BMT CAREGIVER CHALLENGES. Presented by: Meagan Dwyer, Ph.D., Elizabeth Muenks, Ph.D. and Liliana Delano

Transcription

1 BMT CAREGIVER CHALLENGES Presented by: Meagan Dwyer, Ph.D., Elizabeth Muenks, Ph.D. and Liliana Delano

2 Cancer Caregivers 15.5 million cancer survivors (ACS & NCI 2016) 20 million by 2026 How many caregivers? 75% of families have at least one member who is a cancer survivor Caregivers provide: 75-80% of care 8.8 hours of care/day >4 years of caring over course of cancer journey (Kim, 2010, Van Ryn, 2011) 4/24/2017 2

3 What do Caregivers do? Providing unpaid care & health-related assistance Medication acquisition/dispensing Symptom management Meals/nutritional assistance Supervision, adherence Errands/bill paying Emotional Support Coordinating Care Communication with providers 4/24/2017 3

4 BMT Caregivers Long-term commitment of care Patient needs change by stage of survivorship Initial diagnosis, treatment, transplant, post-transplant Life disruption of transplant recipient and caregiver Multiple roles Fear and uncertainty Little medical training prior to caregiving Managing medications / dosages Monitoring symptoms Decreasing risk for infection Post-transplant morbidities (e.g. GVHD) 4/24/2017 4

5 BMT Caregiver Concerns Depression 3.5 x more risk for depression several years after transplant among spouses of HCT recipients (Bishop et al., 2007) Sleep Prior to HCT caregivers report significantly higher levels of anxiety, stress and insomnia (Simineau et al., 2013; Siston et al., 2001) Anxiety, less social support, greater marital dissatisfaction, loneliness, less spiritual wellness than peers (Bishop, et al., 2007) Significant caregiver physical and emotional needs (Jim et al. 2014) Social isolation Struggles in knowing how much to push (hobbies, activity, exercise) Closer relationship and also strain Significant need in learning to cope and help patient cope Formal and informal self-care can be neglected 4/24/2017 5

6 BMT Caregiver Distress Screening 4/24/2017 6

7 Red Flags Marked change in appearance Marked change in communication Marked change in behaviors Patient makes comments of concern Patient has change in complexity of need 4/24/2017 7

8 Signs of Caregiver Stress and Burnout Ignoring your own health problems/symptoms Eating poorly Overusing tobacco, alcohol or other substances Giving up exercise Losing contact with friends Bottling up feelings of anger and frustration Outbursts Feeling resentful or unreasonably annoyed Feeling anxious, distressed, sad, hopeless (two weeks) Blaming patient Feeling tired all the time Sleeping poorly 4/24/2017 8

9 Cancer Center Resources Onco-psychology service Social workers Transplant coordinators Financial Counselors Dietitians Chaplaincy Patient Advocacy Brandmeyer Resource Center BMT Mentors The University of Kansas Cancer Center s BMT Program has trained patient and caregiver mentors. 4/24/2017 9

10 4/24/ Resources

11 4/24/ Liliana s Story

12 References Bishop, M.M., Beaumont, J.L., Hahn E.L. et al. Late effects of cancer and hematopoietic stem-cell transplantation on spouses or partners compared with survivors and survivor-matched controls. Journal of Clinical Oncology 2007; 25: Jim, H.S., Quinn, G. P., Barata, A., Cases, M., Cessna, J., Gonzalez, B., Pidala, J. (2014). Caregivers Quality of Life after Blood and Marrow Transplantation: A Qualitative Study. Bone Marrow Transplantation, 49(9), Kim, Y., Baker, F., Spillers, R. L., & Wellisch, D. K. (2006). Psychological adjustment of cancer caregivers with multiple roles. Psycho Oncology, 15(9), Simoneau, T.L., Mikulich-Gilbertson, S.K., Natvig, C., Kilbourn, K., Spradley, J., Grzywa-Cobb, R., Laudenslager, M. L. (2013). Elevated Peri-transplant Distress in Caregivers of Allogeneic Blood or Marrow Transplant Patients. Psycho-Oncology, 22(9), Siston, A.K., List, M.A., Daugherty, C.K., Banik, D.M., Menke, C., Cornetta, K., et al. (2001). Psychosocial adjustment of patients and caregivers prior to allogeneic bone marrow transplantation. Bone Marrow Transplantation, 27, Van Ryn, M., Sanders, S., Kahn, K., van Houtven, C., Griffin, J. M., Martin, M.,... & Rowland, J. (2011). Objective burden, resources, and other stressors among informal cancer caregivers: a hidden quality issue?. Psycho Oncology, 20(1), /24/