Skip to main content
Log in

Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Adult cancer patients (ACPs) in resource-limited settings disproportionately suffer from inadequate pain control despite advancements in pain management. Family caregivers (FCGs) can support optimal pain control for ACPs in these settings if they are knowledgeable and confident about the needed care. However, the status of FCGs’ knowledge and self-efficacy (SE) for pain management in developing countries is not well established.

Purpose

To assess the FCGs’ knowledge and SE levels for pain management among ACPs while at home in a resource-limited setting.

Methods

Using a questionnaire that comprised a Family Pain Questionnaire and Chronic Pain Self-efficacy Scale, data were collected from 284 FCGs of ACPs receiving care from two cancer care centres.

Results

The FCGs had moderate knowledge (mean = 41.70 ± 14.1) and SE (mean = 795.95 ± 301.3) levels for pain management at home for ACPs. Majority of the FCGs had low knowledge (52.1%), but expressed higher SE (52.5%). Poor self-rated health among FCGs was significantly associated with low knowledge levels (OR = 1.75; 95% CI 1.024–2.978, p = 0.041). SE was significantly associated with perceiving a low impact of caregiving on health (OR = 1.55; 95% CI 1.074–2.239, p = 0.019), hours of caregiving per week (OR = 0.52; 95% CI 0.315–0.854; p = 0.01) and receiving organisational support (OR = 0.388; 95% CI 0.222–0.679; p = 0.001).

Conclusion

The results show a need for deliberate interventions to enhance FCG knowledge and SE for pain management at home as one of the ways of improving cancer pain management in resource-limited settings.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Similar content being viewed by others

References

  1. Palos GR, Mendoza TR, Liao K et al (2011) Caregiver symptom burden: the risk of caring for an underserved patient with advanced cancer. Cancer 117:1070–1079. https://doi.org/10.1002/cncr.25695

    Article  PubMed  Google Scholar 

  2. Stark L, Tofthagen C, Visovsky C, McMillan SC (2012) The symptom experience of patients with cancer. J Hosp Palliat Nurs 14:61–70. https://doi.org/10.1097/NJH.0b013e318236de5c

    Article  PubMed  PubMed Central  Google Scholar 

  3. Higginson IJ, Murtagh FE, Osborne TR (2013) Epidemiology of pain in cancer. http://link.springer.com/chapter/10.1007/978-0-85729-230-8_2#page-1. Accessed 16 June 2015

  4. McCarthy B (2011) Family members of patients with cancer: what they know, how they know and what they want to know. Eur J Oncol Nurs 15:428–441. https://doi.org/10.1016/j.ejon.2010.10.009

    Article  PubMed  Google Scholar 

  5. den Beuken-van Everdingen MHJ V, De Rijke JM, Kessels AG, Schouten HC, Van Kleef M, Patijn J (2007) Prevalence of pain in patients with cancer: a systematic review of the past 40 years. Ann Oncol 18:1437–1449. https://doi.org/10.1093/annonc/mdm056

    Article  Google Scholar 

  6. Namukwaya E, Leng M, Downing J, Katabira E (2011) Cancer pain management in resource –limited settings: a practice review. Pain Res treat. http://www.hindawi.com/journals/prt/2011/393404/abs. Accessed on 4th January 2018, p 1, 6

  7. Harding R, Selman L, Agupio G, Dinat N, Downing J, Gwyther L, Mashao T, Mmoledi K, Sebuyira LM, Ikin B, Higginson IJ (2011) The prevalence and burden of symptoms among cancer patients attending palliative care in two African countries. Eur J Cancer 47:51–56. https://doi.org/10.1016/j.ejca.2010.08.003

    Article  PubMed  Google Scholar 

  8. Hökkä M, Kaakinen P, Pölkki T (2014) A systematic review: non-pharmacological interventions in treating pain in patients with advanced cancer. J Adv Nurs 70:1954–1969. https://doi.org/10.1111/jan.12424

    Article  PubMed  Google Scholar 

  9. Hjernstad MH, Haugen DF, Bennett MI, Kaasa S (2012) Pain assessment tools in palliative cancer care. In: Moore RJ (ed) Handbook of pain and palliative care: biobehavioral approaches for the life course. Springer, New York, pp 71–75

    Google Scholar 

  10. Kwom JH (2014) Overcoming barriers in cancer pain management. J Clin Oncol 32:1727–1733. https://doi.org/10.1200/JCO.2013.52.4827

    Article  Google Scholar 

  11. Merriman A, Harding R (2010) Pain control in the African context: the Ugandan introduction of affordable morphine to relieve suffering at the end of life. Philos Ethics Humanit Med 5:10. https://doi.org/10.1186/1747-5341-5-10

    Article  PubMed  PubMed Central  Google Scholar 

  12. Luckett T, Davidson PM, Green A, Boyle F, Stubbs J, Lovell M (2013) Assessment and management of adult cancer pain: a systematic review and synthesis of recent qualitative studies aimed at developing insights for managing barriers and optimizing facilitators within comprehensive framework of patient care. J Pain Symptom Manag 46:229–253. https://doi.org/10.1016/j.jpainsymman.2012.07.021

    Article  Google Scholar 

  13. Swarm R, Abernethy AP, Anghelescu DL, Benedetti C, Blinderman CD, Boston B, Cleeland C, Coyle N, Deleon-Casasola OA, Eilers JG, Ferrell B, Janjan NA, Karver SB, Levy MH, Lynch M, Moryl N, Murphy BA, Nesbit SA, Oakes L, Obbens EA, Paice JA, Rabow MW, Syrjala KL, Urba S, Weinstein SM, NCCN Adult Cancer Pain (2010) Adult cancer pain. J Natl Compr Cancer Netw 8:1046–1086. https://doi.org/10.6004/jnccn.2010.0076

    Article  Google Scholar 

  14. Gordon DB, Dahl JL, Miaskowski C, McCarberg B, Todd KH, Paice JA, Lipman AG, Bookbinder M, Sanders SH, Turk DC, Carr DB (2005) American pain society recommendations for improving the quality of acute and cancer pain management: American pain society quality of care task force. Arch Intern Med 165:1574–1580. https://doi.org/10.1001/archinte.165.14.1574

    Article  PubMed  Google Scholar 

  15. Muliira JK, Kizza IB, Nakitende G (2013) Roles of family caregivers and perceived burden when caring for hospitalized adult cancer patients: perspective from a low income country. Cancer Nursing. https://doi.org/10.1097/NCC.0000000000000591

  16. Kelley M, Demiris G, Nguyen H, Oliver DP, Wittenberg-Lyles E (2013) Informal hospice caregiver pain management concerns: a qualitative study. Palliat Med 27:673–683. https://doi.org/10.1177/0269216313483660

    Article  PubMed  PubMed Central  Google Scholar 

  17. Mehta A, Cohen SR, Carnevale FA, Ezer H, Ducharme F (2010) Family caregivers of palliative cancer patients at home: the puzzle of pain management. J Palliat Care 26:184–193

    Article  PubMed  Google Scholar 

  18. Meeker MA, Finnell D, Othman AK (2011) Family caregivers and cancer pain management: a review. J Fam Nurs 17:29–60. https://doi.org/10.1177/1074840710396091

    Article  PubMed  Google Scholar 

  19. Given BA, Given CW, Sherwood P (2012) The challenge of quality cancer care for family caregivers. Semin Oncol Nurs 28:205–212. https://doi.org/10.1016/j.soncn.2012.09.002

    Article  PubMed  Google Scholar 

  20. Oliver DP, Demiris G, Wittenberg-Lyles E, Porock D, Collier J, Arthur A (2010) Caregiver participation in hospice interdisciplinary team meetings via videophone technology: a pilot study for pain management. Am J Hosp Palliat Med 27:465–473. https://doi.org/10.1177/1049909110362402

    Article  Google Scholar 

  21. Robinson CA, Pesut B, Bottorff JL (2012) Supporting rural family palliative caregivers. J Fam Nurs 18:467–490. https://doi.org/10.1177/1074840712462065

    Article  PubMed  Google Scholar 

  22. Okuku F, Omoding A, Walusansa V, Origa M, Mutungi G, Orem J (2013) Infection- related cancers in sub-Saharan Africa: a paradigm for cancer prevention and control. Oncology 84(2):75–80

    Article  PubMed  Google Scholar 

  23. Hospice Africa Uganda (2013) Annual report. https://www.hospice_africa_uganda_annual_report_2013.pdf. Accessed on 25th Dec 2014

  24. Ferrell B, Rhinner M, Rivera LM (1993) Development and evaluation of the family pain questionnaire. J Psychosoc Oncol 10:21–35. https://doi.org/10.1300/J077V10N04_02

    Article  Google Scholar 

  25. Anderson KO, Dowds BN, Pelletz RE, Edwards WT, Peeters-Asdourian C (1995) Development and initial validation of a scale to measure self-efficacy beliefs in patients with chronic pain. Pain 63:77–83. https://doi.org/10.1016/0304-3959(95)00021-J

    Article  CAS  PubMed  Google Scholar 

  26. Given CW, Given B, Stommel M, Collins C, King S, Franklin S (1992) The caregiver reaction assessment (CRA) for caregivers to persons with chronic physical and mental impairments. Res Nurs Health 15:271–283. https://doi.org/10.1002/nur.4770150406

    Article  CAS  PubMed  Google Scholar 

  27. Katz S, Downs TD, Cash HR, Grotz RC (1970) Progress with development of the index of ADL. Gerontologist 10:20–30. https://doi.org/10.1093/geront/10.1_Part_1.20

    Article  CAS  Google Scholar 

  28. Waltz FC, Strickland OL, Lenz RE (2010) Measurement in nursing and Health Research, 4th edn. Springer, New York

    Google Scholar 

  29. Ferrell BR, Grant M, Borneman T, Juarez G, Veer AT (1999) Family caregiving in cancer pain management. J Palliat Med 2:185–195. https://doi.org/10.1089/jpm.1999.2.185

    Article  CAS  PubMed  Google Scholar 

  30. Campbell LC, Keefe FJ, McKee DC et al (2004) Prostate cancer in African Americans: relationship of patient and partner self-efficacy to quality of life. J Pain Symptom Manag 28:433–444. https://doi.org/10.1016/j.jpainsymman.2004.02.020

    Article  Google Scholar 

  31. Porter LS, Keefe FJ, Garst J, McBride CM, Baucom D (2008) Self-efficacy for managing pain, symptoms, and function in patients with lung cancer and their informal caregivers: associations with symptoms and distress. Pain 137:306 – 315. https://doi.org/10.1016/j.pain.2007.09.010

  32. Nijboer C, Triemstra M, Tempelaar R, Sanderman R, van den Bos GAM (1999) Measuring both negative and positive reactions to giving care to patients: psychometric qualities of the caregiver reaction assessment. Soc Sci Med 48:1259–1269. https://doi.org/10.1016/S0277-9536(98)00426-2

    Article  CAS  PubMed  Google Scholar 

  33. Valeberg BT, Kolstad E, Smastuen MC, Miaskowski C, Rustoen T (2013) The PRO-SELF pain control program improves family caregivers’ knowledge of cancer pain management. Cancer Nurs 36:429–435. https://doi.org/10.1097/NCC.0b013e3182747bcf

    Article  PubMed  Google Scholar 

  34. Chi NC, Demiris G (2017) Family caregivers’ pain management in end-of-life care: systematic review. Am J Hosp Palliat Med 34:470–485. https://doi.org/10.1177/1049909116637359

    Article  Google Scholar 

  35. Lee BO, Lui Y, Wang YH et al (2015) Mediating effect of family caregivers’ hesitancy to use analgesics on homecare cancer patients’ analgesic adherence. J Pain Symptom Manag 50:814–821. https://doi.org/10.1016/j.jpainsymman.2015.06.014

    Article  Google Scholar 

  36. Fletcher BS, Miaskowski C, Given B, Schumacher K (2012) The cancer family caregiving experience: an updated and expanded conceptual model. Eur J Oncol Nurs 16:387–398. https://doi.org/10.1016/j.ejon.2011.09.001

    Article  PubMed  Google Scholar 

  37. Methta A, Chan LS, Cohen SR (2014) Flying blind: sources of distress for family caregivers of palliative cancer patients managing pain at home. J Psychosoc Oncol 32:94–111. https://doi.org/10.1080/07347332.2013.856057

    Article  Google Scholar 

  38. Bandura A (1998) Health promotion from the perspective of social cognitive theory. Psychol Health 13:623–649. https://doi.org/10.1080/08870449808407422

    Article  Google Scholar 

  39. Steffen AM, McKibbin C, Zeiss AM, Gallagher- Thompson D, Bandura A (2002) The revised scale for caregiving self-efficacy reliability and validity studies. J Gerontol B Psychol Sci Soc Sci 57:P74–P86. https://doi.org/10.1093/geronb/57.1.P74

    Article  PubMed  Google Scholar 

  40. Hendrix CC, Landerman R, Abernethy AP (2013) Effects of an individualised caregiver training intervention on self-efficacy of cancer caregivers, West J Nurs Res. 35:590–610. https://doi.org/10.1177/0193945911420742

  41. Hendrix CC, Bailey DE Jr, Steinhauser KE et al (2016) Effects of enhanced caregiver training program on cancer caregiver’s self-efficacy, preparedness, and psychological well-being. Support Care Cancer 24:327–336. https://doi.org/10.1007/s00520-015-2797-3

    Article  PubMed  Google Scholar 

  42. Wadhwa D, Burman D, Swami N, Rodin G, Lo C, Zimmermann C (2013) Quality of life and mental health in caregivers of outpatients with advanced cancer. Psychooncology 22:403–410. https://doi.org/10.1002/pon.2104

    Article  PubMed  Google Scholar 

  43. Keefe FJ, Ahles TA, Sutton L et al (2005) Partner guided cancer pain management at the end-of-life: a preliminary study. J Pain Symptom Manage 29:263–273. https://doi.org/10.1016/j.jpainsymman.2004.06.014

    Article  PubMed  Google Scholar 

  44. Kershaw T, Ellis KR, Yoon H, Schafenacker A, Katapodi M, Northouse L (2015) The interdependence of advanced cancer patients’ and their family caregivers’ mental health, physical health, and self-efficacy over time. Ann Behav Med 49:901–911. https://doi.org/10.1007/s12160-015-9743-y

    Article  PubMed  PubMed Central  Google Scholar 

  45. Deshields TL, Rihanek A, Potter P, Zhang Q, Kuhrik M, Kuhrik N, O’Neill JA (2012) Psychosocial aspects of caregiving: perceptions of cancer patients and family caregivers. Support Care Cancer 20:349–356. https://doi.org/10.1007/s00520-011-1092-1

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

The research did not receive any financial support. The FCGs of ACPs as well as the staff of UCI and HAU are appreciated for the support and contribution to the study. We wish to acknowledge Professors; M Grant, B Ferrell, B Given, Dorothy Luckie and Laura S. Porter for their permission to use the study tools.

Availability of data and materials

The datasets supporting the conclusions of this article are included within the article.

Funding

The study did not receive any funding.

Author information

Authors and Affiliations

Authors

Contributions

IBK wrote the concept of the study. All authors participated in designing the study, data analysis and drafting of the manuscript and approved the final manuscript.

Corresponding author

Correspondence to Irene Betty Kizza.

Ethics declarations

The study was approved by HAU, UCI (REO/AC/02) and the Uganda National Council of Science and Technology (SS4003). The participants provided written informed consent.

Conflict of interests

The authors declare that they have no conflict of interest. The authors have full control of the primary data and agree to allow the journal to review the data if requested.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Kizza, I.B., Maritz, J. Family caregivers for adult cancer patients: knowledge and self-efficacy for pain management in a resource-limited setting. Support Care Cancer 27, 2265–2274 (2019). https://doi.org/10.1007/s00520-018-4504-7

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-018-4504-7

Keywords

Navigation