Journal of Neuro-Oncology
Outcomes of an electronic social network intervention with neuro-
oncology patient family caregivers
· Dana Ketcher
· Peter Forsyth
· Eduardo Mendivil
· Lauren Kane
· Justin Pok
· Yelena P. Wu
· Jim Agutter
Received: 3 April 2018 / Accepted: 19 May 2018
© Springer Science+Business Media, LLC, part of Springer Nature 2018
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.
Keywords Social network · Family caregivers · Social support · Intervention
Informal family caregivers (FCGs) provide physical care and
emotional support to patients and are an integral part of the
health care team . However, while there is ample research
that has focused on neuro-oncology patients, less research
has concentrated on the FCG solely . Many cancer FCGs
report feeling unprepared and overwhelmed by their role
, with anxiety, fear, and insecurity invading their every-
day lives . These feelings of burden have been shown to
adversely impact caregiver quality of life, psychological and
physical health [5, 6].
Those caring for patients with primary malignant brain
tumor (PMBT) may be especially at risk for high burden
due to the rapid progression of disease, signiﬁcant physical
debilitation, cognitive decline, and personality and behavior
changes associated PMBT [3, 7, 8]. Despite the recogni-
tion of these complications, there has been little prospective
systematic longitudinal research with caregivers of patients
with PMBT [2, 9]. The majority of work has been qualita-
tive or descriptive with few interventions designed for or
tested within the population of neuro-oncology caregivers
[2, 10]. These intervention studies have focused on areas
such as psychoeducation, problem-solving/skills building,
complementary and alternative medicine, and various thera-
pies focused on the interpersonal, family/couples, and exis-
tential, with the greatest beneﬁts observed in those that were
structured and goal-oriented .
Recognizing the challenges FCG face, where can assis-
tance be introduced or strengthened during the daily chal-
lenges of caregiving? Social support is a key area that, when
utilized eﬀectively, can help alleviate FCG burden and the
* Maija Reblin
Moﬃtt Cancer Center, 12902 Magnolia Dr., Tampa, FL,
University of Utah, Salt Lake City, UT, USA
Hunstman Cancer Institute, Salt Lake City, UT, USA