT) –BABCP (British Association for Cognitive and Behavioural Psychotherapy) – British Psychological Society –

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