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Family Caregivers in Cancer: Roles and Challenges (PDQ®): Supportive care - Health Professional Information [NCI] - Factors to Consider in Caregiver Assessment

Instruments for Evaluating Caregiver Burden continued...

The Family and Medical Leave Act

The Family and Medical Leave Act of 1993 (FMLA) was designed to give employees the option of taking time off from work for their own serious medical condition or that of a relative without losing their benefits or their jobs. Family members are entitled to a maximum of 12 weeks' leave under the law; however, since its implementation, FMLA has been met with resistance from employers and underutilization by employees. In an exploratory study involving 45 caregivers of children with chronic illnesses, FMLA was least used by unmarried women with annual incomes lower than $35,000.[33]

Norms, Roles, and Expectations

The original theoretical models for understanding caregiver burden highlighted caregiver appraisal and role strain.[34,35] Multiple roles performed by caregivers of cancer patients can compete with each other in relation to caregivers' physical and emotional resources.

Role strain theory has been used to explain caregiver burden in numerous studies. Results of a study of 457 middle-aged caregivers showed that the more social roles a caregiver performed, the more likely the caregiver was to experience stress and negative affect.[36] Employed caregivers who were also caring for children reported higher levels of stress; however, employed caregivers benefited from the respite provided by work and from the support of employers and co-workers, which enabled them to replenish their psychological resources. Encouraging caregivers to maintain their roles as employees might therefore be helpful.

Focus has shifted to the treatment of caregiving as a dyadic phenomenon, based on the recognition that family caregiver roles are complex and overlapping. By its nature, caregiving is fundamentally relational [37] and often reciprocal.[38,39] To be effective, any assessment should take into account not only what the care recipient requires but also what the caregiver is able and willing to provide.

References:

  1. Levine C: Nursing and social work leadership. Am J Nurs 108 (9 Suppl): 13-5, 2008.
  2. Pinquart M, Sörensen S: Differences between caregivers and noncaregivers in psychological health and physical health: a meta-analysis. Psychol Aging 18 (2): 250-67, 2003.
  3. Yee JL, Schulz R: Gender differences in psychiatric morbidity among family caregivers: a review and analysis. Gerontologist 40 (2): 147-64, 2000.
  4. Bookwala J, Schulz R: A comparison of primary stressors, secondary stressors, and depressive symptoms between elderly caregiving husbands and wives: the Caregiver Health Effects Study. Psychol Aging 15 (4): 607-16, 2000.
  5. Gaugler JE, Hanna N, Linder J, et al.: Cancer caregiving and subjective stress: a multi-site, multi-dimensional analysis. Psychooncology 14 (9): 771-85, 2005.
  6. Honea NJ, Brintnall R, Given B, et al.: Putting Evidence into Practice: nursing assessment and interventions to reduce family caregiver strain and burden. Clin J Oncol Nurs 12 (3): 507-16, 2008.
  7. Glajchen M, Kornblith A, Homel P, et al.: Development of a brief assessment scale for caregivers of the medically ill. J Pain Symptom Manage 29 (3): 245-54, 2005.
  8. Weitzner MA, Jacobsen PB, Wagner H Jr, et al.: The Caregiver Quality of Life Index-Cancer (CQOLC) scale: development and validation of an instrument to measure quality of life of the family caregiver of patients with cancer. Qual Life Res 8 (1-2): 55-63, 1999.
  9. Weitzner MA, McMillan SC: The Caregiver Quality of Life Index-Cancer (CQOLC) Scale: revalidation in a home hospice setting. J Palliat Care 15 (2): 13-20, 1999.
  10. Given CW, Given B, Stommel M, et al.: The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15 (4): 271-83, 1992.
  11. Robinson BC: Validation of a Caregiver Strain Index. J Gerontol 38 (3): 344-8, 1983.
  12. Zarit SH, Reever KE, Bach-Peterson J: Relatives of the impaired elderly: correlates of feelings of burden. Gerontologist 20 (6): 649-55, 1980.
  13. Minaya P, Baumstarck K, Berbis J, et al.: The CareGiver Oncology Quality of Life questionnaire (CarGOQoL): development and validation of an instrument to measure the quality of life of the caregivers of patients with cancer. Eur J Cancer 48 (6): 904-11, 2012.
  14. Wells DK, James K, Stewart JL, et al.: The care of my child with cancer: a new instrument to measure caregiving demand in parents of children with cancer. J Pediatr Nurs 17 (3): 201-10, 2002.
  15. Archbold PG, Stewart BJ, Greenlick MR, et al.: Mutuality and preparedness as predictors of caregiver role strain. Res Nurs Health 13 (6): 375-84, 1990.
  16. Kim Y, Given BA: Quality of life of family caregivers of cancer survivors: across the trajectory of the illness. Cancer 112 (11 Suppl): 2556-68, 2008.
  17. Pitceathly C, Maguire P: The psychological impact of cancer on patients' partners and other key relatives: a review. Eur J Cancer 39 (11): 1517-24, 2003.
  18. Feinberg LF: Caregiver assessment. Am J Nurs 108 (9 Suppl): 38-9, 2008.
  19. Pinquart M, Sörensen S: Ethnic differences in stressors, resources, and psychological outcomes of family caregiving: a meta-analysis. Gerontologist 45 (1): 90-106, 2005.
  20. Li H: Barriers to and unmet needs for supportive services: experiences of Asian-American caregivers. J Cross Cult Gerontol 19 (3): 241-60, 2004.
  21. Ngo-Metzger Q, McCarthy EP, Burns RB, et al.: Older Asian Americans and Pacific Islanders dying of cancer use hospice less frequently than older white patients. Am J Med 115 (1): 47-53, 2003.
  22. Guarnaccia PJ, Parra P: Ethnicity, social status, and families' experiences of caring for a mentally ill family member. Community Ment Health J 32 (3): 243-60, 1996.
  23. Cox C, Monk A: Strain among caregivers: comparing the experiences of African American and Hispanic caregivers of Alzheimer's relatives. Int J Aging Hum Dev 43 (2): 93-105, 1996.
  24. Covinsky KE, Eng C, Lui LY, et al.: Reduced employment in caregivers of frail elders: impact of ethnicity, patient clinical characteristics, and caregiver characteristics. J Gerontol A Biol Sci Med Sci 56 (11): M707-13, 2001.
  25. Gordon AK: Deterrents to access and service for blacks and Hispanics: the Medicare Hospice Benefit, healthcare utilization, and cultural barriers. Hosp J 10 (2): 65-83, 1995.
  26. Glajchen M: The emerging role and needs of family caregivers in cancer care. J Support Oncol 2 (2): 145-55, 2004 Mar-Apr.
  27. Scherbring M: Effect of caregiver perception of preparedness on burden in an oncology population. Oncol Nurs Forum 29 (6): E70-6, 2002.
  28. Given CW, Stommel M, Given B, et al.: The influence of cancer patients' symptoms and functional states on patients' depression and family caregivers' reaction and depression. Health Psychol 12 (4): 277-85, 1993.
  29. Schulz R, Beach SR: Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA 282 (23): 2215-9, 1999.
  30. Cameron JI, Franche RL, Cheung AM, et al.: Lifestyle interference and emotional distress in family caregivers of advanced cancer patients. Cancer 94 (2): 521-7, 2002.
  31. Given B, Sherwood PR: Family care for the older person with cancer. Semin Oncol Nurs 22 (1): 43-50, 2006.
  32. Hayman JA, Langa KM, Kabeto MU, et al.: Estimating the cost of informal caregiving for elderly patients with cancer. J Clin Oncol 19 (13): 3219-25, 2001.
  33. Roog SA, Knight TA, Koob JJ, et al.: The utilization and effectiveness of the Family and Medical Leave Act of 1993. J Health Soc Policy 18 (4): 39-52, 2004.
  34. Lazarus RS, Folkman S: Stress, Appraisal, and Coping. New York, NY: Springer Publishing Co, 1984.
  35. Pearlin LI, Mullan JT, Semple SJ, et al.: Caregiving and the stress process: an overview of concepts and their measures. Gerontologist 30 (5): 583-94, 1990.
  36. Kim Y, Baker F, Spillers RL, et al.: Psychological adjustment of cancer caregivers with multiple roles. Psychooncology 15 (9): 795-804, 2006.
  37. Sanders SJ, Kittay EF: Shouldering the burden of care. Hastings Cent Rep 35 (5): 14-5, 2005 Sep-Oct.
  38. Feld S, Dunkle RE, Schroepfer T, et al.: Expansion of elderly couples' IADL caregiver networks beyond the marital dyad. Int J Aging Hum Dev 63 (2): 95-113, 2006.
  39. Lingler JH, Sherwood PR, Crighton MH, et al.: Conceptual challenges in the study of caregiver-care recipient relationships. Nurs Res 57 (5): 367-72, 2008 Sep-Oct.
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WebMD Public Information from the National Cancer Institute

Last Updated: February 25, 2014
This information is not intended to replace the advice of a doctor. Healthwise disclaims any liability for the decisions you make based on this information.
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