UNDERSTANDING THE PSYCHOLOGICAL IMPACT OF A COLORECTAL CANCER DIAGNOSIS Dr Claire Delduca, Macmillan Clinical Psychologist Velindre Cancer Centre, Cardiff
Aims Understanding the impact of a diagnosis of colorectal cancer Recognising and assessing psychological distress What to look out for? Key trigger points Risk factors for psychological distress Promoting helpful coping strategies and quality of life Challenges and strategies for family/carers Self-care
You have found blood
CANCER
Cancer as a series of transitions From being a well person, to being an ill person and a patient From feeling you have unlimited time in this world, to knowing your time is finite From having felt fully able, to living the rest of your life with disabilities ( Brennan, 2011)
Preventative Psychological Care (Kazak 2005)
Risk Factors for Distress Universal (Low Risk) Coping skills are adequate to strong Moderately resilient to their presenting condition Good support network Targeted (Medium Risk) Coping skills are challenged and may be exceeded Pre-existing health and/or disability problems Psychosocial stressors (poverty, employment difficulties) Family problems (family conflict, divorce) Clinical (High Risk) Elevated and persistent anxiety or low mood Co-morbid child and family psychosocial difficulties Substance abuse Cognitive Impairment Existing mental health difficulties Risk issues (suicide, self-harm, POVA, child protection)
Diagnosis UNCERTAINTY!! End of Treatment Long term Follow up Patient Family Staff After the person dies
Common Coping Styles Not talking Avoidance Isolation Distraction Information seeking Checking / monitoring Going to the doctors Talking to others Reassurance seeking Change in role Beliefs about cancer and coping Suicidal thoughts Focusing on what is important Seeking meaning and understanding, e.g. Why me? Acceptance Sleep Thinking positively Predicting the worst case scenario Planning / Preparing Self-criticism Worrying Anger Crying Maintaining usual lifestyle Taking control Searching for normality Routine and structure Enjoyable activities Staying active Self-care Alcohol Drugs Withdrawal from others / activities Support groups Saying no Eating People are resilient!
How well do these strategies work? How well do they really work?
Why do we get stuck? Problem = something we don t want. Solution = figure out how to get rid of it, or avoid it. Get rid of it! Avoid it! How much control do we really have?
Don t think about the pink elephant!
Fall in love with the next person to walk through the door!
Button The Big Red Button I have a box with an amazing big red button on it. All you need to do is press the button and all your fear, sadness and pain will disappear! There is only one side effect. When you press the button, you won t care about anything or anyone anymore. Would you press the button?
Controlling the controllable Managing your worried body Relaxation Exercise Diet & hydration Toilet cards & National Key Scheme Managing your worried mind Feelings and thoughts aren t the same as facts What would you say to a friend? Coping statements: I can do this Support friends, family, health service Managing your worried actions Goals: What is most important to me right now? Routine & structure Make time for things you find enjoyable
Dropping the anchor When your mind gets caught up in an emotional storm all your thoughts and feelings are whirling around your body, dragging you here, there, and everywhere you can t do anything useful until you drop the anchor!
Doing What Matters What truly matters to me? What do I want to stand for? What sort of human being do I want to be? How do I want to behave towards: Myself? Others? The world around me?
Taking Values-Based Action What is the smallest thing I can do that will make a difference to me?
Family, Friends & Carers Barriers to support Protection from distress / worry Embarrassment, shame or guilt ( I m a burden ) Differing coping styles Lack of understanding Promoting helpful support Open communication Exploring expectations and needs Allowing difficult feelings Negotiating role changes Focus on intimacy/sensuality/sexuality Permission to ask for help Talking to children and young people
Promoting Resilience: Core Skills Understanding their perspective Seeing the person, not the symptoms Listen, validate, normalise Open Communication & Qs Thinking about the wider systems Exploring expectations and concerns Addresses worries from the outset Correct misperceptions Identifies needs Offer available support Encourage independence Control and Choice Personal resources Giving information & breaking bad news What is their understanding? What do they want to know? What do they not want to know? Ok to say I don t know! Consistent environment Routine, structure, boundaries Predictable Warnings for possible changes Self care and compassion Be kind to ourselves Doing something nice I am important too
Promoting Resilience: Helpful Questions What are their main issues? How were they coping before the meeting? Previous difficulties, successes, personal strengths, changes How are they coping currently? What s working well, what are they struggling with? What can they learn from their experiences so far? What to keep the same, what to change and how? What have other people noticed?
Summary Building resilience and self-care through preventative support Holistic, person-centred support for the person and their family Focus on independence, choice and control Be present, open up and do what matters! Promoting meaningful quality of life in the face of uncertainty
Additional Resources Acceptance and Commitment Therapy (ACT) in Health Settings Harris, R. (2011) The Reality Slap: How to find fulfilment when life hurts, Hove: Routledge. Owen, R. (2011) Facing the Storm: Using CBT, mindfulness and acceptance to build resilience when your world s falling apart, London: Robinson. Self-help, Information and Therapy resources Velindre Patient Information: (cancer specific): http://www.velindrecc.wales.nhs.uk/sitesplus/documents/1087/vip%20v3.3%20jan%202016.pdf ACT resources: https://thehappinesstrap.com/resources.php https://contextualscience.org/resources General self-help: https://www.getselfhelp.co.uk/ https://psychologytools.com/ https://www.ntw.nhs.uk/pic/selfhelp/ Practical resources Toilet card: https://www.macmillan.org.uk/aboutus/healthandsocialcareprofessionals/newsandupdates/macvoice/summer2 015/newtoiletcardandsymptomchecklist.aspx National Key Scheme: https://www.disabilityrightsuk.org/shop/radar-key Talking to children and young people Someone in my family has cancer: https://www.youtube.com/watch?v=u1erqxa_0uk Velindre Patient Information: http://nww.velindrecc.wales.nhs.uk/sitesplus/documents/1087/supporting%20children.pdf