Caregivers Need Care Too Q & A with

Caregivers Need Care Too Q & A with

Caregivers Need Care Too Q & A with Caregivers Mary Schueller, MSN, RN-BC, AOCNS, CHPN Oncology Clinical Nurse Educator Disclosures None 2 Dedication

Kenneth J. Schueller (1930 1996) 3 Caregiver Definition Merriam-Webster: a person who provides direct care (as for children, elderly people, or the chronically ill) https://www.merriam-webster.com/dictionary/caregiver 4 What does the data show?

5 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 = 35 - 83); Age of partners = 58.9 years (range = 25 80) Majority were married; had attended a secondary school; occupation: retired; religion: Christian; ethnicity: white

6 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 wellbeing and quality of life in patients living with multiple myeloma and their partners. PsychoOncology, 20: 88-97. 7

Anxiety 9 8 7 6 5 4 3 2 1 0 Mean Scores Mean Scores

Patients Partners Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological wellbeing and quality of life in patients living with multiple myeloma and their partners. PsychoOncology, 20: 88-97. 8 Depression Mean Scores 5.4 5.2

5 Mean Scores 4.8 4.6 4.4 4.2 Patients Partners Molassiotis, A. , Wilson, B. , Blair, S. , Howe, T. and Cavet, J. (2011), Unmet supportive care needs, psychological wellbeing and quality of life in patients living with multiple myeloma and

their partners. PsychoOncology, 20: 88-97. 9 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 10 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. 2532.

11 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. 2532. 12 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. 2532. 13 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. 2532. 14 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. 2532. 15

Physical Health Problems Pain Loss of physical strength Sleep disorders Fatigue & exhaustion Changes in appetite Sexual dysfunction & decreased

libido Exacerbation of preexisting health problems Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 2532. 16 Social Problems 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) Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 2532. 17 Emotional Problems

Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 2532. Anxiety Fear Uncertainty

Despair Disbelief Depression Sorrow & a sense of loss Loneliness Feelings of inadequacy Powerlessness Feeling a lack of control 18 Financial Problems

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 Kurtin, Sandra, et al. Caregivers of Multiple Myeloma Survivors. Clinical Journal of Oncology Nursing, vol. 17, 2 December 2013, pp. 2532.

19 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):101-111. 20 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 patients 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):101-111. 21 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):101-111. 22 Caregivers Need Care Too It is not how much you do, but how much love you put in the doing. Mother Teresa 23

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