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PKU and YOU

PKU and YOU. Thinking psychologically about PKU in the family. What do you mean think psychologically?. Focus on child and family life and the impact of a medical diagnosis Explore particular demands of PKU Think about dilemmas with toddlers and teens

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PKU and YOU

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  1. PKU and YOU Thinking psychologically about PKU in the family

  2. What do you mean think psychologically? • Focus on child and family life and the impact of a medical diagnosis • Explore particular demands of PKU • Think about dilemmas with toddlers and teens • How to step back, reconsider dilemmas and find ways forward • Emphasis on resources and strengths

  3. A Framework for thinking psychologically: Factors that contribute to dilemmas. Demands of condition Wider Culture School Hospital Family Child History Development

  4. Demands of a condition • Diagnosis: How the diagnosis was discussed at the outset - early relationships with the medical team • Everyday practical demands of the treatment regime and its impact on family life • Potential outcomes if regime difficult to maintain

  5. Particular demands of PKU • Because food and diet is part of so much of life you can’t have a holiday from PKU • Special food is part of the way we celebrate and mark occasions so it’s a challenge to find new ways with old customs • Sometimes outsiders underestimate the impact of a special diet • Outsiders might not understand how important the diet is to a child's health

  6. Stress and Coping: The balance of Resources and Demands * How do you recharge your batteries? Demands Dealing with NHS, medical systems Diet regimes Balancing work other family and hospital appts and monitoring What sources of support and information Opportunity for fun and relaxation

  7. Emotional Life and Relationships Thinking Feeling Relationships Who does what when how Doing

  8. Challenges of Toddlers and Teens • Why discuss these stages? • Both times of growth and great change • When and how to set limits is universal parental dilemma…often at its most acute with toddlers and teenagers.

  9. The growing toddler / nursery child: Some common issues • We get anxious at maxamaid time so I let her do ……. • I end up chasing him around the room to try and get maxamaid into him • If she gets in a real strop she won’t take her maxamaid so I try not to confront her. • We’ll do anything to get him to take his drink / her food / do a prick

  10. The adolescent: Some common Issues • We end up arguing about food • New friends don’t understand the importance of the diet, he’s finding it hard to explain. • One minute he seems up to speed with it all and the next he’s hopeless and drives me mad • I know sounds OTT but sometimes I don’t want her to go out of my sight • She just wants to be the same as her friends

  11. Where to start? • Stepping back and thinking about the situation, talking with someone who is outside • Keeping a record can be one way stepping back and looking at what has been happening.

  12. Taking a step back: To look at behaviour. • Who does what when?Keep an accurate record as a first step. • Use a weekly sheet so you can easily see patterns • Can you spot times when its going well…what’s different? • Generate some ideas about what is happening. Can you learn from when it goes well as well as when it goes wrong?

  13. Taking a step back: To look at thoughts and feelings • Oh he has so much to contend with it doesn’t feel right to be strict about X • X is too strict so I give him a little bit extra • Rewards and attention are ‘bribery’. Children should do things without a reward. • We daren’t change anything in case it gets worse • I get too upset so I ……

  14. Some common patterns • Are children getting more attention for the behaviour you don’t want? • Are children getting attention for the behaviour you do want? • Are there times in the day when things are better worse, what are the factors? • Do things go wrong when everyone is under pressure (eg everyone trying to get out of the house in the morning or at tea time when everyone gets home tired)

  15. Analysing your behaviour record • Best solutions are the ones that emerge from your problem solving • When I see families I try not to suggest things but work with families to find what works for them • Some of the ideas below have worked well for families I have seen

  16. Easier Said Than Done 1 • PKU related demands are not the only things that are non negotiable • Adults involved work to the same rules • Work to children’s strengths and wishes…use these as incentives to help them learn to do the right thing, when you have had your drink we’ll do X ( Daisy example)

  17. Easier said than done 2 • Time taken to talk and do things together as couple or as family or with friends depending on circumstances. • Time for non directed play with children (Hospital play can help) • Time for children to learn age appropriate understanding of PKU • With adolescents - talking to less involved outsider about how it feels to have PKU can help - this can be a relative friend of family or professional

  18. What helps both teens and toddlers? • Clear House rules so disputes are not always about PKU related matters • Rule of consequences - if this then that happens with no fuss. • Acknowledgement of impact of PKU • Age appropriate information about PKU • Adults have last action not last word!

  19. Acknowledgements • J S Rolland (references available on request) • Claire and family • PKU Team in Cardiff • ANY QUESTIONS?

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