The impact of a brain tumour diagnosis for patients & family: Coping and adjustment

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1 The impact of a brain tumour diagnosis for patients & family: Coping and adjustment Carolyn Howard Senior Clinical Psychologist Cancer Services Northern Sydney Local Health District

2 Adjustment to a diagnosis Adjustment - getting used to the change in situation, adapting to the situation Includes physical, psychological, and social adaptation

3 Normal Process of Adjustment Shock, disbelief and denial Grief, sadness and depression Frustration and anger Anxiety, worry, fear and confusion Emotional reactions tend to settle within 4-6 weeks of diagnosis as patients learn to come to terms with their disease Similar process in family members and partners Can be retriggered at any point in the cancer journey 2

4 LOBES AND FUNCTIONS OF THE BRAIN (Dr. Gail Robinson) 1. Frontal Lobe Abstraction Thinking Speech Personality Regulation of Behaviour Problem solving Planning/Organisation 2. Parietal Lobe Action Attention Judgement of shape, size, texture, weight Sensation Perception Calculation Spelling 3. Occipital Lobe Vision -Colour -Shape -Motion Brainstem Alertness Blood pressure Digestion Breathing Heart rate Cerebellum Balance Muscle co-ordination Posture maintenance Higher cognitive functions 3 6. Hippocampus Episodic Memory - place - words - pictures 7. Temporal lobe Sensory integration Object recognition Memory -Short/Long -Semantic Language (naming, comprehension, reading)

5 What can be affected by a brain tumour? Executive skills Perception Memory Attention/Concentration Tolerance Information Processing Impulsivity Movement Mood/Emotion Brain Tumour Balance Personality Fatigue /Stamina Relationships Sensory Perception Insight Motivation Language Dr. Gail Robinson, Neuropsychologist UQ

6 Impact from various sources Anxiety & depression Brain Tumour Side effects Treatment

7 Grief and Loss Driving Loss/change of role in family Loss of self-identity Impact on work (loss of ability to work) Sense of increased dependency Being tied to medical treatment and appointments Fear of future

8 Mood and anxiety changes Grief and sadness Depression symptoms Anxiety symptoms Irritability, frustration, anger, impatience Guilt about impact on family Exacerbated by treatments, medications, poor sleep, chronic pain, fatigue These changes can be short term or long term

9 Uncertainty about Future Confronting and challenging Existential concerns Practical concerns (wills, insurance, finances) Foreshortened future Uncertainty about prognosis how long have I got? Grief and loss 8

10 Treatment for Anxiety and Depression Psychological intervention Cognitive Behaviour Therapy (CBT), Acceptance and Commitment Therapy (ACT) Medications such as antidepressants can be helpful, as can others.

11 Coping strategies Reduce the number of distracters in the environment. Reduce background noise by going somewhere quiet or sit away from other people. Be honest if you haven t heard all the information. Reduce internal distracters (e.g. tiredness, pain, worry, stress). Manage fatigue (good quality sleep, take breaks, pace activities).

12 Coping Strategies Accept what you can t control, focus on what you can control Seek information, ask questions, write things down Communicate what you need give others the gift of giving accept help when offered and don t be afraid to ask for help (be specific and detailed) Set aside a weekly time to discuss with your partner/carer the business of cancer (how you are both coping, what is working, what isn t) Carer take time-out from your carer role

13 Coping Strategies Maintain as normal a routine as you can (modify as needed) Be flexible with your expectations of self and others Release yourself from pressure to be positive Deal with manageable chunks Rest when you need to Meditation/relaxation CCNSW, classes, groups, home practice Exercise as appropriate (consult your doctor) Time out short breaks away, activities to look forward to

14 Coping Strategies Accept what you can t control, focus on what you can control Seek information, ask questions, write things down, keep a diary Communicate what you need give others the gift of giving accept help when offered and don t be afraid to ask for help (be specific and detailed) Set aside a weekly time to discuss with your partner/carer the business of cancer (how you are both coping, what is working, what isn t)

15 Your thinking Helpful thinking realistic, specific and does not distort situation, aids problem solving No evidence that positive thinking leads to a better outcome from treatment, but managing your emotions and thoughts leads to better quality of life Negative thoughts and images are normal everyone has them. Uncertainty what if s eg. what if this treatment doesn t work what if this treatment does work?

16 Carers Time out regular breaks from the carer responsibilities are vitally important Identify your needs and ask for help Avoid personalising the behaviour attribute it to the disease, not the person Allow yourself permission to feel grief, sadness and anxiety Self-care: exercise, sleep, healthy diet

17 Positive Thinking: If I just think positive I will beat this! Based on what we know about how cancer starts and grows, there is no reason to believe that emotions can cause cancer or help it grow No evidence that negative thoughts and emotional states affect the outcome of cancer. Also no evidence that psychological intervention or attending support groups makes people with cancer respond better to treatment or live longer. However there is much evidence that psychological intervention and support groups can enhance mood, coping and quality of life.

18 Dangers of positive thinking Unrealistic to not have a negative thought when dealing with cancer Places unnecessary and unhelpful pressure on a person dealing with cancer A person can feel guilty or blame themselves when they can t think positive. Whilst it could be a comforting belief to think that the power of the mind can control serious illness the reality is that a person can feel they have failed and blame themselves if the treatment does not work or cancer returns. Normalising the range of emotions that people experience is far more helpful