Psychosocial Impacts for HAE Patients & Caregivers

2. Psychosocial Impacts for HAE Patients & Caregivers Kristy Brosz, MSW, RSW

3. Psychosocial Aspects of HAE: Caring for the Whole Person

4. Interactive Activity: Impacts/Experiences of HAE on patients and caregivers

5. Agenda 1. Patient Emotional Responses & Challenges 2. Caregiver Emotional Responses & Challenges 3. Accessing Supports Across the Country 4. Empowerment & Choices

6. Patient Emotional Responses and Challenges

7. 2. Patient Emotional Responses and Challenges:Delayed Diagnosis • “After a decade of unnecessary surgeries, hospitalizations, and being told it was all in my head, it was such a relief to be given a diagnosis.” • “I’ve been given so many wrong diagnoses in the past, how do I trust my health care team now?” • “I had never heard of HAE. When the doctor told me that is what I had I didn’t know what to expect, ask, think, feel, tell people…”

8. 2. Patient Emotional Responses and Challenges:Isolation • “No one really understands what living with HAE is like. I feel so alone.” • “Everyone keeps telling me that I don’t look sick. I don’t know how to tell them what it is like to deal with an attack.” • “I try not to let anyone see the most severe attacks. It is so embarrassing when I get incredibly swollen and I don’t want to scare other people.”

9. 2. Patient Emotional Responses and Challenges:Disruptions to Employment & School • “I didn’t know how to start the conversation about HAE with my supervisor. So I just avoided it all together. Then I ended up sick and off work and had to start a difficult conversation.” • “I’ve taken so many sick days for attacks that I’m worried I will loose my job.” • “My child’s teacher doesn’t understand why he misses so much school. They see him at school and he is fine, but they have no idea how bad it is when he has to stay home.”

10. 2. Patient Emotional Responses and Challenges:Disruptions to Family & Social Engagements • “It is hard to schedule things with friends. They don’t understand why I always end up cancelling on them because I am sick.” • “I have to be so careful. I know that if I overdo it today, I will end up with an attack and I will pay for it later. That always ends up in having to look weak and ask for help.” • “I can tell when an attack is coming and get so frustrated. As soon as I have that feeling I know that all of my plans for the next few days will have to be rescheduled.”

11. 2. Patient Emotional Responses and Challenges:Unpredictability of Attacks Over Lifetime • “I only have one question….how do I gain control over my life with HAE?” • “You never know when an attack will come. Or exactly how it will progress. It makes setting goals and following them through seem impossible. I don’t even know what is important me to anymore. ” • “Life has changed so much. I’ve given up traveling because I’m scared of what will happen if I have an attack”.

12. 2. Patient Emotional Responses and Challenges:Genetics & Life Limiting Disorders • “I am so torn about the decision to have children. I can’t imagine passing this horrible disease on to another generation.” • “I only wish my grandfather and great grandfather knew about HAE. Perhaps their deaths could have been prevented.” • “I have some very strong feelings about decisions with my health care but have no idea how to start that conversation.”

13. Caregiver Emotional Responses and Challenges

14. 3. Caregiver Emotional Responses and Challenges:Offering Support • “I want to be able to offer support. I would do anything to help out. I just don’t even know where to start and what is most helpful.” • “I don’t know much about the experience of living with HAE, but am curious to know more. I’m not certain now to learn more and respect the limits of what the patient wants to tell me.” • “I want to encourage the patient to fight, to think positive. But when I say that in the middle of an attack they get angry an tell me that I am not helping at all.”

15. 3. Caregiver Emotional Responses and Challenges:Family/Shared Decision Making & Communication • “How can I help my spouse make treatment decisions, I don’t know what an HAE attack feels like. I only know what it is like to watch it.” • “Family relationships have changed since diagnosis. Everyone is walking on eggshells all the time because everyone is trying to protect everyone else.” • “Now that we know what HAE is, we can finally deal with it. I just don’t know how we do that all together.”

16. 3. Caregiver Emotional Responses and Challenges:Self-Care for Caregivers • “It is exhausting and it breaks my heart to watch them suffer with an HAE attack from beginning to end. But it is not about me.” • “I feel guilty taking time for me. I’m not the one that is sick. Besides, what if a severe attack happens while I’m focusing on me and I’m not there to help?” • “I don’t want them to see me cry. The patient should not have to worry about protecting my feelings, they are the one that is sick.”

17. Accessing Support Across the Country

18. 4. Accessing Support Across the Country Many sources of support to access: • Tap into support systems of family and friends • Talk to your multidisciplinary health care team • Comprehensive Care Clinics (social worker/psychologist) • Hospital social workers • Referrals from GP to community mental health • Referrals from crisis lines • 211 lines in Edmonton, Calgary, Toronto • Community counseling services • HAE Canada Stop Gap Committee Social Worker Have patience!

19. Empowerment & Choices

20. 5. Empowerment & Choices Choices: • Decision is up to you to move forward with HAE diagnosis • Determine who you are outside of your health experience • Be willing to experience full range of emotions • Seek what gives your life meaning and purpose Educate: • Risk joining with others to share the range of HAE experiences • Bring individuals along with you on your journey to help educate/advocate

21. 5. Empowerment & Choices: Choosing Courage Courage may not always be what it seems! Courage is …. … to be vulnerable … to try something new … to learn home infusion … to heal your emotional self … to share your tears … to take a first step … to try a new communication style … to be your authentic self … to take a calculated risk … to have hopes and dreams … to live well today … to ________ (fill in the blank)

22. 5. Empowerment & Choices:I am more than HAE… I am… a wife a sister an advocate a life-long learner a visionary I am… scared isolated anxious But I am NOT HAE

23. 5. Empowerment & Choices: Personal Mission Statement I am… (who you are) My mission is to… (why you are here) I will accomplish this by… (how you will do it)

24. Questions?

26. Membership Matters! Sign up for Membership with HAE Canada. Forms available with Renee (outside this room!)

27. Communicating, Advocating, & Living: A Toolkit for HAE Patients Kristy Brosz, MSW, RSW Tammy Armoogan, RN

28. Agenda 1. Patient role in comprehensive care 2. Importance of partnering with health care team 3. Building Relationships 4. Maintaining Partnerships

29. Patient Role in Comprehensive Care

30. 1. Patient Role in Comprehensive Care:What is Comprehensive Care? • Definition of Comprehensive care • Main concepts for delivery of comprehensive care: • Dignity and Respect • Information Sharing • Participation • Collaboration (Johnson et al., 2008; Keene & Prentice, 1999; Keyser, 2006)

31. 1. Patient Role in Comprehensive Care:Key Players on the Team • Understanding of roles and responsibilities of the team: • Hematologist • Immunologist • Additional Physician Specialists • Nurse Coordinator • Social Worker • Psychologist • Residents/Fellows/Medical Students • Patient/Family/Caregiver

32. 1. Patient Role in Comprehensive Care:Role of Patients on the Team • Bring patient/family worldview to the team • YOU are the expert specifically on you/your family • Decision making is not done in isolation. • Decisions arise from a result of including all interests groups: • Patient • Family/caregiver/support individuals • Multidisciplinary medical team members (Johnson et al., 2008; Keene & Prentice, 1999; Keyser, 2006)

33. Importance of Partnering with Health Care Team

34. 2. Importance of Partnering with Health Care Team Effective partnering allows for: • Responsiveness to patient/family specific needs • Patient empowerment in decision making • Increased understanding of patient/caregiver experience • Increased quality of life • Identifies needed additional treatments & clinical trials • Highlights alternative perspectives for service delivery • Increased education, awareness, and advocacy • Assists in educating incoming health care professionals • Improved patient safety • Reduces health care spending (Bennett, 2010; CPSI, 2010; CMH, 2010; CHEO, 2009; Darbyshire, 1994; Family Voices, 2008; Johnson et al., 2008; Gertis et al., 2008; Keene & Prentice, 1999; Keyser, 2006; MHCS, 2007; Morris, 2008; Parent Staff, 2010; St. Jude, 2010)

35. Building Relationships

36. 3. Building Relationships: Mutual Respect in Relationships • Understanding how information best received/provided: • Self • Each member of health care team • Mutual respect when asking questions: • How the question is asked • Timing of how the question is asked/received • Content of the question (Family Voices, 2008; Johnson et al., 2008; Keene & Prentice, 1999; Keyser, 2006)

37. 3. Building Relationships: Asking Specific Questions Patient Responsibilities When Asking Questions: • Keep notebook to record questions as they arise • Acknowledge when overwhelmed/need to ask questions at a later date • Inform team how and when information is best received • Frame all questions with respectful intent • Ask for copy of important medical notes and results • Review notes from previous appointments • Prepare for appointments by making list of questions/discussion items • Be vigilant in tracking information requested by health care team • Continue asking questions until gained a satisfactory understanding • Be open to creative solutions (Hearson and Woelk, 2012; Johnson et al., 2008; Keene & Prentice, 1999)

38. 3. Building Relationships: Asking Specific Questions Patient Rights for Asking Questions: • Seeking out most appropriate professional to ask specific questions • To respectfully request for work/records to be double checked • To request both verbal and written responses to questions • To make requests regarding clarification of terminology/information • To request information multiple times at different stages in health journey • Permission to bring family/caregiver/friend to attend appointments to assist in recording or receiving information (Hearson and Woelk, 2012; Johnson et al., 2008; Keene & Prentice, 1999)

39. 3. Building Relationships: Asking Specific Questions Asking Questions: Focusing on the “3 R’s” • Risks in all medications/treatments • How to Respect all medicine and treatment • How to take Responsibility for all medicine and treatment (Family Voices, 2008; Johnson et al., 2008)

40. 3. Building Relationships: Asking Specific Questions Asking Questions: Treatment • What is this treatment for? • How does this treatment work/address my symptoms? • How does the treatment compare to other treatments available? • What are the risks and/or side effects of this treatment? • What are my responsibilities before/during/after treatment? • Can you explain your reasoning for why you think this treatment is right for me/my family member? • What treatments are currently accessible through clinical trials? • May I have a copy of specific medical notes/records?

41. Maintaining Partnerships

42. 4. Maintaining PartnershipsSelf-Management & Strong Emotions • Any health care partnership has potential for experiencing a range of strong emotions. • Anger • Frustration • Shock • Confusion • Fear • Anxious • Bewilderment • Overwhelmed (Johnson et al., 2008; Keene &Prentice, 1999)

43. 4. Maintaining PartnershipsProblem Solving Addressing Problems/Issues: • Assertive communication to raise concerns • Be specific as possible when bringing concerns forward/asking questions/clarifying situations • Focus on current issue, not on past mistakes/problems • Use “I” statements to assist with escalating emotions • Monitor feelings so others don’t get misdirected emotions • Assist team in your understanding by take down information you receive and reading it back to team • Ask for assistance from social worker or psychosocial professional (Johnson et al., 2008; Keene &Prentice, 1999)

44. 4. Maintaining PartnershipsSeeking Additional Information • Abundance of information: • Need to educate yourself, but not all information is created equal • Need to be consistent and effective consumers of information • Both lack information and too much information can be overwhelming • Set goals for care/treatment, then seek concrete & specific information • Discuss sources of information with health care team • May be necessary to open communication to seek additional information: • Within health care team • Outside of health care team (Johnson et al., 2008; Keene &Prentice, 1999)

45. Questions?

46. References (1/2) Bennett, J. (2010). Parent Coordinator, Co-chair of Family Advisory Council. Cincinnati, Cincinnati Children's Hospital Medical Center. Correspondence, January 2010. Canadian Patient Safety Institute. (2010). "Tips for Patients and Families." Retrieved from www.patientsafetyinstitute.ca/English/Pages/default.aspx. Children's Hospital of Eastern Ontario. (2009). "Family Intake Information & Patients Services Directory.“ Children's Memorial Hospital. Parentwise Program, (2010) Available at: http://www.childrensmemorial.org/parents/support/family2family.aspx. Accessed Mar 2, 2010. Darbyshire, P. (1994). Living with a sick child in hospital, the experiences of parents and nurses. London, Chapman and Hall. Family Voices (2008). Family-Centered Care Self Assessment Toolkit for Families. Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration, U.S. Department of Health and Human Services under Cooperative Agreement #U40MC00149-09-00: 12. www.familyvoices.org. Feb 22, 2010. Gertis, M., Susan Edgman-Levitan, Jennifer Daley & Thomas Delbanco (1993). Through the Patient's Eyes, Understanding and Promoting Patient Centered Care. San Francisco, Jossey-Bass.

47. References (2/2) Hearson, B, & Woelk, C. Tips for Talking with Your Health Care Providers. Canadian Viritual Hospice. Available at: www.viritualhospice.ca. Johnson, B., Marie Abraham, Jim Conway, Laurel Simmons, Susan Edgman-Levitan, Pat Sodomka, Juliette Schlucter, Dan Ford (2008). Partnering with patients and families to design a patient and family centered health care system. , Institute for Family Centered Care. Keene, N., Rachel Prentice, (1999). Your Child in the Hospital: A practical guide for parents, O'Reilly Media Inc Memorial Health Care System. (2007). "Patient and Family Centred Care Toolkit." from http://www.mhs.net/patients/pfcc/. Keyser, J. (2006). From Parents to Partners: Building a Family Centered Early Childhood Program. St. Paul, Minnesota, Red Leaf Press. Morris, B. (2008). Partnering with patients and families in patient safety: A review of the literature, Hamilton Health Sciences Patient Safety Department Parent Staff (2010). Parent Toolkit. F. C. C. Department. Stanford University, Palo Alto California, Lucile Packard Children's Hospital. http://www.lpch.org/forPatientsVisitors/PatientServices/FamilyCenteredCare/services/toolkit.html St. Jude Children's Hospital. (2010). "Patient and Family Centered Care Initiatives." from www.stjude.org.