With acknowledgments to Dr. Michael Vallis and the Behaviour Change Institute

Transcription

1 Katie Birnie, Psychology Resident, IWK Health Centre Dr. Elizabeth McLaughlin, Pediatric Health Psychology Service, IWK Health Centre Karen O Brien, Health Psychology Resident, QEII With acknowledgments to Dr. Michael Vallis and the Behaviour Change Institute Diabetes Care Program of Nova Scotia Spring Conference - April 22, 2016

2 By the end of the session, participants will: 1. Be able to describe the concept of diabetes distress 2. Identify contributors to and consequences of distress in children, adolescents, adults, and family members, including how distress relates to treatment adherence 3. Feel better prepared to assess and address distress within their scope of practice so as to support disease management and quality of life

3 If diabetes were a weight that you carried around in a knapsack on your back, how heavy would it be : A 1 lb loaf of bread? A 5 lb sack of potatoes? A 50 lb iron anvil? A 2 ton truck?

4 % of adults with diabetes with high diabetes distress (scores of on Problem Areas in Diabetes Scale) 48% Canada 53% 48% Global 31% 26% 38% 34% 17% T1 T2 Non-Med T2 Non- Insulin Med T2 Insulin Med T1 T2 Non-Med T2 Non- Insulin Med T2 Insulin Med Niccoluci et al. Diabetic Medicine. 2013;30:

5 % of adults with diabetes rating impact on at least one aspect of life as slightly to very negative 17% Type 1 (A) 83% 28% Type 2 (B) 72% Aspects of life rated Physical health Emotional well-being Financial situation Leisure activities Work or studies Relationship with friends, family, peers Rated at least one aspect of life slightly to very negative Did not rate any aspect of life slightly to very negative Niccoluci et al. Diabetic Medicine. 2013;30:

6 Disease Knowledge Health Care Provider Child Adjustment Adherence Medical Regimen Glycemic Control Family and Peers Stress Biological Factors Bennett-Johnson (1995)

7 Disease Knowledge Health Care Provider Child Adjustment Adherence Medical Regimen Glycemic Control Family and Peers Stress Biological Factors Bennett-Johnson (1995)

8 Disease Knowledge Health Care Provider Child Adjustment Adherence Medical Regimen Glycemic Control Family and Peers Stress Biological Factors Bennett-Johnson (1995)

9 The behavioural demands of self-care can be OVERWHELMING Self-testing, healthy eating, exercise/activity, insulin/medication regimen, general health care Maintaining glucose control is enormously COMPLEX Diabetes self-care demands are CONSTANT No weekends, summer vacations, retirement packages Diabetes can be UNFORGIVING Diabetes is plagued by UNCERTAINTY

10 Emotional Treatment Regimen Interpersonal

11 Kids Needles Peers / questions from others Parents Nighttime Away from parent (e.g., school) More parenting Adults Time and energy required Other immediate responsibilities (e.g., work, kids) Siblings Worry re: sibling and self Relationship with parents Adolescents Autonomy/self-management Identity / self-esteem Perceived judgment Body image/weight control Needles

12 Supportive involvement of others (e.g., parents) Family communication Decreased family conflict Diabetes management heavily influenced by family function Family problemsolving

13 Child Factors Parent-child Relationship Factors Parent Factors

14 Diagnosis Transitions Adolescence

15 Having a chronic illness Medical regimen Diagnosis Change in care providers Less family involvement Transitions Adolescence Increased disease self-management Typical adolescence (e.g., peers, parent-child conflict, autonomy, increased risk taking) Puberty / biological changes

16 Diagnosis Appointments Appointments Transitions Adolescence Appointments Appointments Appointments Appointments

17 Disease Knowledge Health Care Provider Child Adjustment Adherence Medical Regimen Glycemic Control Family and Peers Stress Biological Factors Bennett-Johnson (1995)

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20 Youth and caregiver(s) (and often more ) Goal: Rapport with both/all Avoid aligning too far with one

21 Youth s Caregiver(s) Note: Agenda for self or for child? Reflecting upon differences can be powerful Your priority right now is x, whereas your priority right now is y. No wonder you are arguing about this all the time.

22 Short term goal: Increase health

23 Longer term: Increase child s self-management

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26 16 yr old girl, T1DM, A1C over time Time 1 Time 2 Time 3 Time 4 A1C

27 16 yr old girl, T1DM, A1C over time Clinic visit Time 1 Time 2 Time 3 Time 4 A1C

28 16 yr old girl, T1DM, A1C over time Clinic visit Your A1C is very concerning! You really need to get that down! (or else!) Time 1 Time 2 Time 3 Time 4 A1C

29 16 yr old girl, T1DM, A1C over time Clinic visit Wow, you have really made a lot of progress! Keep up the great work! Time 1 Time 2 Time 3 Time 4 A1C

30 16 yr old girl, T1DM, A1C over time Clinic visit Wow, you have really made a lot of progress! Keep up the great work! Have you thought about your next steps? Time 1 Time 2 Time 3 Time 4 A1C

31 Human nature to be more influenced by short term consequences Children and adolescents even more driven by short term Goal: Make it meaningful today Extrinsic motivation Intrinsic motivation Link current behaviour to broader goals and values

32 Disease Knowledge Health Care Provider Child Adjustment Adherence Medical Regimen Glycemic Control Family and Peers Stress Biological Factors Bennett-Johnson (1995)

33 Role of Provider Role of Patient Provider Actions Goal Indications Directive Supportive Motivational Expert Uninformed help seeker Prescribe, educate, explain Information sharing Emergency Diagnosis New condition No ambivalence Follower Leader Listen without direction, Follow, Let be Allowing emotional expression Emotional experience Crisis Collaborator with expertise to share Collaborator with decision capacity Listen with empathy and direction, Inform with choices Creating/ Strengthening motivation to change Presence of ambivalence

34 Role of Provider Role of Patient Provider Actions Goal Indications Directive Supportive Motivational Expert Uninformed help seeker Prescribe, educate, explain Information sharing Emergency Diagnosis New condition No ambivalence Follower Leader Listen without direction, Follow, Let be Allowing emotional expression Emotional experience Crisis Collaborator with expertise to share Collaborator with decision capacity Listen with empathy and direction, Inform with choices Creating/ Strengthening motivation to change Presence of ambivalence

35 Role of Provider Role of Patient Provider Actions Goal Indications Directive Supportive Motivational Expert Uninformed help seeker Prescribe, educate, explain Information sharing Emergency Diagnosis New condition No ambivalence Follower Leader Listen without direction, Follow, Let be Allowing emotional expression Emotional experience Crisis Collaborator with expertise to share Collaborator with decision capacity Listen with empathy and direction, Inform with choices Creating/ Strengthening motivation to change Presence of ambivalence

36 100% 75% 50% 52% DAWN2 % of people with diabetes and health care professionals reporting their health care team/they engage in each behavior most of the time or always 73% 76% 72% N = 8,596 67% N = 4,785 44% 40% 25% 19% 26% 32% 31% 29% 20% 16% 0% Asked how diabetes affects life Asked about problems with medications Encouraged to ask questions Helped to set goals Helped to make plans to achieve goals Helped to get support from others Encouraged to go to a group or class People with diabetes (total) Health care professionals (total) 25

37 it s getting in the way!

38 In general, what percentage of your patients follow your recommendations without much difficulty? Almost all Most About half Some but less than I d like Few Less than we d like!

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41 Context Now what do you say? Provider: I recommend that you start. Patient: Well, I don t think I could do that. You see.

42 If diabetes were a weight that you carried around in a knapsack on your back, how heavy would it be : A 1 lb loaf of bread? A 5 lb sack of potatoes? A 50 lb iron anvil? A 2 ton truck?

43 Vallis, M

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45 Understand the whole person and provide a safe place to sit with the reality of diabetes: Adjustment to illness Adaptation to self-management Support for social integration Establish and support a change based relationship Manage diabetes specific psychosocial issues Psychological Insulin Resistance Fear of Hypoglycemia

46 Understand the whole person and provide a safe place to sit with the reality of diabetes: Adjustment to illness Adaptation to self-management Support for social integration Establish and support a change based relationship Manage diabetes specific psychosocial issues Psychological Insulin Resistance Fear of Hypoglycemia

47 People with diabetes are very worried about the risk of hypoglycemic events (% who mainly or fully agree) People with diabetes are very worried about the risk of hypoglycemia during the night (% who mainly or fully agree) Niccoluci et al. Diabetic Medicine. 2013;30:

48 Hypoglycemia fear scale fear Rating of extent of worry about - Not recognizing I am having a reaction Not having food, fruit or juice with me Feeling dizzy or passing urine in public Having a reaction while asleep Embarrassing myself or my friends in a social situation Having a reaction while alone Appearing drunk or stupid Losing control Having an insulin reaction Scale validated by Cox et al. Diabetes Care 1987;10:

49 Hypoglycemia fear scale fear No one being around to help me during a reaction Having a reaction while driving Making a mistake or having an accident at work Getting a bad evaluation at work because of something happening at work when my sugar is low Having seizures or convulsions Difficulty thinking clearly when responsible for others (children, etc) Developing long-term complications from frequent low blood sugar Feeling light-headed or faint Scale validated by Cox et al. Diabetes Care 1987;10:

50 Reducing Fear of Hypoglycemia Ask patient what their safe zone is o what blood sugar range do you feel comfortable with right now Do not make recommendations based on ideal Once a plan is established and patient is on board, increased testing and hypoglycemia management are Do make recommendations about lowering psychologically safe range to a medically safe range o Do this by shaping behaviour recommended o Patients often very receptive as they add to safety o Negotiate with the patient and allow empowerment

51 Most patients want to hear what their provider thinks, they just don t want to lose control Choice Negotiate choices to achieve different outcomes Motivation often increases when people have the time to realize no choice is a choice Predict If things stay the same, what is likely to happen? If it is not your job to make people change you can begin with understanding current behaviour Describe How did you get to where you are?

52 By the end of the session, participants will: 1. Be able to describe the concept of diabetes distress 2. Identify contributors to and consequences of distress in children, adolescents, adults, and family members, including how distress relates to treatment adherence 3. Feel better prepared to assess and address distress within their scope of practice so as to support disease management and quality of life

53 Is it ever challenging to parent a child with diabetes? A new 3 session group for parents/caregivers of children and youth with Type 1 Diabetes is taking place at the IWK Health Centre in May/June The group teaches psychological skills to handle the stress of parenting a child with diabetes in order to do what matters most to you. The group is intended to support better diabetes management and your overall relationship with your child. For more information, please contact Mary Lynn Lalonde at by April 28, 2016.