Psychosocial Issues In Bone Marrrow Transplant Jennifer Blosser

Psychosocial Issues In Bone Marrrow Transplant Jennifer Blosser, LCSW, ACSW, C-SWHC & Susan Striano, MSW November 2011

Objectives § Identify Biopsychosocial and Spiritual issues in BMT § Understand patient and caregiver issues § Identify resources and strategies to assist § Identify components of a patient evaluation that elicits important factors predictive of coping (2011) Blosser, Jennifer

Bio-psychosocial? § The biological, psychological and social affect a person’s response to illness and treatment § The mind and body connection § Health care staff need to address the person holistically § Contrasts with a reductionist model of disease (2011) Blosser, Jennifer

Constellation § § § Genetics § Life Experience § Resilience § Temperment Family Work Health Spirituality (2011) Blosser, Jennifer

Who Cares? § § § BMT is extremely rigorous Long recovery times Side effects Late effects/Survivorship High risks of mortality (2011) Blosser, Jennifer

Practical Matters § § Patient and caregiver may relocate Need plans for home and family May be out of work Resources stretched thin § Patient pay amounts § Gas mileage § Dreaded doughnut hole (2011) Blosser, Jennifer

Spiritual § § § Chronic sorrow (Olshansky, 1962) Role loss Facing mortality Wearing out the system Sin and Salvation Search for meaning (2011) Blosser, Jennifer

Mental/Emotional § § § Anxiety and Depression Denial/Minimization Anger Fears of the unknown Loss of control Dependence Deterioration Side effects/Pain/Suffering Reaction of others Fear of relapse ENGULFMENT (2011) Blosser, Jennifer

Physical § § § Fatigue/sleep disturbance Sexual dysfunction Side effects of medicine Side effects of GVHD Where is my wellness Cognitive changes (2011) Blosser, Jennifer

Young Adults § Ill at transitional time in development § Tasks of individuation interrupted § Negotiating friendships and intimate relationships § Moving back home § Some treated first when children (2011) Blosser, Jennifer

Continuum of Coping § Emotional acceptance. . . Cognitive awareness. . . Adherence to treatment § What led them to decision § What have they read/heard about process (did they read materials) § Glass half full or half empty? (2011) Blosser, Jennifer

Risks § § § Decreased adherence Failure to thrive Increased somatization Question quality of life Failure of expectations for recovery Need to adjust to new baseline (2011) Blosser, Jennifer

Caregivers § § § § Have different experience Extra duties/roles Finances/job pressures for time off Anticipatory grief Loss of self care Bringing baggage with you (pt. , too) Overwhelmed by systems (pt. , too)(medical/insurance) § Resources dedicated to patients § Distress higher than patients (2011) Blosser, Jennifer

Special Situations § Gay, lesbian and transgender partners as caregivers § Homosexual persons with cancer § Caregivers with disabilities § Language and multicultural differences from treatment staff (2011) Blosser, Jennifer

Survivorship § BMTInfo. Net survey 2007 § Emotional/Psychiatric § Late Effects § Fatigue § Worry about family/caregivers (2011) Blosser, Jennifer

COOL! § Psychosocial support and emotional issues can be predictive of well-being following transplant (Hoodin, et al, 2006) § Hypothesis: emotional adjustment and psychosocial support can be immune modulatory (2011) Blosser, Jennifer

Case Example § Medical § History of illness experience § Past medical history § Home and family § Environmental issues § Pets § Health of family (2011) Blosser, Jennifer

Financial § Education/Employment § Status of finances § Insurance ok? § Copays § Deductables § Out of pocket maxes § Medicines (2011) Blosser, Jennifer

Substances/Mental Health/Legal § History of substance use § Patient § Family § Potential caregivers § Mental health history § Legal issues § Court hearings, financial, incarcerations, wills/advanced directives/POAs (2011) Blosser, Jennifer

Learning and Education § § § Patient and family learning style What have they received Did it meet their needs Was is understood History of learning problems or literacy issues (2011) Blosser, Jennifer

Adjustment § General impressions of mood and coping for patient and family § Relevant history § History with medical situations § Specific phobias § Coping with staff, long waits, when things go wrong § Conclusions/Needs (2011) Blosser, Jennifer

How to Cope § § § § Exercise (Wiskman&Huber, 2008) Education Nutrition Medicine Counseling Get a role! Clergy Family/community (2011) Blosser, Jennifer

§ Integrative approaches § Yoga § Visualization/guided imagery § Prayer/Meditation § Journaling § Celebrate landmarks (Stronach, 2002) § Acknowledge loss, consider gains § Value in being vs. doing (2011) Blosser, Jennifer

Community Resources § § § § Organizations related to patient diagnosis Grants/fundraising Social Security Medicaid/Medicare Grief/bereavement support Support groups Churches Family/friends/neighbors/other patients-families (2011) Blosser, Jennifer

Emotional Support § American Psychosocial Oncology Society 1 866 276 7443, apos-society. org § Cancer Info and Counseling Line 1 800 525 3777 § bmtinfonet. org § thewellnesscommunity. org § cancercare. org 1 800 813 4673 (2011) Blosser, Jennifer

Fatigue § National Comprehensive Cancer Network www. nccn. org § Oncology Nursing Society www. ons. org/outcomes/volume 1/fatigue. sht ml § American Cancer Society, National Cancer Institute, Livestrong. org § Your local cancer rehab program (2011) Blosser, Jennifer

Cognitive § § § Meds Behavioral interventions Relaxation/stress management Job retraining Treatment of underlying medical conditions (2011) Blosser, Jennifer

Caregivers § § § § Family Caregiver Alliance www. caregiver. org National Family Caregivers Association www. nfcacares. org Wellspouse Association www. wellspouse. org Caringbridge and Carepages Young Spouses www. youngcancerspouses. org www. strengthforcaring. com www. familycaregiving 101. org www. sharethecare. org (2011) Blosser, Jennifer

Young Adults § § § § § www. Planetcancer. org www. stupidcancer. com www. Camp. Dream. org www. Fertilehope. org www. preparetolive. org www. pregnantwithcancer. org www. vitaloptions. org www. cancer. gov/cancertopics/aya/resources www. cancercare. org (2011) Blosser, Jennifer

Humor § Laughter known to reduce blood pressure, increase feel-good neurochemicals and reduce subjective feelings of depression. § “I may not be totally perfect, but parts of me are excellent, ” (Ashleigh Brilliant). (2011) Blosser, Jennifer

(2011) Blosser, Jennifer

Bibliography § Anderson, KO, Giralt, SA, Mendoza, TR, Brown, JO, Neumann, JL, Mobley, GM, Wang, XS and Cleeland, CS. Symptom burden in patients undergoing autologous stem cell transplantation. Bone Marrow Transplantation (2007) 39, 759 -766. § Andorsky, DJ, Loberiza Jr, FR and Lee, SJ. Pre-transplantation physical and mental functioning is strongly associated with self reported recovery from stem cell transplantation. Bone Marrow Transplantation (2006) 37, 889 -895. § Beanlands, H, Lipton, J, Mc. Cay, E, Schimmer, A, Elliott, M, Messner, H, et al. Self-concept as a “BMT Patient, ” illness intrusiveness, and engulfment in allogeneic bone marrow transplant recipients. Journal of Psychsomatic Research (2003) 55, 419 -425. (2011) Blosser, Jennifer

§ Bishop, M. For Better and For Worse: Impact of Cancer and BMT on Family-Caregivers. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Bolte, S. The Unique Needs of Young Adult Survivors. BMT Info Net Survivorship Conference, (2008) Dallas, TX. § Boswell, HB. Hormone Replacement After Cancer Treatment. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Carlton, T. (1984). Clinical Social Work in Health Settings. New York: Springer Publishing Company. § Fife, BL, Huster, GA, Cornetta, KG, Kennedy, VN, Akard, LP, and Broun, ER. Longitudinal Study of Adaptation to the Stress of Bone Marrow Transplantation. Journal of Clinical Oncology (2000) 18 (7) 1539 -1549. (2011) Blosser, Jennifer

§ Giralt, S. Protecting Your Health Long Term. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Gielissen, MFM, Schattenberg, AVM, Verhagen, CAHHVM, Rinkes, MJ, Bremmers, MEJ and Bleijenberg, G. Experience of severe fatigue in long-term survivors of stem cell transplantation. Bone Marrow Transplantation (2007) 39, 595 -603. § Goetzmann, L, Klaghofer, R, Wagner-Huber, R, Halter, J, Boehler, A, Muellhaupt, B, et al. Psychosocial vulnerability predicts psychosocial outcome after an organ transplant: Results of a prospective study with lung, liver and bone marrow transplant patients. Journal of Psychosomatic Research (2007) 62, 93 -100. § Grant, M, Ferrell, B, Schmidt, GM, Fonbuena, P, Niland, JC, and Forman, SJ. Measurement of quality of life in bone marrow transplantation survivors. Quality of Life Research (1992) 1, 375 -384. (2011) Blosser, Jennifer

§ Hochhausen, N, Altmaier, E, Mc. Quellon, R, Davies, S, Papdopolpous, E, Carter, S & Henslee-Downey, J. Social Support, Optimism, and Self. Efficacy Predict Physical and Emotional Well-Being After Bone Marrow Transplantation. Journal of Psychosocial Oncology (2007) 25(1) 87 -101. § Hoodin, F, Uberti JP, Lynch, TJ, Steele, P, and Ratanatharathorn, V. Do negative or positive emotions differentially impact mortality after adult stem cell transplant? Bone Marrow Transplantation (2006) 38, 255 -264. § Humphreys, CT, Tallman, B, Altmaier, EM and Barnette, V. Sexual functioning in patients undergoing bone marrow transplantation: a longitudinal study. Bone Marrow Transplantation (2007) 39, 491 -496. (2011) Blosser, Jennifer

§ Jenks Kettman, J & Altmaier, E. Social support and depression among bone marrow transplant patients. Journal of Health Psychology (2008) 13(1) 39 -46. § Johnson Vicksburg, S, Duhamel, K, Smith, M, Manne, S, Winkel, G, Papadoupoulous, E, et al. Global meaning and psychological adjustment among survivors of bone marrow transplant. Psycho-oncology (2001) 10, 29 -39. § Meyers, CA. Chemobrain: Is it Real? BMT Info Net Survivorship Conference (2008) Dallas, TX. § Morales, JL. Cancer and the Law – What You Need to Know. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Northen, H. (1982). Clinical Social Work. New York: Columbia University Press. (2011) Blosser, Jennifer

§ Olshansky, S. Chronic Sorrow: A response to having a mentally defective child, Social Casework (1962) 43, 190 -193. § Pavletic, S. Chronic Graft-versus-Host Disease. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Schover, L. Sexuality After Transplant: A Workshop for Men. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Steel, JL, Nadeau, K, Olek, M & Carr, BI. Preliminary Results of an Individually Tailored Psychosocial Intervention for Patients with Advanced Hepatobiliary Carcinoma. Journal of Psychosocial Oncology (2007) 25 (3) 19 -42. (2011) Blosser, Jennifer

§ Stronach, K. (2002). “Survivors Guide for Bone Marrow and Stem Cell Transplant: What to Expect and How to Get Through it. ” 2 nd Edition. nbmt. LINK, Southfield, MI. § Sullivan, AK, Szkrumelak, N & Hoffman, LH Psychological risk factors and early complications after bone marrow transplantation in adults. Bone Marrow Transplantation (1999) 24, 1109 -1120. § Syrjala, K. Riding the Emotional Roller Coaster of Survival. BMT Info Net Survivorship Conference (2008) Dallas, TX. § Syrjala, K. Female Sexuality After Transplant: A Workshop for Women. BMT Info Net Survivorship Conference (2008) Dallas, TX. (2011) Blosser, Jennifer

§ Washington, AW. (1999) Cross-cultural issues in transplant compliance. Transplant Proceedings (1999) 31(4) sup. 1, 27 s-28 s. § Wiskemann, J and Huber, G. Physical exercise as adjuvant therapy for patients undergoing hematopoietic stem cell transplantation. Bone Marrow Transplantation (2008) 41, 321 -329 § jblosser@mcvh-vcu. edu for questions! (2011) Blosser, Jennifer