1. Caregivers Need Care Too
Q & A with Caregivers
Mary Schueller,
MSN, RN-BC, AOCNS®, CHPN
Oncology Clinical Nurse Educator

2. Disclosures
None

3. Dedication
Kenneth J. Schueller
(1930 – 1996)

4. Caregiver Definition Merriam-Webster:
a person who provides direct care (as for children, elderly people, or the chronically ill)

5. What does the data show?

6. Unmet Supportive Care Needs
Purpose: identify the nature & range of needs, as well as levels of quality of life (QOL), of both patients & their partners
Years after diagnosis: average of 5
Received chemotherapy and/or immunomodulatory drugs, transplant
Age of patients = 62 years (range = );
Age of partners = 58.9 years (range = 25 – 80)
Majority were married; had attended a secondary school; occupation: retired; religion: Christian; ethnicity: white
Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psycho‐Oncology, 20:  

7. Anxiety & Depression Who has more? Patients or Partners?
Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psycho‐Oncology, 20:  

8. Anxiety
Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psycho‐Oncology, 20:  

9. Depression
Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psycho‐Oncology, 20:  

10. Unmet Supportive Care Needs
Statement of need
I need to know that all my doctors talk to each other to coordinate my care
I need to talk to others who have experienced myeloma
My family and/or partners need information relevant to them
I need help to reduce stress in my life
I need help to make decisions about my life in the context of uncertainty
I need help to cope with others not acknowledging the impact that myeloma had on my life
Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological well‐being and quality of life in patients living with multiple myeloma and their partners. Psycho‐Oncology, 20:  

11. Key Elements of the Caregiver Role
Direct Care
Care Coordination & Life Management
Emotional Support
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

12. Direct Care:
Monitoring & reporting or recording of treatment side effects
Administering medications
Deciding whether to call a healthcare provider
Deciding whether medicine is needed
Performing technical procedures (dressing changes, line care)
Communicating with healthcare providers
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

13. Care Coordination & Life Management
Transportation
Accompanying the patient to appointments
Communication to other family members, friends; being a gate keeper & advocate
Household maintenance, financial management, shopping, cooking
Availability for emergencies
Completing medical forms, keeping track of bills, applications for assistance
Engaging the healthcare system
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

14. Emotional Support
Balancing medical expectations while maintaining hope
Listening
Providing reassurance
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

15. Selected Problems Faced by Caregivers
Physical Health Problems
Social Problems
Emotional Problems
Financial Problems
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

16. Physical Health Problems
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 
Pain
Loss of physical strength
Sleep disorders
Fatigue & exhaustion
Changes in appetite
Sexual dysfunction & decreased libido
Exacerbation of preexisting health problems

17. Social Problems Changes in usual routines & lifestyle Social isolation
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 
Changes in usual routines & lifestyle
Social isolation
Reduced contact with outside family, friends, colleagues
Changes in work status (increased days off, distraction, loss of employment)

18. Emotional Problems Anxiety Fear Uncertainty Despair Disbelief
Depression
Sorrow & a sense of loss
Loneliness
Feelings of inadequacy
Powerlessness
Feeling a lack of control
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 

19. Financial Problems Loss of wages Difficulty in paying bills
Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 25–32. 
Loss of wages
Difficulty in paying bills
Lack of sick days
Managing health claims & bills
Premature use of retirement funds often with penalty
Inability to contribute to 401(k) with loss of employer-matched contributions

20. Key Themes - Caregivers
Coping with & managing myeloma
Current & future concerns
Fear & uncertainty about future
Helplessness, frustration
Hospital visits, “waiting for a sentence”
“Living on a knife edge”
Effects of myeloma in daily life
Daily restrictions in life
Changes with social functioning
Effects in working life
Molassiotis A, Wilson B, Cavet J, et al. Living with multiple myeloma: experiences of patients and their informal caregivers. Supportive Care In Cancer. January 2011;19(1):

21. Key Themes - Caregivers
Practical, functional & emotional coping
Myeloma being a “time bomb”
Rational need for information vs. emotional need for avoidance
Duty bound
Life resolving around patient’s needs
Covering (concealing) & protecting
Use of positive & negative coping
“Expert carer”
Molassiotis A, Wilson B, Cavet J, et al. Living with multiple myeloma: experiences of patients and their informal caregivers. Supportive Care In Cancer. January 2011;19(1):

22. Key Themes - Caregivers
Unmet needs
Limited expressed needs
Limited help from outside agencies
Seeing the person in the patient
Caregiving burden
Emotional cost of staying positive
Lack of communication about illness
Covering & protecting leading to isolation
Molassiotis A, Wilson B, Cavet J, et al. Living with multiple myeloma: experiences of patients and their informal caregivers. Supportive Care In Cancer. January 2011;19(1):

23. Caregivers Need Care Too
“It is not how much you do, but how much love you put in the doing.” Mother Teresa