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Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life

  • Mary W. Byrne (a1), Elana Evan (a2), Lorie S. Goshin (a1), Matthew D. Erlich (a3), Jackie H.J. Kim (a2), John M. Saroyan (a4) and Lonnie K. Zeltzer (a5)...

Abstract

Objective:

Using data from a multi-site study of parent–child symptom reporting concordance, this secondary analysis explored the role of parent self-efficacy related to pain management for seriously ill school-age children and adolescents.

Method:

In the initial study, 50 children and adolescents who were expected to survive 3 years or less were recruited along with their parent/primary caregiver. Parent self-report data were used in this secondary analysis to describe parent self-efficacy for managing their child's pain, caregiver strain, mood states, and perception of the child's pain; to explore relationships among these variables; and to determine predictors of greater self-efficacy.

Results:

Parents expressed a wide range of self-efficacy levels (Chronic Pain Self-Efficacy Scale; possible range 10–100, mean 76.2, SD 14.7) and higher levels on average than reported previously by family caregivers of adult patients. Caregiver Strain Index scores were markedly high (possible range 0–13, mean 8.1, SD 3.8) and inversely correlated with self-efficacy (r = −0.44, p = 0.001). On the Profile of Mood States parents reported more negative moods (t = 4.0, p < 0.001) and less vigor (t = −5.0, p < 0.001) than adults in a normative sample, yet vigor rather than mood disturbance predicted self-efficacy. With the exception of child age, self-efficacy was not associated with demographics (child gender, ethnicity, household income, parent age, education, family size) or with the diagnostic groups (primarily cardiac and oncologic) comprising the sample. Younger child age, less caregiver strain, more parent vigor, and parent perception that child is without pain predicted more than half of the variance in parent self-efficacy (R2 = 0.51).

Significance of results:

Findings advance knowledge of parent self-efficacy in managing the pain of a child with life-threatening illness. Results can be used to design supportive interventions enhancing parents’ caregiving roles during their child's last stages of life.

Copyright

Corresponding author

Address correspondence and reprint requests to: Mary W. Byrne, Columbia University School of Nursing, 617 West 168 Street, New York, NY 10032. E-mail: mwb4@columbia.edu

References

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Anderson, K., Dowds, B., Pelletz, R., Edwards, W. Peeters-Asdourian, C. (1995). Development and inital validation of a scale to measure self-efficacy beliefs in patients with chronic pain. Pain 63, 7784.
Bandura, A. (1977). Self-efficacy: Toward a unifying theory of behavioral change. Psychological Review, 84(2), 191215.
Bandura, A. (1982). Self-efficacy mechanism in human agency. American Psychologist, 37(2), 122147.
Bandura, A. (1997). Self-efficacy: The exercise of control. New York: W. H. Freeman.
Barakat, L.P., Simon, K., Schwartz, L.A, Radcliffe, J. (2008). Correlates of pain-rating concordance for adolescents with sickle cell disease and their caregivers. The Clinical Journal of Pain, 24, 438446.
Barlow, J., Powell, L., Gilchrist, M., Fotiadou, M. (2008). The effectiveness of the Training and Support Program for parents of children with disabilities: a randomized controlled trial. Journal of Psychosomatic Research, 64(1), 5562.
Bursch, B., Schwankovsky, L., Gilbert, J., Zieger, R. (1999). Construction and validation of four childhood asthma self-management scales: parent barriers, child and parent self-efficacy, and parent belief in treatment efficacy. Journal of Asthma, 36(1), 115128.
Drake, R., Frost, J., Collins, J.J. (2003). The symptoms of dying children. Journal of Pain & Symptom Management, 26, 594603.
Feudtner, C., Christakis, D.A., Connell, F.A. (2000). Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington State, 1980-1997. Pediatrics, 106, 205209.
Feudtner, C., Feinstein, J.A., Satchell, M., Zhao, H., Kang, T.I. (2007). Shifting place of death among children with complex chronic conditions in the United States, 1989-2003. Journal of the American Medical Association, 297, 27252732.
Hastings, R.P. & Brown, T. (2002). Behavior problems of children with autism, parental self- efficacy, and mental health. American Journal of Mental Retardation, 107, 222232.
Hays, R., Valentine, J., Haynes, G., Geyer, J.R., Villareale, N., McKinstry, B., Varni, J.W., Churchill, S.S. (2006). The Seattle pediatric palliative care project: Effects on family satisfaction and health-related quality of life. Journal of Palliative Medicine, 9, 716728.
Hoekstra-Weebers, J.E., Jaspers, J.P., Kamps, W.A., Klip, E.C. (1999). Risk factors for psychological maladjustment of parents of children with cancer. Journal of the American Academy of Child & Adolescent Psychiatry, 38, 15261535.
Hudson, P. (2003). A conceptual model and key variables for guiding supportive interventions for family caregivers of people receiving palliative care. Palliative & Supportive Care, 7, 353365.
Jalmsell, L., Kriecbergs, U., Onelov, E., Steineck, G., Henter, J-I. (2006). Symptoms affecting children with malignancies during the last month of life: A nationwide follw-up. Pediatrics, 117, 13141320.
Jones, T. & Prinz, R. (2005). Potential roles of parental self-efficacy in parent and child adjustment: A review. Clinical Psychology Review, 25, 341363.
Keefe, F.J., Ahles, T.A., Porter, L.S., Sutton, L.M., McBride, C.M., Pope, M.S., McKinstry, E.T., Furstenberg, C.P., Dalton, J., Baucom, D.H. (2003). The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life. Pain, 103, 157162.
Keefe, F.J. & France, C. (1999). Pain: Biopsychosocial mechanisms and management. Current Directions in Psychological Science, 8, 137141.
Kieckhefer, G.M., Trahms, C.M, Churchill, S.S., Simpson, J.N. (2009). Measuring parent-child shared management of chronic illness. Pediatric Nursing, 35, 101108.
Litt, M., Shafer, D., Napolitano, C. (2004). Momentary mood and coping processes in TMD pain. Health Psychology, 23, 354362.
McNair, D., & Heuchert, J.P. (2005). Profile of Mood States: Technical Update. North Tonawanda, NY, Multi-Health Systems Inc.
McNair, D., Lorr, M., Droppleman, L. (1971). Manual: Profiles of Mood States. San Diego, CA, Educational and Industrial Testing Service.
McNair, D., Lorr, M., Droppleman, L. (1992). Manual: Profile of Mood States. San Diego, CA, Educational and Industrial Testing Service.
Melnyk, B.M., Alpert-Gillis, L.J., Feinstein, N.F., Crean, H.F., Johnson, J., Fairbanks, E., Small, L., Rubenstein, J., Slota, M., Corbo-Richert, B. (2004). Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics, 113, 597607.
Melnyk, B.M., Alpert-Gillis, L.J., Hensel, P.B., Cabble-Beiling, R.C. Rubenstein, J.S. (1997). Helping mothers cope with a critically ill child: a pilot test of the COPE intervention. Research in Nursing & Health, 20, 314.
Miaskowski, C., Kragness, L., Dibble, S., Wallhagen, M. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain and Symptom Management, 13, 138147.
Miaskowski, C., Zimmer, E., Barrett, K., Dibble, S., Wallhagen, M. (1997). Differences in patients' and family caregivers' perceptions influence patient and caregiver outcomes. Pain, 72, 217226.
Platt, O., Brambilla, D., Rosse, W.F., Milner, P.F., Castro, O., Steinberg, M.H., Klug, P.P. (1994). Mortality in sickle cell disease: Life expectancy and risk factors for early death. New England Journal of Medicine, 330, 16391644.
Porter, L., Keefe, F., Garst, J., McBride, C., Baucom, D. (2007). Self-efficacy for managing pain symptoms, and function in patients with lung cancer and their informal caregivers: Associations with symptoms and distress. Pain, 137, 306315.
Raina, P., O'Donnell, M., Rosenbaum, P., Brehaut, J., Walter, S.D., Russell, D., Swinton, M. Zhu, B., Wood, E. (2005). The health and well-being of caregivers of children with cerebral palsy. Pediatrics, 115, 626636.
Ravilly, S. & Robinson, W. (1996). Chronic pain in cystic fibrosis. Pediatrics, 98, 741.
Robinson, B. (1983). Validation of a Caregiver Strain Index. Journal of Gerontology, 38, 344348.
Rucker-Whitaker, C. Basu, S., Kravitz, G., Bushnell, M., deLeon, C. (2007). A pilot study of self-management in African Americans with common chronic disease. Ethnicity and Disease, 14, 611616.
Silver, E.J., Bauman, L.J., Ireys, H.T. (1995). Relationships of self-esteem and efficacy to psychological distress in mothers of children with chronic physical illnesses. Health Psychology 14, 333340.
Sloper, P. (2000). Predictors of distress in parents of children with cancer: a prospective study. Journal of Pediatric Psychology, 25, 7991.
Su, C., Lu, X., Chen, W., Wang, T. (2009). Promoting self-management improves the health status of patients having peritoneal dialysis. Journal of Advanced Nursing, 65, 13811389.
Szyfelbein, S., Osgood, P., Carr, D. (1985). The assessment of pain and plasma beta-endorphin immunoactivity in burned children. Pain, 22, 173182.
van der Meer, V., van Stel, H., Detmar, S., Otten, W., Sterk, P., Sont, J. (2007). Internet-based self-management offers an opportunity to achieve better asthma control in adolescents. Chest, 132, 112119.
Wolfe, J., Grier, H.E., Klar, N., Levin, S.B., Ellenbogen, J.M., Salem-Schatz, S., Emanuel, E.J., Weeks, J.C. (2000). Symptoms and suffering at the end of life in children with cancer. New England Journal of Medicine, 342, 326333.
Xu, J., Kochankek, K., Tejada-Vera, B. (2010). National Vital Statistics Reports. Deaths: Final Data for 2007, Center for Disease Control and Prevention Division of Vital Statistics, 58.

Keywords

Parent self-efficacy for managing pain in seriously ill children and adolescents nearing end of life

  • Mary W. Byrne (a1), Elana Evan (a2), Lorie S. Goshin (a1), Matthew D. Erlich (a3), Jackie H.J. Kim (a2), John M. Saroyan (a4) and Lonnie K. Zeltzer (a5)...

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