Skip to main content
SpringerLink
Log in

Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers

  • Clinical Study
  • Published:
Journal of Neuro-Oncology Aims and scope Submit manuscript

Abstract

Introduction

Informal family caregivers (FCG) are an integral and crucial human component in the cancer care continuum. However, research and interventions to help alleviate documented anxiety and burden on this group is lacking. To address the absence of effective interventions, we developed the electronic Support Network Assessment Program (eSNAP) which aims to automate the capture and visualization of social support, an important target for overall FCG support. This study seeks to describe the preliminary efficacy and outcomes of the eSNAP intervention.

Methods

Forty FCGs were enrolled into a longitudinal, two-group randomized design to compare the eSNAP intervention in caregivers of patients with primary brain tumors against controls who did not receive the intervention. Participants were followed for six weeks with questionnaires to assess demographics, caregiver burden, anxiety, depression, and social support. Questionnaires given at baseline (T1) and then 3-weeks (T2), and 6-weeks (T3) post baseline questionnaire.

Results

FCGs reported high caregiver burden and distress at baseline, with burden remaining stable over the course of the study. The intervention group was significantly less depressed, but anxiety remained stable across groups.

Conclusions

With the lessons learned and feedback obtained from FCGs, this study is the first step to developing an effective social support intervention to support FCGs and healthcare providers in improving cancer care.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Rodakowski J et al (2012) Role of social support in predicting caregiver burden. Arch Phys Med Rehabilit 93(12):2229–2236

    Article  Google Scholar 

  2. Sherwood PR, Cwiklik M, Donovan HS (2016) Neuro-oncology family caregiving: review and directions for future research. CNS Oncol 5(1):41 – 8

    Article  PubMed  CAS  Google Scholar 

  3. Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 10(1):61–72

    Article  PubMed  PubMed Central  Google Scholar 

  4. Hricik A et al (2011) Changes in caregiver perceptions over time in response to providing care for a loved one with a primary malignant brain tumor. Oncol Nurs Forum 38(2):149 – 55

    Article  PubMed  Google Scholar 

  5. Burns CM et al (2013) Uncovering an invisible network of direct caregivers at the end of life: a population study. Palliat Med 27(7):608–615

    Article  PubMed  Google Scholar 

  6. Robison J et al (2009) A broader view of family caregiving: effects of caregiving and caregiver conditions on depressive symptoms, health, work, and social isolation. J Gerontol Ser 64(6):788–798

    Article  Google Scholar 

  7. Sherwood PR et al (2006) Predictors of distress in caregivers of persons with a primary malignant brain tumor. Res Nurs Health 29(2):105–120

    Article  PubMed  Google Scholar 

  8. Schmer C et al (2008) When a family member has a malignant brain tumor: the caregiver perspective. J Neurosci Nurs 40(2):78–84

    Article  PubMed  Google Scholar 

  9. Keating N, Eales J (2017) Social consequences of family care of adults: a scoping review. Int J Care Caring 1(2):153–173

    Article  Google Scholar 

  10. Applebaum AJ, Breitbart W (2012) Care for the cancer caregiver: a systematic review. Palliat Support Care 11(3):231–252

    Article  PubMed  PubMed Central  Google Scholar 

  11. Baron RS et al (1990) Social support and immune function among spouses of cancer patients. J Pers Soc Psychol 59(2):344 – 52

    Article  PubMed  CAS  Google Scholar 

  12. Newberry A et al (2012) Identifying family members who are likely to perceive benefits from providing care to a person with a primary malignant brain tumor. Oncol Nurs Forum 39(3):E226-32

    Article  PubMed  Google Scholar 

  13. Nabors N, Seacat J, Rosenthal M (2002) Predictors of caregiver burden following traumatic brain injury. Brain Inj 16(12):1039–1050

    Article  PubMed  Google Scholar 

  14. Northouse LL et al (2012) Psychosocial care for family caregivers of patients with cancer. J Clin Oncol 30(11):1227–1234

    Article  PubMed  Google Scholar 

  15. Rempel GR, Neufeld A, Kushner KE (2007) Interactive use of genograms and ecomaps in family caregiving research. J Family Nurs 13(4):403–419

    Google Scholar 

  16. Ray RA, Street AF (2005) Ecomapping: an innovative research tool for nurses. J Adv Nurs 50(5):545–552

    Article  Google Scholar 

  17. Boele FW et al (2017) Neuro-oncology family caregivers’ view on keeping track of care issues using eHealth systems: it’s a question of time. J Neuro-Oncol 134(1):157–167

    Article  Google Scholar 

  18. Carr D et al (2001) Psychological adjustment to sudden and anticipated spousal loss among older widowed persons. J Gerontol B Psychol Sci Soc Sci 56(4):S237–48

    Article  Google Scholar 

  19. Flynn FJ, Lake VK (2008) If you need help, just ask: underestimating compliance with direct requests for help. J Personal Soc Psychol 95(1):128

    Article  Google Scholar 

  20. Zebrack B et al (2016) Institutional capacity to provide psychosocial oncology support services: a report from the Association of Oncology Social Work. Cancer 122(12):1937–1945

    Article  PubMed  Google Scholar 

  21. Montgomery R et al (2002) Profiles of respite use. Home Health Care Serv Q 21(3–4):33–63

    Article  PubMed  Google Scholar 

  22. Cannuscio CC et al (2004) Employment status, social ties, and caregivers’ mental health. Soc Sci Med 58(7):1247–1256

    Article  PubMed  Google Scholar 

  23. Reblin M et al (2017) Development of the Electronic Social Network Assessment Program Using the Center for eHealth and Wellbeing Research Roadmap. JMIR Human Factors 4(3):e23

    Article  PubMed  PubMed Central  Google Scholar 

  24. Fekete J-D et al (2008) The value of information visualization. In: Kerren A et al, (eds) Information visualization: human-centered issues and perspectives. Springer, Berlin, pp 1–18

    Google Scholar 

  25. Reblin M et al (in press) Feasibility of implementing an electronic social support and resource visualization tool for caregivers in a neuro-oncology clinic. Suppor Care Cancer

  26. Zarit SH, Reever KE, Bach-Peterson J (1980) Relatives of the impaired elderly: correlates of feelings of burden. The Gerontologist 20(6):649–655

    Article  PubMed  CAS  Google Scholar 

  27. Bédard M et al (2001) The Zarit Burden Interview: A New Short Version and Screening Version. The Gerontologist 41(5):652–657

    Article  PubMed  Google Scholar 

  28. Higginson IJ et al (2010) Short-form Zarit Caregiver Burden Interviews were valid in advanced conditions. J Clin Epidemiol 63(5):535–542

    Article  PubMed  Google Scholar 

  29. Gaugler JE et al (2010) Clinically significant changes in burden and depression among dementia caregivers following nursing home admission. BMC Med 8:85

    Article  PubMed  PubMed Central  Google Scholar 

  30. Grunfeld E et al (2004) Family caregiver burden: results of a longitudinal study of breast cancer patients and their principal caregivers. CMAJ: Can Med Assoc J 170(12):1795–1801

    Article  Google Scholar 

  31. Schulz R, Beach SR (1999) Caregiving as a risk factor for mortality: the caregiver health effects study. JAMA 282(23):2215–2219

    Article  PubMed  CAS  Google Scholar 

  32. Zigmond AS, Snaith RP (1983) The hospital anxiety and depression scale. Acta Psychiatr Scand 67(6):361–370

    Article  PubMed  CAS  Google Scholar 

  33. Bjelland I et al (2002) The validity of the Hospital Anxiety and Depression Scale: an updated literature review. J Psychosom Res 52(2):69–77

    Article  PubMed  Google Scholar 

  34. Hinz A,. Psychotherapie (2009) et al Measurement of change with the Hospital Anxiety and Depression Scale (HADS): sensitivity and reliability of change. Psychosom Med Psychol 59(11):394–400

    Article  Google Scholar 

  35. Reblin M et al (2017) Mediating burden and stress over time: caregivers of patients with primary brain tumor. Psychooncology 27(2):607–612

    Google Scholar 

  36. Northouse LL et al (2013) Randomized clinical trial of a brief and extensive dyadic intervention for advanced cancer patients and their family caregivers. Psycho-oncology 22(3):555–563

    Article  PubMed  Google Scholar 

  37. Northouse LL et al (2010) Interventions with family caregivers of cancer patients: meta-analysis of randomized trials. CA: A Cancer J Clin 60(5): 317–339

    Google Scholar 

  38. Matcham F et al (2014) Self-help interventions for symptoms of depression, anxiety and psychological distress in patients with physical illnesses: a systematic review and meta-analysis. Clin Psychol Rev 34(2):141–157

    Article  PubMed  CAS  Google Scholar 

  39. Beatty LJ et al (2010) A randomised controlled trial to evaluate the effects of a self-help workbook intervention on distress, coping and quality of life after breast cancer diagnosis. Med J Aust 193(5):S68

    PubMed  Google Scholar 

  40. Allison PJ et al (2004) Results of a feasibility study for a psycho-educational intervention in head and neck cancer. Psycho-Oncology 13(7):482–485

    Article  PubMed  CAS  Google Scholar 

  41. McMillan SC et al (2006) Impact of coping skills intervention with family caregivers of hospice patients with cancer. Cancer 106(1):214–222

    Article  PubMed  Google Scholar 

  42. Whelan J et al (2014) Cochrane update: predicting sustainability of intervention effects in public health evidence: identifying key elements to provide guidance. J Public Health 36(2):347–351

    Article  Google Scholar 

  43. Marteau TM et al (2011) Judging nudging: can nudging improve population health? BMJ: Br Med J (Online) 342:d228

    Article  Google Scholar 

  44. Ownsworth T, Goadby E, Chambers SK (2015) Support after brain tumor means different things: family caregivers’ experiences of support and relationship changes. Front Oncol 5:33

    PubMed  PubMed Central  Google Scholar 

  45. Cornwell P et al (2012) Care and support needs of patients and carers early post-discharge following treatment for non-malignant brain tumour: establishing a new reality. Support Care Cancer 20(10):2595–2610

    Article  PubMed  Google Scholar 

  46. Halkett G et al (2017) Do carer’s levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress? Support Care Cancer 26(1):275–286

  47. Halkett G et al (2010) The information and support needs of patients diagnosed with High Grade Glioma. Patient Educ Couns 79(1):112–119

    Article  PubMed  Google Scholar 

  48. Helgeson VS (2003) Social support and quality of life. Qual Life Res 12:25–31

    Article  PubMed  Google Scholar 

  49. Applebaum AJ et al (2016) Existential distress among caregivers of patients with brain tumors: a review of the literature. Neuro-Oncol Pract 3(4):232–244

    Article  Google Scholar 

  50. Talley A et al (2010) The influence of breast cancer survivors’ perceived partner social support and need satisfaction on depressive symptoms: a longitudinal analysis. Psychol Health 25(4):433–449

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Research reported in this publication was supported by the American Cancer Society under Award Number ACS MRSG 13-234-01-PCSM (PI Reblin), the National Cancer Institute of the National Institutes of Health under award numbers R03CA201684-01 (PI Reblin) and K07CA196985 (PI Wu). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding institutions. The authors would like to thank the participants who made this research possible.

Author information

Authors and Affiliations

  1. Moffitt Cancer Center, 12902 Magnolia Dr., Tampa, FL, USA

    Maija Reblin, Dana Ketcher & Peter Forsyth

  2. University of Utah, Salt Lake City, UT, USA

    Eduardo Mendivil, Lauren Kane, Justin Pok, Miriah Meyer, Yelena P. Wu & Jim Agutter

  3. Hunstman Cancer Institute, Salt Lake City, UT, USA

    Yelena P. Wu

Authors
  1. Maija Reblin
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Dana Ketcher
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Peter Forsyth
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Eduardo Mendivil
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Lauren Kane
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Justin Pok
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Miriah Meyer
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Yelena P. Wu
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Jim Agutter
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Maija Reblin.

Ethics declarations

Conflict of interest

All authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Reblin, M., Ketcher, D., Forsyth, P. et al. Outcomes of an electronic social network intervention with neuro-oncology patient family caregivers. J Neurooncol 139, 643–649 (2018). https://doi.org/10.1007/s11060-018-2909-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11060-018-2909-2

Keywords

Search

Navigation