Article

Whatever It Takes: Informal Caregiving Dynamics in Blood and Marrow Transplantation

Loretta A. Williams

family caregiving, family caregivers
ONF 2007, 34(2), 379-387. DOI: 10.1188/07.ONF.379-387

Purpose/Objectives: To describe the dynamics of commitment, expectations, and negotiation from the perspective of caregivers of patients undergoing blood and marrow transplantation (BMT).

Research Approach: Descriptive, exploratory, qualitative methodology.

Setting: Comprehensive cancer center in a major southern U.S. city.

Participants: 40 caregivers of patients undergoing BMT.

Methodologic Approach: Story theory guided audiotaped dialogues with caregivers.

Main Research Variables: Commitment, expectations, and negotiation.

Findings: Commitment is an enduring responsibility that encourages supportive presence, inspires life changes to make the patient a priority, and leads to a self-affirming, loving connection. Expectations are clarified as expectation management, which is envisioning the future and yearning to return to normal, taking one day at a time, gauging behavior from past experiences, and reconciling treatment twists and turns. Role negotiation is appropriate pushing by a caregiver toward patient independence after getting a handle on complex care and attending to patient voice (patient preferences and wishes).

Conclusions: Commitment, expectation management, and role negotiation sustain informal caregivers in their role.

Interpretation: Acknowledging caregivers' contributions, giving focused information as needed, and providing a safe environment in which to build coherent caregiving stories can assist caregivers. Research is needed to confirm the effectiveness of interventions with caregivers and to understand patients' role in the dynamics of informal caregiving.

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    References

    Acton, G.J., & Kang, J. (2001). Interventions to reduce the burden of caregiving for an adult with dementia: A meta-analysis. Research in Nursing and Health, 24, 349-360.
    Archbold, P.G., Stewart, B.J., Greenlick, M.R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing and Health, 13, 375-384.
    Ayres, L. (2000). Narratives of family caregiving: The process of making meaning. Research in Nursing and Health, 23, 424-434.
    Beanlands, H., Horsburgh, M.E., Fox, S., Howe, A., Locking-Cusolito, H., Pare, K., et al. (2005). Caregiving by family and friends of adults receiving dialysis. Nephrology Nursing Journal, 32, 621-631.
    Boyle, D., Blodgett, L., Gnesdiloff, S., White, J., Bamford, A.M., Sheridan, M., et al. (2000). Caregiver quality of life after autologous bone marrow transplantation. Cancer Nursing, 23, 193-203.
    Braithwaite, V. (1992). Caregiving burden: Making the concept scientifically useful and policy relevant. Research on Aging, 14, 3-27.
    Bull, M.J., & Jervis, L.L. (1997). Strategies used by chronically ill older women and their caregiving daughters in managing posthospital care. Journal of Advanced Nursing, 25, 541-547.
    Clayton, J.M., Butow, P.N., & Tattersall, M.H. (2005). The needs of terminally ill cancer patients versus those of caregivers for information regarding prognosis and end-of-life issues. Cancer, 103, 1957-1664.
    Coeling, H.V., Biordi, D.L., & Theis, S.L. (2003). Negotiating dyadic identity between caregivers and care receivers. Journal of Nursing Scholarship, 35, 21-25.
    Courts, N.F., Newton, A.N., & McNeal, L.J. (2005). Husbands and wives living with multiple sclerosis. Journal of Neuroscience Nursing, 37, 20-27.
    Donnelly, J.M., Kornblith, A.B., Fleishman, S., Zuckerman, E., Raptis, G., Hudis, C.A., et al. (2000). A pilot study of interpersonal psychotherapy by telephone with cancer patients and their partners. Psycho-Oncology, 9, 44-56.
    Eilers, J.G.F. (1996). Factors that influence the impact of bone marrow transplantation for family caregivers of adult transplant recipients [UMI No. 9710331]. Dissertation Abstracts International, 57, 6176B.
    Folkman, S. (1997). Positive psychological states and coping with severe stress. Social Science and Medicine, 45, 1207-1221.
    Forssen, A.S., Carlstedt, G., & Mortberg, C.M. (2005). Compulsive sensitivity—A consequence of caring: A qualitative investigation into women carer's difficulties in limiting their labours. Health Care for Women International, 26, 652-671.
    Foster, M., & Chaboyer, W. (2003). Family carers of ICU survivors: A survey of the burden they experience. Scandinavian Journal of Caring Sciences, 17, 205-214.
    Foxall, M.J., & Gaston-Johansson, F. (1996). Burden and health outcomes of family caregivers of hospitalized bone marrow transplant patients. Journal of Advanced Nursing, 24, 915-923.
    Frey, P., Stinson, T., Siston, A., Knight, S.J., Ferdman, E., Traynor, A., et al. (2002). Lack of caregivers limits use of outpatient hematopoietic stem cell transplant program. Bone Marrow Transplantation, 30, 741-748.
    Gaston-Johansson, F., Lachica, E.M., Fall-Dickson, J.M., & Kennedy, M.J. (2004). Psychological distress, fatigue, burden of care, and quality of life in primary caregivers of patients with breast cancer undergoing autologous bone marrow transplantation. Oncology Nursing Forum, 31, 1161-1169.
    Given, B.A., Given, C.W., & Kozachik, S. (2001). Family support in advanced cancer. CA: A Cancer Journal for Clinicians, 51, 213-231.
    Given, C.W., Stommel, M., Given, B., Osuch, J., Kurtz, M.E., & Kurtz, J.C. (1993). The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychology, 12, 277-285.
    Glaser, K., Evandrou, M., & Tomassini, C. (2005). The health consequences of multiple roles at older ages in the UK. Health and Social Care in the Community, 13, 470-477.
    Grimm, P.M., Zawacki, K.L., Mock, V., Krumm, S., & Frink, B.B. (2000). Caregiver responses and needs. An ambulatory bone marrow transplant model. Cancer Practice, 8, 120-128.
    Haley, W.E. (2003). The costs of family caregiving: Implications for geriatric oncology. Critical Reviews in Oncology/Hematology.48, 151-158.
    Hayes, N., Stratton, P., & Finn, G. (1997). Introduction to part II: Theorydriven approaches to qualitative research. In N. Hayes (Ed.), Doing qualitative analysis in psychology (pp. 87-91). East Sussex, United Kingdom: Psychology Press.
    Horowitz, M.M., Loberiza, F.R., Bredeson, C.N., Rizzo, J.D., & Nugent, M.L. (2001). Transplant registries: Guiding clinical decisions and improving outcomes. Oncology, 15, 649-659.
    Keogh, F., O'Riordan, J., McNamara, C., Duggan, C., & McCann, S.R. (1998). Psychosocial adaptation of patients and families following bone marrow transplantation: A prospective, longitudinal study. Bone Marrow Transplantation, 22, 905-911.
    Kylma, J., Vehvilainen-Julkunen, K., & Lahdevirta, J. (2001). Dynamically fluctuating hope, despair and hopelessness along the HIV/AIDS continuum as described by caregivers in voluntary organizations in Finland. Issues in Mental Health Nursing, 22, 353-377.
    Langer, S., Abrams, J., & Syrjala, K. (2003). Caregiver and patient marital satisfaction and affect following hematopoietic stem cell transplantation: A prospective, longitudinal investigation. Psycho-Oncology, 12, 239-253.
    Liehr, P., & Smith, M.J. (2000, Summer). Using story theory to guide nursing practice. International Journal for Human Caring, 4, 13-18.
    Lincoln, Y.S., & Guba, E.G. (1985). Naturalistic inquiry. Beverly Hills, CA: Sage.
    Loberiza, F., Jr. (2003). Summary slides 2003. IBMTR/ABMTR Newsletter, 10(1), 1, 7-10.
    LoboPrabhu, S., Molinari, V., Arlinghaus, K., Barr, E., & Lomax, J. (2005). Spouses of patients with dementia: How do they stay together "till death do us part"? Journal of Gerontological Social Work, 44, 161-174.
    Meehan, K.R., Fitzmaurice, T., Root, L., Kimtis, E., Patchett, L., & Hill, J. (2006). The financial requirements and time commitments of caregivers for autologous stem cell transplant recipients. Journal of Supportive Oncology, 4, 187-190.
    Miller, B., Townsend, A., Carpenter, E., Montgomery, R.V., Stull, D., & Young, R.F. (2001). Social support and caregiver distress: A replication analysis. Journals of Gerontology, Series B, Psychological Sciences and Social Sciences, 56, S249-S256.
    Mishel, M.H., Padilla, G., Grant, M., & Sorenson, D.S. (1991). Uncertainty in illness theory: A replication of the mediating effects of mastery and coping. Nursing Research, 40, 236-240.
    Musil, C.M., Morris, D.L., Warner, C.B., & Saeid, H. (2003). Issues in caregivers' stress and providers' support. Research on Aging, 25, 505-526.
    National Family Caregivers Association. (2003). Prevalence and economic value of family caregiving: State-by-state analysis. Retrieved November 6, 2004, from http://www.nfcacares.org/pdfs/state_stats.pdf
    Parse, R.R. (2001). The qualitative descriptive method. In Qualitative inquiry: The path of sciencing (pp. 57-60). Sudbury, MA: Jones and Bartlett.
    Parse, R.R., Coyne, A.B., & Smith, M.J. (1985). The descriptive method. In Nursing research: Qualitative methods (pp. 91-94). Bowie, MD: Brady Communications.
    Phillips, L.R., Brewer, B.B., & Torres de Ardon, E. (2001). The Elder Image Scale: A method for indexing history and emotion in family caregiving. Journal of Nursing Measurement, 9, 23-47.
    Rexilius, S.J., Mundt, C.A., Erickson Megel, M., & Agrawal, S. (2002). Therapeutic effects of massage therapy and Healing Touch on caregivers of patients undergoing autologous hematopoietic stem cell transplant. Oncology Nursing Forum, 29, E35-E44. Retrieved February 5, 2007, from http://www.ons.org/publications/journals/ONF/Volume29/Issue3/pdf/35.pdf
    Schoenfelder, D.P., Swanson, E.A., Specht, J.K., Maas, M., & Johnson, M. (2000). Outcome indicators for direct and indirect caregiving. Clinical Nursing Research, 9, 47-69.
    Schumacher, K.L. (1996). Reconceptualizing family caregiving: Family-based illness care during chemotherapy. Research in Nursing and Health, 19, 261-271.
    Schumacher, K.L., Stewart, B.J., Archbold, P.G., Dodd, M.J., & Dibble, S.L. (2000). Family caregiving skill: Development of the concept. Research in Nursing and Health, 23, 191-203.
    Schwarz, K.A., & Roberts, B.L. (2000). Social support and strain of family caregivers of older adults. Holistic Nursing Practice, 14(2), 77-90.
    Shyu, Y.I. (2000). Role tuning between caregiver and care receiver during discharge transition: An illustration of role function mode in Roy's adaptation theory. Nursing Science Quarterly, 13, 323-331.
    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, 1181-1188.
    Smith, M.J., & Liehr, P.R. (2003). The theory of attentively embracing story. In M.J. Smith & P.R. Liehr (Eds.), Middle range theory for nursing (pp. 167-187). New York: Springer.
    Speice, J., Harkness, J., Laneri, H., Frankel, R., Roter, D., Kornblith, A.B., et al. (2000). Involving family members in cancer care: Focus group considerations of patients and oncological providers. Psycho-Oncology, 9, 101-112.
    Stetz, K.M., McDonald, J.C., & Compton, K. (1996). Needs and experiences of family caregivers during marrow transplantation. Oncology Nursing Forum, 23, 1422-1427.
    Strang, V.R., Koop, P.M., Dupuis-Blanchard, S., Nordstrom, M., & Thompson, B. (2006). Family caregivers and transition to long-term care. Clinical Nursing Research, 15, 27-45.
    Strang, V.R., Koop, P.M., & Peden, J. (2002). The experience of respite during home-based family caregiving for persons with advanced cancer. Journal of Palliative Care, 18, 97-104.
    Sze, J., Marisette, S., Williams, D., Nyhof-Young, J., Crooks, D., Husain, A., et al. (2006). Decision making in palliative radiation therapy: Reframing hope in caregivers and patients with brain metastases. Supportive Care in Cancer, 14, 1055-1063.
    Usita, P.M., Hall, S.S., & Davis, J.C. (2004). Role ambiguity in family caregiving. Journal of Applied Gerontology, 23, 20-39.
    Williams, L.A. (2003). Informal caregiving dynamics with a case study in blood and marrow transplantation. Oncology Nursing Forum, 30, 679-686.
    Wong, R.K., Franssen, E., Szumacher, E., Connolly, R., Evans, M., Page, B., et al. (2002). What do patients living with advanced cancer and their carers want to know? A needs assessment. Supportive Care in Cancer, 10, 408-415.
    Wrubel, J., Richards, T.A., Folkman, S., & Acree, M.C. (2001). Tacit definitions of informal caregiving. Journal of Advanced Nursing, 33, 175-181.
    Zabora, J.R., Smith, E.D., Baker, F., Wingard, J.R., & Curbow, B. (1992). The family: The other side of bone marrow transplantation. Journal of Psychosocial Oncology, 10, 35-46.
    Zarit, S.H., Todd, P.A., & Zarit, J.M. (1986). Subjective burden of husbands and wives as caregivers: A longitudinal study. Gerontologist, 26, 260-266.