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Family Interventions To Improve Diabetes Outcomes For Adults PDF
Family Interventions To Improve Diabetes Outcomes For Adults PDF
ISSN 0077-8923
A N N A L S O F T H E N E W Y O R K A C A D E M Y O F SC I E N C E S
Issue: The Year in Diabetes and Obesity
Address for correspondence: Arshiya A. Baig, M.D., M.P.H., Section of General Internal Medicine, University of Chicago,
5841 S. Maryland Ave. MC 2007, Chicago, IL 60637. [email protected]
Diabetes self-care is a critical aspect of disease management for adults with diabetes. Since family members can
play a vital role in a patient’s disease management, involving them in self-care interventions may positively influence
patients’ diabetes outcomes. We systematically reviewed family-based interventions for adults with diabetes published
from 1994 to 2014 and assessed their impact on patients’ diabetes outcomes and the extent of family involvement. We
found 26 studies describing family-based diabetes interventions for adults. Interventions were conducted across a
range of patient populations and settings. The degree of family involvement varied across studies. We found evidence
for improvement in patients’ self-efficacy, perceived social support, diabetes knowledge, and diabetes self-care across
the studies. Owing to the heterogeneity of the study designs, types of interventions, reporting of outcomes, and
family involvement, it is difficult to determine how family participation in diabetes interventions may affect patients’
clinical outcomes. Future studies should clearly describe the role of family in the intervention, assess quality and
extent of family participation, and compare patient outcomes with and without family involvement.
doi: 10.1111/nyas.12844
Ann. N.Y. Acad. Sci. 1353 (2015) 89–112
C 2015 New York Academy of Sciences. 89
Family interventions to improve diabetes outcomes for adults Baig et al.
of disease management. They can provide many 2 diabetes, participants have reported that fam-
forms of support, such as instrumental support in ily members’ non-supportive behaviors were asso-
driving patients to appointments or helping inject ciated with being less adherent to one’s diabetes
insulin and social and emotional support in help- medication regimen and with having poorer glu-
ing patients cope with their disease12,13 . Through cose control24–26 . Family members may sabotage or
their communications and attitudes, family mem- undermine patients’ self-care efforts by planning
bers often have a significant impact on a patient’s unhealthy meals, tempting patients to eat unhealthy
psychological well-being, decision to follow recom- foods, or questioning the need for medications25,27 .
mendations for medical treatment, and ability to Family members may also nag or argue with patients
initiate and maintain changes in diet and exercise14 . in an attempt to support adherence25,28 . One study
Among middle-aged and older adults with type found that pressure from a spouse regarding a
2 diabetes, social support has been found to be patient’s diet is associated with higher diabetes-
associated with improved self-reported health in specific distress among adults with type 2 diabetes29 .
long-term follow-up15 . Family cohesion and fam- A family’s obstructive behaviors may be more harm-
ily functioning have also been found to be posi- ful among adults with limited health literacy and
tively related to patients’ self-care behaviors and to patients who are experiencing other stressors or
improvements in blood glucose control16–19 . major depressive symptoms26,30 . Hence, diabetes
Providing diabetes education to just the individ- self-management interventions should focus not
ual with type 2 diabetes could limit its impact on only on the individual patient, but also on the fam-
patients, since family may play such a large role in ily members, so that they are better equipped to
disease management. Family-based approaches to positively support their loved one with diabetes25 .
chronic disease management emphasize the context
in which the disease occurs, including the family’s Supporting family
physical environment, as well as the educational, Diabetes self-management interventions may need
relational, and personal needs of patients and family to place greater emphasis on targeting family mem-
members12,20 . Including family members in educa- bers’ communication skills and teaching them pos-
tional interventions may provide support to patients itive ways to influence patient health behaviors31 .
with diabetes, help to develop healthy family behav- Family members can feel distressed by their loved
iors, and promote diabetes self-management21 . one’s diabetes28,32–34 due to limited knowledge
about diabetes or not knowing how to support their
The negative ways family can affect diabetes loved one12,27,35–37 . Family may also have miscon-
Patients’ family and friends can provide support ceptions, such as believing the patient knows more
in overcoming barriers in executing diabetes self- about diabetes than the patient actually reports
management, but behaviors of family members or not understanding their loved one’s needs in
also have the potential to be harmful22 . How the diabetes management27,38 . Knowledge about the
family is structured and its beliefs and problem- disease, strategies to alter family routines, and opti-
solving skills or lack thereof can exacerbate the mal ways to cope with the emotional aspects of
stresses associated with disease management12 . The the disease are some of the aspects of diabetes self-
lifestyle changes required for optimal diabetes self- management that family members need39 . Educat-
management often conflict with established family ing family members about diabetes-care needs can
routines23 . Self-management tasks may necessitate help ease this strain by explaining why these changes
changing the types of food prepared and con- are necessary, how these changes can best be imple-
sumed in the home, time away from work for mented, and where to find additional information,
the family member to attend medical visits with such as healthy recipes or exercise routines24 . Effec-
the patient, and reprioritization of family finances, tive family management can also reduce the strain
all which may affect family routines. Since family that family members may experience when cop-
members participate in purchasing groceries, creat- ing with altered lifestyles and disease progression24 .
ing family schedules, and cooking meals, they can It is important to provide family members with
help or hinder necessary lifestyle changes for peo- information about the illness and possible treat-
ple with diabetes22 . In studies of adults with type ment options, validate their experiences as providers
increasing social support from family and friends approach recognizes the interdependence of part-
have shown varying results64–66 . ners, and that their interaction affects them both,
rather than simply the behavior of one affecting the
Conceptual framework
other70 .
We found several published conceptual frameworks
Objective
that describe the theoretical underpinnings of a
family-based diabetes intervention for adults. Considering that adults with diabetes depend on the
The Institute for Patient- and Family-Centered support of family for assistance in managing their
Care provides guidance on the major concepts diabetes, examining family-based interventions for
underlying patient- and family-centered care across adults with diabetes is important in understanding
health conditions7 . In family- and patient-centered how to strengthen current diabetes self-care pro-
care, healthcare providers respect, listen to, and grams. In the past decade, several studies have tested
honor patient and family perspectives and choices7 . family-based interventions among adults with dia-
Patient and family knowledge, values, beliefs, and betes. We systematically reviewed published family-
cultural backgrounds must be incorporated into the based interventions for adults with diabetes from
planning and delivery of care. Patients and families the years 1994–2014, assessed the level of family
require timely, complete, and accurate information participation, and considered how this involvement
in order to effectively participate in care and deci- affected the patients’ outcomes.
sion making. Moreover, patients and families are
Methods
encouraged and supported in participating in care
and decision making7 . Key strategies in mobiliz- We searched for family-based diabetes self-
ing family support for patients with chronic health management intervention articles published from
conditions may include guiding family members to January 1994 to October 2014 using the elec-
set goals for supporting patient self-care behaviors, tronic databases PubMed, CINAHL, and PsycINFO.
training family members in supportive commu- We used prespecified Medical Subject Headings
nication techniques, and giving families the tools (MeSH) and keywords to identify evaluation stud-
and infrastructure to assist in monitoring clinical ies (Evaluation, Effectiveness, Improvement, Con-
symptoms35,59 . trolled clinical trial, Randomized, Randomized con-
In terms of interventions for patients with dia- trolled trials) that were designed to test diabetes
betes, others have described frameworks for the self-management interventions (Intervention, Edu-
inclusion of family in health interventions12,67,68 . cation, Self-management, Self-care, Problem solv-
Clinical interventions may be most effective when ing, Program, Social support), were family-based
characteristics of patients that affect disease out- (Family, Couple, Significant others, Spouse, Rela-
comes are integrated with perspectives of the family tionship, Relatives, Caregiver, Partner), and targeted
context12 . The family provides the arena in which adults with diabetes (Diabetes mellitus, Diabetes
the patient, family member stress or support, and mellitus, type 2). Appendix S1 describes in fur-
healthcare factors intersect, providing an ideal locus ther detail the search terms used in the database
for meaningful intervention12 . Interventions must searches. We supplemented our electronic database
address how the family is structured, how the family search with a hand search of issues from selected
solves problems, and how family members manage journals with a high likelihood of publishing dia-
emotions. Interventions must also address patients’ betes self-management intervention studies (Dia-
and family members’ beliefs and expectations, fam- betes Care and The Diabetes Educator). We also
ily stresses, and allocation of the responsibilities hand searched related articles and references cited in
of disease management. Other frameworks stress previously published systematic reviews of family-
the importance of biculturalism and integrating based interventions20,31,40,52,57,60,65,71–73 .
cultural knowledge, skills, practices, and identi- To be included in our review, a study must have
ties into diabetes self-management interventions for been conducted in the United States, be published
racial/ethnic minorities69 . Furthermore, couples- in English or Spanish, and be focused on improv-
based interventions ought to address the behav- ing diabetes treatment processes and patients’ out-
iors, feelings, and thoughts of both partners68 . This comes. We included all study types in our review
(e.g., randomized controlled trials, prepost, and nature of interventions, we included only studies
pilot) that met our inclusion criteria. We excluded that described the role and activities of family mem-
studies that focused solely on diabetes prevention or bers in the intervention, provided a qualitative or
targeted patients under the age of 19 or women with quantitative assessment of outcomes related to fam-
gestational diabetes. If studies included patients ilies, or reported outcomes associated with family
with other chronic conditions other than diabetes members’ participation. We excluded studies that
or included patients at risk for diabetes in addition did not provide details in their background, meth-
to patients with diabetes, we included only those ods, results, or discussion sections regarding the role
studies that reported results of subgroup analyses and activities of family members in the intervention
conducted with the subsample of diabetic patients. or outcomes related to family involvement. Cre-
We excluded studies that only reported outcomes ated using PRISMA guidelines, our literature-search
aggregated across patients and family members that flowchart is depicted in Fig. 174 .
made it difficult to interpret the impact of the pro-
gram on index patients with diabetes. Data abstraction
From the PubMed, CINAHL, and PsycINFO We used a validated instrument to guide our
database searches, we identified 2340 unique arti- abstraction75 . We abstracted data from each study
cles. Three co-authors (AAB, AB, and MTQ) inde- into a table (Appendix S2) that included the objec-
pendently reviewed the titles and abstracts of the tive of the study, the setting, the study design, the
first 10% of articles (234 articles) identified through population sampled, a description of the interven-
the database searches to determine whether arti- tion, and patient outcomes reported. Each study in
cles met inclusion or exclusion criteria. We subse- the table was given a quality score by two mem-
quently met to discuss discrepancies and to reach bers of the research team using an adapted ques-
consensus. We repeated independent review of the tionnaire based on the Downs and Black guidelines
titles and abstracts of the next 10% of articles two (27-point scale: 0 worst, 27 best)76 . The Downs and
more times until we reached a greater than 0.60, Black questionnaire is a valid and reliable checklist
which indicated moderate to substantial agreement that assesses both randomized and non-randomized
among reviewers. The remaining titles were then studies, provides an overall score of study quality,
divided among the three co-authors to indepen- and includes five subscales that measure quality of
dently review. The title and abstract review yielded reporting, external validity, bias, confounding, and
a total of 200 articles in need of full text review to power76 . We report the average of the two qual-
determine their inclusion or exclusion in the sys- ity scores. We abstracted data into a separate table
tematic review. (Table 1) to describe how the study defined family,
Once we had established an adequate , one co- how family was involved, the level of family partici-
author (AB) completed a title and abstract review pation in the intervention, and any outcomes related
of the 2010–2014 issues of Diabetes Care and 2009– to family involvement.
2014 issues of The Diabetes Educator. Through the Results
hand search, 76 additional articles were identi- We identified 26 unique studies described in 46 arti-
fied that were in need of full text review. Hand cles that used family-based interventions to address
searches of reference lists of relevant articles identi- diabetes self-management and outcomes among
fied through the database and journal hand searches adults with diabetes. These studies are described in
yielded an additional 28 articles in need of full text detail in Appendix S2.
review.
We then divided the 304 articles from the database Study design
and hand searches between three co-authors (AAB, Of the 26 studies, 13 used a randomized controlled
AB, MTQ) and independently reviewed the full trial (RCT) study design77–101 and 11 used a prepost
text of the selected articles. During the full text design21,50,102–113 . One study assigned individuals
review, we noted that many studies mentioned fam- to one of three arms based on their commu-
ily involvement in the interventions but lacked detail nity of residence114 . Another study reported
on how the family was involved in the study pro- only postintervention measures115 . Participa-
cedures. Since our focus was on the family-based tion and follow-up rates were high for many
Figure 1. Literature search flowchart. *Several articles were excluded for more than one reason, so numbers do not add up to 258.
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
Samuel-Hodge Family members and One intervention focus was on Not reported None reported 21.5
(2006)95 friends organizing education around the
Samuel-Hodge “church family,” which included
(2009)96 congregants, family, and friends.
This focus was viewed as one way to
deliver the intervention in a
culturally appropriate and sensitive
manner. Family members were
included as study participants and
family and friends were invited as
guests to group sessions.
Vincent (2007)97 Support person; Participants were encouraged to bring Not reported In postintervention 21
Vincent (2009)98 family member a support person to the 8 weekly 2-h focus groups,
group sessions since support from participants
friends and family has been shown reported they and
to improve glycemic control. their families
Inclusion of cultural content benefited from the
included addressing family issues. intervention.
Additionally, participants were given “Benefit to
low literacy, Spanish-language families” was one
materials to share with their family of only two major
members. The cultural concept of themes identified
familismo (family support and in the focus group
cohesiveness) and the importance of data. Family
family support to facilitate lifestyle benefited from
changes needed for diabetes healthier eating
self-management was the basis for and became more
including family in the intervention. supportive of
participants’
lifestyle changes.
Toobert (2010)84 Family members The social support group component Not reported Family support had 21
Toobert taught participants how to problem an effect on
(2011a)83 solve and how to mobilize social increases in
Toobert support among family and friends. physical activity
(2011b)85 The intervention also included a (PA) even after
Osuna (2011)120 “Family Night” where family accounting for the
Barrera (2014)86 members could join participants effects of group
during the social support group support. Study
portion of the meeting, hear an authors suggested
overview of ¡Viva Bien! activities, the finding might
celebrate the diabetes participants’ be attributed to
achievements, and exchange the involvement of
questions and answers. Family family in the
nights were viewed as vehicles for intervention and
increasing the families’ support for dedicating sessions
participants’ intervention to the
engagement. Families were also mobilization of
invited to a final celebratory family and friend
meeting. The involvement of family support.
was viewed as being consistent with
the Latino cultural value of
familismo.
Aikens (2014a)109 Family member or Patients received weekly interactive 39% of patients Rates of engagement 21
Aikens close friend living voice response (IVR) calls to assess participated with were higher
(2014b)110 outside the health status and self-care and to an informal among patients
patient’s home provide tailored, prerecorded caregiver; based on enrolling with an
(informal support messages. Patients could opt patients’ feedback informal caregiver
caregiver); to be to designate one family member or at baseline, the (87.7% of
eligible, informal close friend to receive emailed lack of caregiver assessments
caregivers needed summaries of each completed call involvement was completed versus
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
to be ࣙ18 years along with structured suggestions usually due to 81.6% for those
old, have no for supporting the patient’s DSM. personal not participating
history of Participating caregivers preference and not with an informal
cognitive or severe underwent DVD-based training unavailability of a caregiver, P =
psychiatric on communicating effectively with person to play this 0.008). Patients
impairment, and the patient and any in-home role. Caregiver who participated
have access to caregiver that may be involved. participation was with an informal
email. Intervention strategies were based significantly more caregiver were less
upon the assumption that likely among likely to report
patients, informal caregivers, and patients with frequent high
healthcare teams can use frequent lower income and glucose levels
information updates about the lower health (P = 0.021) and
patient’s health and self-care to literacy levels. more likely to
promptly identify emerging regularly check
problems and improve illness their blood
self-management. One of the pressure (BP)
overall goals of the intervention (P = 0.017) than
was to generate guidance on DSM those patients not
support for patients’ informal participating with
caregivers via structured emails. an informal
caregiver.
Kim (2009)99 Family members During the educational program, Not reported None reported 20.5
Song (2010)100 study participants, their family
members, CHWs, and diabetes
educators actively engaged in
group education in a synergistic
manner. The program recognized
the traditional Korean cultural
values of close familial
interdependence and social
relationships. The researchers
encouraged the active involvement
of other family members in the
group education to create a
synergistic group interaction while
building an environment
promoting family and social
support. This strategy was
intended to enhance the deep
cultural tailoring of the
intervention by supporting the
social/environmental forces
influencing health behavior.
Brown (2002)91 A family member, Subjects were required to identify a Not reported None reported 20
Brown (2005)92 preferably a spouse family member or close friend to
Brown (2013)90 or first-degree participate with them in the
relative, who intervention as a support person.
would participate Family/friends were invited to
as a support attend 12 weekly education
person. If a family meetings and 14 biweekly support
member was not group meetings to talk about DSM
available, a close problems and the impact of
friend diabetes on the family. Social
participated. support was fostered through
family members and friends, as
well as other group participants
and intervention leaders. Group
leaders emphasized support from
family members and encouraged
support persons to improve their
health habits.
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
Two Feathers Family members; Kieffer (2004) reports preliminary Not reported Postintervention, 20
(2005)103 family member or focus group findings that identified patients with
Two Feathers friend the importance of family support for diabetes reported
(2007)107 DSM and led to the inclusion of they were
Kieffer (2004)119 family members in the intervention encouraging their
and family and social support being family members to
a key characteristic of the eat healthier meals
intervention. Participants were and to exercise
encouraged to bring a family with them.
member or friend to group diabetes
self-management education (DSME)
meetings. The Family Health
Advocates worked with patients with
diabetes and their family members,
providing them group DSME
classes, case management and
referral services. Role-playing was
used to improve communication
with family members about DSM.
Utz (2008)88 Supportive family Supportive family and/or friends were 6 family members Several of the 20
Jones (2008)89 and/or friends invited to selected group sessions to and friends (1 participating
obtain information about diabetes mother, 1 adult support persons
and family/peer support. During son, 2 friends, 1 expressed that
one of the sessions, family members adult daughter, they appreciated
and friends were given a “Helpful and 1 wife) came the opportunity to
Hints for Family Members” to the invited attend one session
guideline developed by two of the sessions. with their loved
study’s authors about how to be one to understand
supportive to the person with diabetes better.
diabetes. Along with the guideline,
the family member or friend had an
opportunity to view three videos
about family communication
around diabetes. The facilitator also
guided a discussion during which
time family members could ask
questions and share their
experiences and the participants
could discuss how interactions
between those with diabetes and
their family members/ friends
affected DSM. Family and friends
were also invited to participate in a
cooking demonstration by a dietitian
to show how to cook healthy meals
that are easy and taste good.
Castejón Either a family The support person was asked to come 67% of control and None reported 19.5
(2014)101 member or a with the study participant for every 79% of the
friend clinical screening and educational intervention
Attending partners session, when available. Both the group patients had
were a spouse, participant and support person a partner attend at
friend, sibling, or received a physical assessment at the baseline; 42% of
child clinical screenings, including a controls and 33%
recording of weight, height, waist of the intervention
circumference, body mass index group had
(BMI), and BP. Participants were partners at both
given two copies of their clinical clinical screening
results, one for their primary care visits.
provider and one for their own
records, and were
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
debriefed about their clinical values. Most partners were
During the group educational female and had an
session, the pharmacist led a closing average age of 48
discussion that focused on (20–77) years.
misconceptions brought up by
participants and their partners
during the earlier focused discussion
group that was moderated by a
project coordinator (Master in
Public Health level). Family was
involved in the study because the
patient’s family was viewed as one of
three major social and
environmental factors affecting a
patient’s DSM and should thus be a
target for DSM interventions to
encourage appropriate nutrition,
exercise, self-management, medical
treatment, involvement, and
support.
Gilliland In the family and Gilliland (1998) and Carter (1997) Not reported None reported 19
(2002)114 friend (FF) arm, report on preliminary research that
Gilliland patients with led to the inclusion of family and
(1998)117 diabetes received addressing family support in the
Carter (1997)118 the intervention in intervention. The FF arm included
family and friend activities to encourage social
groups interaction and discussion about
diabetes among members of the
group. The mentor encouraged them
to discuss and share their stories
about living with diabetes. The FF
arm joined in physical activities as a
group and shared a healthy meal.
Corkery (1997)94 Family member Family members could attend Patients were defined None reported 18.5
education sessions. In the CHW as having family
arm, the CHW acted as a liaison participation if a
between the patients, their families, family member
and health care providers. attended most of the
For the non-CHW intervention group, education sessions.
encounters took place only between The family
the nurse and the patient and family participation rate
member. was 31%.
Hu (2014)21 Adult family member There were two family sessions, for 37 family members Significant changes in 17.5
who resides in the which the family unit, including enrolled in the family member BMI
diabetes patient’s multiple members, was invited. The study. (–0.25 kg/m2 ) and
household, is ࣙ18 first family session explained the At baseline, family diabetes knowledge
years of age, and is purpose of the study, the format of members were from baseline to
willing to the intervention, and requirements primarily female postintervention.
participate of participants. Informed consent (70%) with an No significant
was obtained from the participant average age of 40.6 changes in waist
and participating adult family years and an average circumference, BP,
member, and baseline data were BMI of 32.7 kg/m2 ; PA, and fruit and
collected. The last family session 51% had vegetable
included postintervention data hypertension, 87% consumption, but
collection and discussions with had a high school trend noted in SBP,
family members about DSM. Each education or less, PA, and fruit and
participant was also asked to bring at 89% had a vegetable
least one family member to the 8 household income consumption (0.05
weekly group intervention meetings <$10,000, and 78% < P < 0.09).
that took place between the two were from Mexico.
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
family sessions. A group discussion
with open-ended questions on
family support was facilitated at the
end of the first and last group
meetings. The last group session also
included a celebration of completion
of the program for both participants
and family members with a
certificate and food. Focusing on
family involvement and family
centeredness was viewed as an
important aspect of the intervention
due to the Hispanic cultural value of
familismo. Support from family
members was viewed as an
important social factor affecting
behavior change; thus, the
intervention focused on fostering
behavioral changes through building
family support.
Williams Supportive family One intervention strategy was Not reported None reported 16
(2014)113 member or friend involving a key family/friend as a
to serve as a supporter for achieving patient DSM
support person goals. Some of the group DSME
sessions also involved the
participation of a supportive family
member or friend to encourage
shared learning and to enhance the
ability of the support person to
know how to be helpful.
Anderson-Loftin Family members Families were encouraged to The article reports None reported 15.5
(2002)102 participate in the dietary education many family
group sessions and discussion members actively
groups to capitalize on the value of participated in the
family and to provide cooking class.
transportation. Healthy meals were
served to participants and family
members at the end of the first class.
The second class was a cooking class,
and after the meal preparation,
participants and family dined and
were encouraged to share their own
healthy recipes. The home visit by
the nurse case manager (NCM) was
also meant to solicit family support.
Kluding Family members or Family members or other supportive Not reported None reported 15
(2010)105 other supportive people were invited for all
people educational sessions and were
specifically included for two sessions:
“family support day” in week 5 and
“graduation ceremony” in week 10.
Trief (2011)68 Couples were In the couples’ intervention arm, Not reported None reported 14.5
enrolled; patients patients and partners participated in
with diabetes and exercises to promote collaborative
their partners both problem solving as they worked on
had to be >21 their goals. The intervention
years of age and included two phone calls on
been married or speakerphone that focused on
partnered >1 year couples’ communication,
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
particularly around emotions and
situations that might be
problematic for the patient, so that
the partner could share his/her
feelings and they could discuss ways
to problem solve together.
Homework and discussion tasks
involved both partners in goal
setting, contracting, and skills to
improve communication.
Islam (2013)111 Family members Islam (2012) reports on focus group Not reported CHWs qualitatively 14.5
Islam (2012)121 findings that led to the inclusion of reported having an
family and addressing family impact on family
support in the intervention. Based members and on
on the findings from the facilitating family
preliminary focus group study, it support between
was determined that strategies to participants and
overcome family conflict and their family
promote positive family members.
communication and family
activities to promote social support
would be incorporated into the
intervention. Thus, “Effects of
family support on managing stress”
was one of the session topics. CHWs
also encouraged family support
during the one-on-one visits.
Brown (1995)50 A family member, Each participant was required to On average, family Family members 14
preferably a spouse identify a support person who members/support indicated in
or first-degree would participate in the educational persons attended 6 postsession
relative who would and support sessions. The bilingual of the 9 meetings. interviews that the
participate as a Mexican-American lay community The size of the group, sessions helped
support person. If worker conducted follow-up 6 patients and 6 them to improve
a family member support sessions with family members, their health
was not available, patients/families after the education was deemed practices,
a close friend sessions were done. One of the appropriate by particularly with
participated. emphases during sessions was participants. regard to
support from family, friends, and nutrition.
other subjects. Family/friends were Patients reported in
invited to the support session to talk postsession
about DSM problems and the interviews that
impact of diabetes on the family. having family
Encouraging support from family members/support
members and motivating them to persons at the
improve their health habits was also sessions was very
emphasized. helpful.
Mendenhall Family members, Family members attended all meetings Not reported, except None reported 13.5
(2010)106 including patients’ of the Family Education Diabetes in saying that
Mendenhall spouses, parents, Series program. They were involved generally 35–40
(2012)107 and/or children in data collection by checking and community
recording each other’s blood sugar, members,
weight, and BMI and by conducting including patients
foot checks. Family members were and family
viewed as program participants but members,
not enrolled as study participants attended meetings
for the purposes of the research
study. The program also had a
session topic specifically focusing
on family relationships and social
support.
Continued
Table 1. Continued
Quality
Definition Description of family Level of family Family score
Reference of family involvement participation outcomes (out of 27)
Roblin (2011)108 A supporter, defined A family member, relative, or close Patient and Qualitative findings 12
as a family friend was asked by the patient to supporter indicated that
member, relative, serve in the support role. During the attended both the support persons
or close friend enrollment session, supporters were enrollment and reported an
whose support instructed in motivational coaching disenrollment improved ability
and opinion were so they could provide effective sessions and confidence to
valued by the feedback to the diabetes patient and provide emotional
diabetes patient, help assess barriers to effective and instrumental
who did not live in self-monitoring of blood glucose support to their
the patient’s same (SMBG). During the intervention, a paired diabetes
household, and summary of SMBG adherence and patient in their
who agreed to results were sent to the patient or SMBG and an
enroll in the study support person to prompt improved social
as a support conversations and facilitate proximity to their
person supportive relationships in order to paired diabetes
reinforce the importance of SMBG patient.
and achieving good glucose control.
Both the patient and supporter were
asked for input about the
intervention at the disenrollment
session.
Archuleta Family members Family members were invited to attend Class participants None reported 12
(2012)112 four 3-h cooking/nutrition classes included family
with their family member with members without
diabetes. Conducting the education diabetes, but only
together with caregivers or spouses data from diabetes
and in a community setting with patients was
food that is socially acceptable was reported.
intentionally incorporated into the
intervention as a strategy to build
social support.
Glueck (2014)115 Loved ones; a spouse The goal of the diabetes management In 2007, 6 of 24 None reported 10
or family member and treatment support groups was to (25%) patients
provide education and support to enrolled brought a
individuals diagnosed with diabetes spouse. In 2008, 3
and their loved ones and to promote of 19 (16%)
DSM. Another critical goal for these enrolled brought a
groups was that individuals spouse. In 2009,
diagnosed with diabetes and their attendance data
family members be active was not available
participants rather than simply for the 14 patients
attend the program passively and to who registered for
make the group about the process the series.
and an experience for enhanced
learning for families. Incorporation
of family members active in the
caregiving process in the groups was
viewed as important because
diabetes affects the family, and
treatments and recommendations
must be changed within the context
of the patient’s social, cultural, and
ecological environment. As such,
when patients registered, they were
encouraged to bring a spouse or
family member to weekly meetings
to also share and receive support
from the group.
that reported A1c, 11 found significant improve- that improvements in physical activity were not sus-
ments50,80,83,85,91,94,96,99,102,103,106,114 . Seven studies tained at 12-month follow-up113 . Six out of eight
noted improvement in A1c from baseline to post- studies measuring patients’ blood glucose monitor-
intervention50,91,94,96,99,103,106 , while others reported ing noted improvements21,80,97,108–110,115 , and two
improvements from baseline to 5 months post- out of six measuring medication adherence noted
intervention102 , 30 weeks postbaseline99 , 7.7 months improvements109,115 . Some studies found improve-
postbaseline94 , and 12 months postbaseline91 . Four ments in some self-care behaviors but not in
studies demonstrated short-term improvements in others21,97,98,103,111,113 .
A1c that were not maintained at 6 months106 , 12
months80,96 , or 24 months85 . Healthcare utilization
Of the 11 studies that reported blood pressure One study found a significant decrease in emer-
outcomes, three demonstrated short-term improve- gency room visits by intervention participants but
ments in blood pressure21,96,106 , two reported not in the number of hospitalizations79 . Another
improvements at 12 months113,114 , and one reported study found improvements in the number of acute
improvements in diastolic blood pressure at care visits but no change in length of hospital stay102 .
24 months77 . Among the nine studies tracking
weight, four noted significant weight loss over Cost
time93,98,101,106 . Of nine studies reporting body-mass Only two studies reported the cost of the inter-
index (BMI), three found improvements in BMI vention91–93 .
in the short-term83,85,101,113 ; however, for one study
these results were not sustained at 12 months113 . Patient outcomes by family involvement
Three of 11 studies assessing cholesterol showed Of the 26 studies, 17 studies did not report
improvements in lipid profiles77,87,99 . patient outcomes by family involvement77,79,80,
88,89,93,96–103,105–107,111–113,115
. Four studies required
Patient psychosocial outcomes
patients in all arms to enroll with a family member/
Several studies assessed psychosocial outcomes for
support person, thus precluding them from assess-
patients. All three studies measuring depression
ing outcomes by family involvement21,50,90,91,108 .
found improvements in patients’ reported depres-
Three studies reported positive effects of fam-
sive symptoms99,109–111 . One study measured dia-
ily involvement. Barrera reported that family sup-
betes distress and found improvements109,110 . Of
port had an effect on increases in physical activity
the four studies that assessed quality of life, three
after accounting for the effects of group support86 .
demonstrated improvements21,96,99 . Of 10 studies
Gilliland demonstrated a decrease in diastolic blood
measuring self-efficacy, seven found improve-
pressure in the family arm114 . Aikens conducted
ments21,80,83,85,99,105,108,111 . The ¡Viva Bien! program
subgroup analyses comparing patients with fam-
also noted improvements in patients’ perceived
ily involvement to those without and found that
supportive resources83,85 . One study reported that
patients enrolling with an informal caregiver had
patients felt increased emotional and instrumental
higher rates of engagement, were less likely to
support in blood glucose self-monitoring108 .
report frequent high glucose levels (P = 0.021), and
Patient diabetes self-management behaviors more likely to regularly check their blood pressure
Of the 13 studies measuring diabetes knowl- (P = 0.017)110 .
edge, 12 noted improvements in patients’ dia- However, two studies found no impact of
betes knowledge21,50,80,91,94,96,99,103,107,111,113,115 . Of family involvement. One reported results from
15 studies assessing diet, 11 demonstrated improve- subgroup analyses comparing patients with family
ments in dietary habits21,80,83,85,93,94,102,103,107,111, involvement to those without and found that
112,115
. A study utilizing cooking classes showed sig- family participation in education sessions was not a
nificant improvements in dietary behaviors, includ- significant factor in program completion94 . In their
ing caloric intake, saturated fat, cholesterol, and telephone-based intervention, Trief et al. compared
fat consumed112 . Out of 12 studies assessing exer- outcomes of patients with family involvement to
cise, five found improvements in patient physical those without and, contrary to their hypothesis,
activity83,85,107,111,113,115 . However, one study found found that results in the individual intervention
group appeared to be better overall than those in summary of SMBG adherence and results were sent
the couples intervention group87 . to the patient and his/her support person to prompt
conversations and facilitate supportive relationships
Family participation and outcomes in order to reinforce the importance of SMBG and
Table 1 describes family participation in the inter- achieving good glucose control. Both the patient
ventions and family outcomes. Of 26 studies, and supporter were asked for feedback about the
most defined family members as spouses, par- intervention at the final session.
ents, children, or relatives50,80,82,90–92,106,108,115 . One In Trief’s study, patients and partners partici-
study involved couples87 . Two studies required pated in exercises to promote collaborative problem
that the family member reside in the patient’s solving87 . Two phone calls on speakerphone were
household21,80,82 . Many studies stated that family conducted with each couple, focused specifically
members were included in the intervention with- on the couples’ communication. Homework and
out explaining who they defined as a family discussion tasks involved both partners in goal
member. Some studies included other support- setting and improving communication skills87 .
ive people105 or friends in lieu of a family While most studies focused on encouraging fam-
member for index participants who chose this ily members’ supportive behaviors, five studies
option50,88–91,101,103,104,113,114 . One further specified reported addressing emotions and situations that
that the friend had to be living in the partici- might be problematic for the patient50,87,91,101,109 .
pant’s household80–82 , while another stated the fam- Few studies reported on actual outcomes for par-
ily member or close friend must be someone living ticipating family members. Some studies reported
outside the patient’s home109,110 . qualitative findings that the intervention improved
Family involvement varied across studies. family members’ ability to support to their loved
Most studies noted that families were invited to one with diabetes regarding SMBG and also helped
attend the intervention classes or meetings21,50,80, family members to improve their own diets50,98,108 .
82,83,85,89,91,93–95,97,98,100–102,106,107,112,113 One study noted significant improvements in BMI
. In some
studies, authors stated that family members were and diabetes knowledge among family members
enrolled in the study21,87,95,108 . Some interventions but no changes in waist circumference, blood
included family-themed topics in the education ses- pressure, physical activity, or fruit and vegetable
sions, such as support of family in managing stress consumption21 .
and traditional cultural values regarding familial
and social relationships21,80,82,88,89,93,97,98,100,103,104, Quality scoring
111,119,121
. In other studies, family participated The quality scores for the studies ranged from 10
in physical activities or shared a healthy meal83, to 24.5, with a mean score of 18. Of the 27 cri-
85,88,89,93,114,120
. Family support was encouraged by teria composing the quality score, the studies we
CHWs77–79,100,111,121 . Excluding the interventions reviewed scored the lowest in the following cate-
that specifically enrolled dyads21,50,87,90,91,108 , only gories: attempt to blind the study subjects, attempt
some studies noted actual rates of family to blind those measuring the main outcomes,
participation50,89,94,101,109,110,115 , which ranged reporting of adverse events, using a representative
from 16% to 79%. sample, and reporting of sample-size calculation.
In Aikens et al., patients received weekly IVR calls Appendix S3 describes the quality scores in further
to assess health status and self-care and to receive tai- detail for each study.
lored, prerecorded support messages. Family care- Fifteen studies had above average quality scores
givers were notified of the results of each call (ࣙ18). Of these 15 studies, seven had sub-
and were given suggestions for self-management stantial family involvement88–92,97,98,101,103,104,109,110,
support109,110 . 114,117–119
. Of these seven studies, only two stud-
In Roblin’s study108 , family supporters were ies found improvements in A1c90–92,103,104,119 . Four
instructed in motivational coaching so they could of the seven studies showed no improvement
88,89,97,98,101,114
provide effective feedback to the patient and , and one study did not measure
help assess barriers to effective self-monitoring of A1c109,110 . There were two more studies that
blood glucose (SMBG). During the intervention, a reported substantial family involvement in the study
intervention; however, they both had lower quality sion of family and described family-based activities
scores and either did not measure108 or did not find and involvement in great detail21,87,101,108–110,115 .
a significant improvement in A1c87 . Many included family-themed topics in the educa-
tion sessions, such as teaching ways to manage stress
Discussion and having family members engage in physical
Since the majority of disease-management activ- activities and healthy meals together with patients.
ities for many adults occurs within the family Other studies encouraged family support through
environment, involving families in diabetes self- home visits and interactions with CHWs. However,
care interventions may be a key mechanism to many studies did not describe a theoretical basis
improving diabetes outcomes for patients. We for the involvement of family or report on the
systematically reviewed the literature from 1994 to extent of family involvement. Several studies in
2014 and identified 26 studies that reported find- our review mentioned that families were invited
ings from family-based diabetes self-management to intervention meetings, classes, and home visits
interventions for adults with diabetes. Studies but lacked detail on the content that was designed
were conducted in a range of patient populations for family members, how family members inter-
and settings but reported varying levels of family acted in the class, and what family outcomes the
involvement and impact on patient outcomes. interventions were targeting. Few studies reported
Many studies used scientifically rigorous study on family attendance or participation rates in the
designs, such as randomized controlled trials; how- intervention. Also, many studies did not define
ever, the quality of the studies varied significantly76 . who qualified as a “family member,” a detail which
Some reports included an in-depth description of should be specified since the definition can be very
methods or referred to previously published study broad and may include friends and other support
protocols; however, many other studies did not persons67 , and the level of support these contacts
report details on their methods, including power provide may differ123 . Who is considered a “family
calculations. Quality scores were also lower for stud- member” may also vary with cultural context in
ies that did not report attendance or follow-up rates different populations. Without a clear understand-
or assess fidelity to the intervention. Furthermore, ing of the theoretical basis of involving family, who
we had to exclude several studies from our review could serve as a “family member,” and how family
because they did not describe in detail the involve- is involved in the intervention and to what extent, it
ment of family in the background or methods sec- is challenging to draw conclusions about the impact
tion. Previous systematic reviews of family-based of including family in self-care interventions.
interventions have found a similar lack of detailed Many interventions in our review measured
descriptions in the methods used73 . The family- patients’ clinical outcomes, but their impact varied.
based intervention was often offered as a group Several studies found improvements in A1c in the
program that was compared to either usual care or short term; however, studies with follow-up beyond
individual educational sessions. Studies may need 1 year found that these improvements were not
to compare similar interventions both with and maintained. Some studies demonstrated improve-
without a family component to truly assess the ments in other clinical patient outcomes important
impact of including family on patient outcomes. to patients with diabetes, such as blood pressure,
More studies are needed that utilize rigorous study weight loss, and cholesterol; however, many stud-
designs, adhere to reporting guidelines122 , assess ies found no significant changes. The impact of
outcomes specific to diabetes patients, and include self-care interventions on long-term patient out-
relevant comparison groups to fully understand the comes can be challenging after the intensive inter-
impact of family-based interventions on patient vention period ends124 , but involving family in these
outcomes. interventions should help support patients in sus-
We found that the involvement of the family taining changes in self-care and in maintaining
members and integration of families into the inter- improvements12 . In addition to strengthening the
ventions varied widely across studies. Some studies family-based components of self-care interventions,
used a strong theoretical framework for the inclu- having more intensive or longer interventions and
providing linkages with the healthcare system and evaluate the benefits of diabetes self-management
the community may be needed to affect patient clin- interventions for both the patient and the family
ical outcomes124,125 . member40 .
Studies that assessed psychosocial outcomes We found several studies conducted with diverse
found improvements in patients’ depressive symp- patient populations that were culturally tailored to
toms, diabetes distress, quality of life, self-efficacy, the target audience. The inclusion of family in dia-
and perceived social support. Many studies also betes self-care interventions is important for many
found improvements in patients’ diabetes knowl- patients from racial/ethnic minority populations
edge, self-care behaviors, and dietary habits, but and is an important aspect of culturally tailoring
several studies found no change in these outcomes educational programs46–48,67,124,127–130 . The litera-
or improvements in only some self-care behaviors. ture notes many benefits of involving families of
This finding is not surprising, since social support patients from racial/ethnic minority groups in dia-
may be associated with some self-care behaviors betes interventions, including the chance to provide
more than others33,66 . Based on our review, it family members with knowledge about the disease,
seems that family-based interventions may affect dispelling myths and misconceptions about the dis-
psychosocial outcomes, diabetes knowledge, and ease, and teaching them ways to support patients
some self-care behaviors in the short-term. Further in self-care8,33,37,46–48,131 . Families are also eager to
research is needed to assess the maintenance over learn strategies for being supportive of their family
time of improvements in patients’ psychosocial and members with diabetes33,127 . While the studies
behavioral outcomes and how these changes can we reviewed included diverse patient populations
be utilized to improve physical health. Involving and settings, only two studies targeted Asian
families in diabetes education interventions may Americans99,100,111 . Further studies using family-
enable them to be more supportive of the patient based diabetes interventions need to target Asian
and improve the patient’s feeling of being supported subpopulations, many of which have high rates of
in their diabetes self-care126 . diabetes1 .
Through their participation in health inter- Considering more than a quarter of adults aged
ventions, family members may also experience 65 and older have diabetes1,132 , there is a pressing
improvements in their own knowledge about need for family members to support older patients
diabetes, skills in supporting loved ones with with diabetes. In our review, only a few studies tar-
diabetes, and changes in their own health behav- geted older adults105,109,110,113,114 . Only one study
iors and health outcomes. While the studies in was conducted in the VA, a setting that provides
our review measured a large range of patient out- healthcare for many older patients with chronic
comes, few reported on family member outcomes. diseases109,110,133 . Considering many older patients
Some studies found that family members were have greater needs for social support and may
highly satisfied with the interventions and that need assistance in diabetes self-care, future studies
their involvement improved their ability and confi- should be conducted among older adult and veteran
dence to provide emotional and instrumental sup- populations132–134 . One study found that elderly dia-
port to their loved ones with diabetes50,108 . A few betic patients whose spouses participated with them
studies noted improvements in family members’ in a diabetes education program showed greater
BMI, diabetes knowledge, and diet and exercise improvements in knowledge, metabolic control, and
behaviors21,50,97,98,103,104 . However, we found many stress level than those who participated alone135 .
studies that we excluded from our review because Considering the burden of diabetes among older
family members’ results were aggregated with the adult populations, involving family members and
patients’ outcomes. Ultimately, failure to separately caregivers in interventions for older patient popu-
assess effects on both the patient and family member lations may be crucial for providing older patients
provides an incomplete picture regarding the effec- with instrumental and social support related to their
tiveness of these health education interventions40 . diabetes management.
Lack of improvement for the patient might be Future family-based interventions may also need
explained by negative effects of the intervention to consider the role of gender in family-based
on the family member31 . Future studies need to interventions and include an assessment of cost
and healthcare utilization. Previous studies have ment that reported improvement in A1c91,103,104,119 .
noted differences in support received by female Owing to the heterogeneity of the study designs,
patients with diabetes65,126,136 . We found some interventions, extent of family involvement, and
studies that assessed the impact of the intervention reporting of results, it is difficult to determine
by gender90,93 . Future studies should explore how whether and how family involvement in diabetes
family support may differ by gender of the patient interventions can affect patient and family mem-
and of the support person, and how this may affect bers’ health outcomes. Future studies should clearly
clinical outcomes. Family-based studies should describe the role of family in the intervention,
also include measures beyond clinical, behavioral, provide details on family-based topics in the inter-
and psychosocial outcomes, such as cost and vention, assess the quality and extent of family par-
healthcare utilization. We found few studies which ticipation, and compare patient outcomes with and
measured cost of the intervention or patients’ without family involvement. While including fam-
healthcare utilization79,91–93,102 . Assessing the cost- ilies in diabetes self-management interventions for
effectiveness of family-based interventions will help adults has a strong theoretical and cultural basis for
to further quantify the benefit of including family in many patient populations6,12,124 , there is much work
interventions for diabetes. Furthermore, assessing to be done to fully understand what roles family
healthcare utilization, such as hospitalizations and members should play in family-based diabetes self-
emergency room visits, is also important because it management interventions and how their involve-
bears a heavy expense on patients and may indicate ment can affect patients’ diabetes outcomes.
worsening of disease or lack of instrumental or
social support. Acknowledgments
Appendix S3: Quality scores for family-based inter- control of insulin-dependent diabetes. Int. J. Psychiatry
ventions for adults with type 1 and type 2 diabetes, Med. 22: 105–117.
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