Evaluation of an educational program for the caregivers of persons diagnosed with a malignant glioma

Rosemary Cashman, Lori J. Bernstein, Denise Bilodeau, Geoff Bowett, Barbara Jackson, Masoud Yousefi, Anca Prica, James Perry


Background: Caring for a loved one with a malignant glioma can be a formidable responsibility. The guarded prognosis, side effects of treatments, and changes in brain function, personality and behaviour pose unique challenges in care provision by family members. It is rare that institutions provide educational programs for caregivers.

Purpose: To evaluate the impact of providing information in an educational program to caregivers of patients diagnosed with a malignant glioma.

Methods: A structured educational program for caregivers of brain tumour patients was developed based upon multidisciplinary expert opinion and caregiver feedback. Twenty-four caregiver participants were enrolled in the program. Knowledge was assessed before, immediately following, and four to six weeks following the program. Open-ended questions were used to explore the caregivers’ experiences, as well as additional benefits derived from the program.

Results: Knowledge scores on testing immediately after the program and four to six weeks following the program were statistically significantly improved from baseline testing, although there was a decline in scores four to six weeks after the program. These findings demonstrate effective knowledge transfer (recall of the information) immediately after the education program and four to six weeks later. Specific qualitative and quantitative data serve as a basis for understanding caregivers’ needs and experiences.

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Adams, M. (1991). Information and education across the phases of

cancer care. Seminars in Oncology Nursing, 7(2), 105-11.

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(6), 375-384.

Barg, F.K., Pasacreta, J.V., Nuamah, I., Robinson, K.D., Angeletti, K.,

Yasko, J., et al. (1998). A description of a psychoeducational

intervention for the family caregivers of patients with cancer.

Journal of Family Nursing, 4, 394-413.

Blanchard, C.G., Ruckdeschel, J.C., & Albrecht, T.L. (1997). The

crisis of cancer: Psychological impact on family caregivers.

Oncology, 11(2), 189-94.

Borneman, T., Chu, D.Z.J., Wagman, L., Ferrell, B., Juarez, G.,

McCahill, L.E., et al. (2003). Concerns of family caregivers of

patients with cancer facing palliative surgery for advanced

malignancies. Oncology Nursing Forum, 30(6), 997-1005.

Deorah, S., Lynch, C.F., Sibenaller, Z.A., & Ryken, T.C. (2006).

Trends in brain cancer incidence and survival in the United States:

Surveillance, epidemiology, and end results program, 1973 to

Neurosurg Focus, 20(4) E3.

Chapman, K., & Pepler, C. (1998). Coping, hope and anticipatory grief

in family members in palliative care. Cancer Nursing, 21, 226-34.

Edwards, B., & Clarke, V. (2004). The psychological impact of a

cancer diagnosis on families: The influence of family functioning

and patients’ illness characteristics on depression and anxiety.

Psycho-oncology 13, 562-76.

Germino, B.B., Fife, B.L., & Funk, S.G. (1995). Cancer and the

partner relationship: What is its meaning? Seminars in Oncology

Nursing, 11, 43-50.

Given, B., Wyatt, G., Given, C., Gift, A., Sherwood, P., DeVoss, D., et

al. (2005). Burden and depression among caregivers of patients with

cancer at the end-of-life. Oncology Nursing Forum, 31(6), 1105-17.

Gotay, C.C. (1984). The experience of cancer during early and

advanced stages: The views of patients and their mates. Social

Science and Medicine, 18, 605-613.

Haley, W.E., Levine, E.G., Brown, S.L., & Bartolucci, A.A. (1987).

Stress, appraisal, coping, and social support as predictors of

adaptational outcome among dementia caregivers. Psychology

and Aging, 2(4), 323-330.

Heim, E., Valach, L., & Schaffner, L. (1997). Coping and

psychosocial adjustment: Longitudinal effects over time and

stages in breast cancer. Psychosomatic Medicine, 59, 408-18.

Hudson, P.L., Aranda, S., & Hayman-White, K. (2005). A psychoeducational

intervention for family caregivers receiving palliative

care: A randomized controlled trial. Journal of Pain and

Symptom Management, 30(4), 329-41.

Keefe, F.J., Ahles, T.A., Porter, L.S., Sutton, L.M., McBride, C.M., Pope,

M.S., et al. (2002). The self-efficacy of family caregivers for helping

cancer patients manage pain at end-of-life. Pain 103(1-2),157-62.

Keir, S.T., Guill, A.B., Carter, K.E., Booles, L.C., Gonzales, L., &

Friedman, H.S. (2006). Differential levels of stress in caregivers of

brain tumor patients – Observations from a pilot study. Support

Care Cancer [Epub ahead of print].

Laizner, A., Yost, K.M.S., Barg, F.K., & McCorkle, R. (1993). Needs

of family caregivers of persons with cancer: A review. Seminars

in Oncology Nursing, 9(2), 114-20.

Matthews, B.A. (2003). Role and gender differences in cancer-related

distress: A comparison of survivor and caregiver self-reports.

Oncology Nursing Forum, 30, 493-99.

Northouse, L.L. (1994). Breast cancer in younger women: Effects on

interpersonal and family relations. Journal of the National

Cancer Institute Monographs, 16, 183-90.

Northouse, L.L., Mood, D., Kershaw, T., Schafenencker, A., Mellon,

S., Walker, J., et al. (2002). Quality of life of women with recurrent

breast cancer and their family members. Journal of Clinical

Oncology, 20, 4050-64.

Northouse, L.L., & Peters-Golden, H. (1993). Cancer and the family:

Strategies to assist spouses. Seminars in Oncology Nursing, 9(2),


Oberst, M., & James, R. (1985). Going home: Patient and spouse

adjustment following cancer surgery. Topics in Clinical Nursing,

, 46-57.

Pasacreta, J.V., Barg, F., Nuamah, I., & McCorkle, R. (2000). Participant

characteristics before and four months after attendance at a family

caregiver cancer education program. Cancer Nursing, 23(4), 295-303.

Scherbring, M. (2002). Effect of caregiver perception of preparedness

on burden in an oncology population. Oncology Nursing Forum,

(6), 70-76.

Schumacher, K.L., Dodd, M.J., & Paul, S.M. (1995). The stress

process in family caregivers of persons receiving chemotherapy.

Research in Nursing and Health, 16, 395-404.

Schulz, R., & Beach, S.R. (1999). Caregiving as a risk factor for

mortality: The Caregiver Health Effects Study. JAMA, 282, 2215-19.

Schut, H.A., Stroebe, M.S., van den Bout, J., & de Keijser, J. (1997).

Intervention for the bereaved: Gender differences in the efficacy of

two counselling programmes. British Journal of Clinical

Psychology, 36(Pt 1), 63-72.

Sherwood, P.R., Given, B.A., Doorenbos, A.Z., & Given, C.W.

(2004). Forgotten voices: Lessons from the bereaved caregivers of

persons with a brain tumour. International Journal of Palliative

Nursing, 10(2) 67-74.

Sherwood, P.R., Given, B.A., Given, C.W., Schiffman, R.F., Murman,

D.L., Lovely, M., et al. (2006). Predictors of distress in caregivers

of a primary malignant brain tumor. Research in Nursing and

Health, 29, 105-20.

Strang, S., Strang, P., & Ternestedt, B. (2001). Existential support in brain

tumour patients and their spouses. Support Care Cancer, 9, 625-33.

Stupp, R., Mason, W.P., van den Bent, M.J., Weller, M., Fisher, B.,

Taphoorn, M.J.B., et al.; European Organisation for Research and

Treatment of Cancer Brain Tumor and Radiotherapy Groups;

National Cancer Institute of Canada Clinical Trials Group. (2005).

Radiotherapy plus concomitant and adjuvant temozolomide for

glioblastoma. New England Journal of Medicine, 352, 987-96.

Toseland, R.W., Blanchard, C.G., & McCallion, P. (1995). A problemsolving

intervention for caregivers of cancer patients. Social

Science & Medicine, 40, 517-28.

Villejo, L., & Meyers, C. (1991). Brain function, learning styles, and

cancer patient education. Seminars in Oncology Nursing, 7(2),


Wallhagen, M.I. (1992). Perceived control and adaptation in elder

caregivers: Development of an explanatory model. International

Journal of Aging and Human Development, 36, 219-37.

Wong, R.K.S., Franssen, E., Szumacher, E., Connolly, R., Evans, M.,

Page, B. (2002). What do patients living with advanced cancer and

their carers want to know? – A needs assessment. Supportive

Care in Cancer, 10, 408-15.


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