2010 Pilot Study 2

Problem-Solving Skills Training Program for Family Caregivers to Address Pain Management.

Principal Investigators: A. Nirenberg (Nursing) and V Raveis (Public Health)

Specific Aims. In this pilot project, we will design a short-term, evidence-based, and culturally sensitive training program for familial caregivers to lower income, community-dwelling, older (65+) minority patients. The goal of the intervention is to maximize families’ caregiving abilities and problem-solving skills related to pain control. By focusing attention on family caregivers, we posit that we will be able to foster improved pain palliation, adherence to pain management regimes, and improved health communication. We hypothesize further that adequate pain management and palliative care will not only benefit older patients but will also be protective of the caregiver’s well-being. Indeed, pain is one of the more difficult symptoms with which family caregivers must cope. Family caregivers tend to feel helpless about being able adequately to palliate a patient’s pain (1) and to experience heightened strain and depressive symptoms (2). To address these problems, the specific aims of this pilot are to: 1) design a brief caregiver problem-solving training program focused on pain management among older persons; and, 2) assess the feasibility and acceptability of the pilot program’s content and format.

Background and Significance. Families play a central role in pain management (1), and the shift from the hospital to home-based care has expanded familial caregivers’ care tasks (3).  Family caregivers are directly involved in administering medications, checking proper dosage, providing pain relief, and monitoring treatment effectiveness (4). Further, family members’ frequent and ongoing contact with their older relative makes them ideally suited to monitor patients’ functioning and detect subtle changes in their condition.  Older patients are also more likely to disclose potentially serious health symptoms to family members than to their physician (5). In their role as patient advocate, family caregivers communicate with health professionals and other service providers regarding care needs and symptom palliation (6)  Relied upon to make health care decisions in the patients’ best interest; family opinion can influence patients’ acceptance of a specific pain management approach (7). Families’ support of and involvement in patients’ symptom management is associated with better patient adherence to behavioral self-management guidelines (8).
Despite their positive role for older relatives, family caregivers’ misconceptions about medication may interfere with palliation of pain. In particular, relatives who are less educated and of lower income have been found to express concerns about using pain medication (9), fearing addiction and other uncomfortable side effects, such as confusion (1,9,10). Such concerns can result in poorly controlled pain because of a reluctance to use pain medications as prescribed or to adhere to an analgesic regimen (7,11).  Low health literacy also contributes to poor adherence to medication regimens (7,12). Underreporting of pain during a medical encounter can also impede palliation efforts.  Patients and families may not mention pain due to cultural beliefs that pain and suffering should be endured with stoicism (12,13) or fear that mentioning the pain will distract physicians from more important health care issues (7,14). For these reasons, an intervention study involving family members in pain management is warranted.

Design and Methods.  Family caregiver pilot program. The goal of this pilot study is to translate an evidence-based program developed for family caregivers to use in the field of pain and pain management.  The intervention to be pilot tested will be derived from an evidence-based program developed by Houts and colleagues ­the Prepared Family Caregiver Program (PFCP) (15-17). Based on the orientation of Problem-Solving Therapy, the techniques focused on in the program, summarized by the acronym COPE (Creativity, Optimism, Planning and Expert information), have demonstrated utility for improving the experience of caregivers in the home. The PFCP also includes a home care manual for family caregivers in which expert information is organized in a problem-solving format. The program will be adapted specifically for the issue of pain and pain management and tested in this pilot.

Format and content of pilot-family caregiver program. All sessions will emphasize problem-solving concepts and skills enhancement, but each individual session will address a different topic. For example, the session focused on pain control will provide a general overview on pain including pharmacologic information, discuss drug addiction and drug tolerance, and explain how routine dosing can prevent pain. It will also address alternative approaches to pain control and include a discussion of folk healthcare practices and beliefs.  The four session topics are: 1) overview of the problem-solving approach to care provision; 2) pain; 3) communication with health care providers about pain; and 4) communication with patient, including techniques for effective family decision-making about pain. The sessions will be delivered in a small group format (5-7 caregivers). At each session, problem-solving issues and techniques will be illustrated through case examples and action plans. Through active listening, the health educator guides the discussion to what is meaningful to the participants. Relevant handouts and booklets will be provided to the caregivers to reinforce the session content.

Sample. Potentially eligible patients (aged 65+) and their family caregivers will be recruited from Columbia’s ambulatory geriatric care practice. Dr. Granieri (Chief of Geriatrics at Columbia) will identify and approach patients who are receiving outpatient, community-based health care services and who require medical management of pain. Patients who express interest in learning more about the study will then be contacted by Dr. Nirenberg, who will then recruit the family caregiver.

Development of program content (Aim 1). The program will be adapted to the specific topic of pain and pain management. One source of information for the adaptation will be key informant interviews conducted with five older patients and their family caregivers by Drs. Raveis and Nirenberg. These interviews will be used to provide relevant case examples and to contextualize sample action plans for the caregiver training program on the topic of pain. Program content will be informed by the investigators’ clinical experience and relevant literature. Dr. Raveis has successfully implemented such an approach in her intervention programs. Her expertise in this area will guide the development of the proposed program. Dr. Granieri will provide clinical and practice insights on geriatric health care. Dr. Nirenberg who has clinical expertise in oncology and palliative care will provide insights into pain and symptom management.

Piloting the family caregiver program (Aim 2). The intervention program will be piloted with a sample of 20-30 familial caregivers to older patients.  To assess the feasibility and accessibility of this program, a variety of report forms will be used to monitor the delivery of the intervention and aid in the evaluation of the training content and format. Pretest and posttest questionnaires will be administered to both those caregivers undergoing the treatment and to the comparison group.  Additionally, treatment participants will be interviewed to determine satisfaction with the intervention program’s structure and content, assess what was helpful, and discuss what they would like to see changed or improved. These insights will inform future direction of the investigator’s translational research program, with the eventual goal of testing the family caregiver program in a randomized control trial.

Next Steps. Findings from this study will be used to inform the preparation of an R01 application (and applications to other sources as well) to assess the efficacy of this family caregiver intervention in a controlled trial and to develop pathways for dissemination.

References:

  1. Ferrell, B.R., Cohen, M.Z., Rhiner, M. & Rozek, A. (1991). Pain as a metaphor for illness. Part II: Family caregivers’ management of pain. Oncology Nursing Forum, 18:1315-1321.
  2. Miaskowski, C., Kragness, L., Dibble, S., et al. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. J Pain Symptom Manage 13:138-147.
  3. Siegel, K., Raveis, V., Mor, V. & Houts, P. (1991). The relationship of spousal caregiver burden to patient disease and treatment-related conditions. Annals of Oncology, 2:511-516.
  4. National Institute of Aging & National Cancer Institute. (2001). Exploring the role of cancer centers for integrating aging and cancer research. Workshop report: June13-15. Bethesda, MD.
  5. Brody, E.M. & Kleban, M.H. (1981). Physical and mental health symptoms of older people: Who do they tell? Journal of American Geriatric Society, 29:442-449.
  6. Blanchard, C.G., Albrecht, T.L. & Ruckdeschel J.C. (1997). The crisis of cancer: Psychological impact on family caregivers. Oncology, 11:189-194.
  7. Anderson, K.O., Richman, S.P., Hurley, J., Palos, G., Valero, V.,    Mendoza,T.R., Gnning, I., Cleeland, C. S. (2002).  Cancer pain management among underserved minority patients: Perceived needs and barriers to optimal control. Cancer, 94:2295-2304.
  8. Fisher, L., Chesla, C.A.., Bartz, R.J., Gilliss, C., Skaff M.M., Sabogal, F., Kanter, R.A. & Lutz, C.P. (1998). The family and type 2 diabetes: A framework for intervention. Diabetes Educator, 24:599-607.
  9. Ward, S. E. & Hernandez, L. (1994).  Patient-related barriers to management of cancer pain in Puerto Rico. Pain, 58:233-238.
  10. Dar, R., Barden, P., Beach, C. & Cleeland, C.S. (1992). Cancer pain in the marital system: A study of patients and their spouses. Journal of Pain and Symptom Managment, 7:87-93.
  11. Juarez, G., Ferrell, B. & Borneman, T. (1998).  Influence of culture on cancer pain management in Hispanic patients. Cancer Practice, 6:262-269.
  12. Cleeland, C.S., Janjan, N.A., Scott, C.B., Seiferheld, W.F. & Curran, W.J. (2000). Cancer pain management by radiotherapists: A survey of radiation therapy oncology group physicians. International Journal of Radiation Oncology Biology Physics, 47:203-208.
  13. Pargeon, K.I. & Hailey, B. J. (1999).  Barriers to effective cancer pain management: A review of the literature. Journal of Pain and Symptom Management, 18:358-368.
  14. Rost, K. & Frankel, R. (1993). The introduction of the older patient=s problems in the medical visit. Journal of Aging and Health, 5:387-401.
  15. Bucher, J.A. & Houts, P.S. (1999). Improving problem-solving skills of family caregivers through group education.  Journal of Psychosocial Oncology, 16:73-84.
  16. Bucher, J.A., Houts, P.S., Nezu, C.M. & Nezu, A.M. (1999). Improving problem-solving skills of family caregivers through group education.  Journal of Psychosocial Oncology, 16:73-84.
  17. Houts, P.S., Nezu, A.M., Nezu, C.M. & Bucher, J.A. (1996).  The prepared family caregiver: A problem-solving approach to family caregiver education.  Patient Education and Counseling, 27:63-73.