[acb-hsp] Predictors of Support Groups ...Families with Mental Illness

[J.Rayl]

Would be interesting to determine whether the same is true of families of blind people, and I'd venture to say it is.


Predictors of Support
 Group Participation among Families of Persons with Mental Illness
by Tamar Heller , Jennifer A. Roccoforte , Judith A. Cook
Since deinstitutionalization, the responsibility of long-term care for persons with
mental illness has been increasingly assumed by families and communities. While an
estimated 40% of individuals with mental illness live with their families (Hatfield
& Lefley, 1987), those who live outside the family home often depend on the assistance
and continued involvement of their families. Family caregivers are willing, but ill-prepared,
for the physical, emotional, and financial burden that the mental illness of a relative
places on family resources (see Cook & Pickett, 1988, for a review). Too often, families
of persons with mental illness find themselves socially isolated, with little knowledge
about the illness and limited coping strategies (Battaglino, 1987). Many believe
themselves to be at fault for the relative's condition and feel a sense of guilt
and shame. In the past few years, mental health professionals have shifted their
view of families from an etiological factor in mental illness to recognizing families
as an important resource and advocate for persons with mental illness in our society
(Spaniol, Jung, Zipple, & Fitzgerald, 1987). Grella and Grusky (1989), nevertheless,
found that family caregivers expressed dissatisfaction with professional service
providers both in terms of feeling excluded from treatment planning for the relative
and obtaining assistance in coping with their own problems and concerns.
One promising intervention which is specifically designed to address the unmet needs
of these families are support groups
. The recent proliferation of family
support groups
 is part of the larger social movement of self-help and mutual assistance organizations
for people affected by a variety of chronic and stressful life circumstances, whose
needs have been inadequately addressed by the "ordinary" agencies of assistance (Levine,
1988). Despite the phenomenal growth of family
support groups
, little is known about who typically joins, the motivational factors for voluntary
participation, and what leads some families to discontinue their involvement. This
study addresses the differences between participants of
support groups
 for persons with mental illness and non-participants in terms of demographic characteristics,
level of disability of the relative with mental illness, and family
support
 resources. The study also provides a qualitative analysis of the reasons family
members cite for the decision to affiliate themselves with a
support group and why some members drop out.
The few studies which have examined differences between family members who join support
groups
 and members who do not, have found significant differences in socio-demographic
characteristics and level of functioning of the relative with mental illness. The
support
 group participants are more likely to be White, educated, middle-aged, and middle
income. Their relative with mental illness is more likely to be living at home, have
a diagnosis of schizophrenia, and have experienced multiple hospitalizations (Battaglino,
1987; Gidron, Guterman, & Hartman, 1990; Norton, Wandersman, Goldman, 1993; Sommer,
Williams, & Williams, 1984).
Few studies have addressed support group membership according to the availability
of support resources. The support
 group participants in a study by Karloff and Friesen (1991) reported using more
services than non-participants, but they also reported a greater need for information
and services and more difficulty obtaining services. It may be that families who
receive less
support from their natural support
 networks and from formal services are more likely to turn to support groups as a
resource. Hence, in addition to comparing the two groups
 of families on socio-demographic variables and on the level of disability of the
relative with mental illness, this study examines the role of natural
support and formal service support in fostering support group membership. It is hypothesized
that support
 group participants in comparison with non-participants will have a higher socioeconomic
level, will be more likely to co-reside with their relative and their relative will
have a lower level of functioning. Additionally we hypothesize that the
support group members will have less support
 resources than family caregivers who are not participating in
support groups.
The present study was part of a longitudinal investigation of family support groups
 in the Chicago metropolitan and southern Illinois regions. The 14 local
groups
 surveyed in the present study were local affiliates of two larger organizations
for persons with mental illness and their families: The Alliance for the Mentally
Ill (AMI) and a large service agency. While each local group differed in terms of
frequency of meetings, level of professional involvement, and meeting content, the
groups were typical of family support groups
 nationwide in that they addressed three primary functions: emotional
support
, information on mental illness, and political advocacy (Battaglino, 1987; Shapiro,
Possidente, Plum, & Lehman, 1983; Sommer et al., 1984).
The first function of family support groups is the provision of emotional support
 among members both through reciprocal, supportive verbal exchanges during group
meetings and through the encouragement of extra-meeting contact between members.
According to Levine and Perkins (1987),
support groups
 promote a psychological sense of community in which members provide acceptance,
understanding, practical advice, and guidance. The opportunity to identify with others
who share a similar life experience may help to reduce feelings of isolation and
shame. As members develop the capacity to cope more effectively with their own problems,
groups
 commonly encourage the more advanced members to take on leadership roles within
the group and to provide
support
 to new members. Reissman's (1965) "helpertherapy principle" posits that by helping
others, the helper acquires and rehearses adaptive coping strategies which in turn
lead to greater feelings of personal effectiveness. Helping others may also engender
a sense of purpose and meaning in an otherwise devastating life circumstance (Klass,
1984/85). Biegel and Yamatani (1986) and Shapiro et al. (1983) noted an increase
in perceived social
support
 as a result of participation in family
support groups.
The second function of family support groups
 is the education of family members about the causes, symptoms, and most recent advances
in the treatment of mental illness. Information is typically disseminated to group
members through guest speakers, monthly newsletters, lists of suggested readings,
and books that can be loaned to individual members. Of course, much is learned through
informal discussion in which members share behavior management strategies, learn
about available family
support
 services, and provide insights on how to negotiate more effectively with the professional
mental health system. The existing family research literature has documented improvements
in group members' general fund of knowledge regarding mental illness, a more realistic,
empowered, and less self-blaming view of their own role, and better relationships
with the relative with mental illness (Heller, Roccoforte, Hsieh, Cook, & Pickett,
1997; Medvene & Krauss, 1989; Norton et al., 1993; Shapiro et al., 1983).
Beyond the support and education of its own members, family support groups
 also serve a third important function of raising public awareness about the rights
of persons with mental illness through political advocacy on their behalf (Hatfield
& Lefley, 1987). Many groups
 conduct letter-writing campaigns to legislators, circulate petitions, and meet regularly
with local politicians to discuss critical issues concerning mental illness.
Groups
 also sponsor fund-raising activities to send group representatives or professional
lobbyists to state capitols for the purpose of rallying
support for legislative changes and public funding for mental illness.
Given the growing popularity of support groups for families of persons with mental
illness, service providers, support
 group leaders, and families are in need of published studies which address the question
of who is likely to join a
support
 group and provide insights into what leads families to seek the assistance of a
support group. The present study is one of only a few studies which has investigated
support
 group participation using a comparison group of families who are not affiliated
with a support
 group. This study, moreover, goes beyond examining differences between participants
and non-participants according to family demographics and the level of disability
of the relative with mental illness by comparing the two
groups also on support
 resources. The present study is also unique in its exploration of the reasons why
some
support group members decide to discontinue their involvement with the group.
Method
Procedure and Sample
This study represents a collaboration between researchers and the members and leaders
of support groups
 for families of persons with mental illness. Our research team members attended
individual
groups
 on a regular basis (a minimum of 3 times) as participant-observers in order to establish
rapport and gain acceptance among group members. The study recruited 12 family
support groups
 from the Chicago metropolitan area and 2 from southern Illinois to participate in
the study. The Chicago area
groups included all the family support groups
 that were in the city and the surrounding north and west suburbs. We excluded
groups that were primarily consumer support groups. None of the
groups we approached refused us. Two of the groups
 were excluded because they stopped meeting before we started collecting data. Four
of the 14
groups
 were led by professionals and the rest were led by family members of persons with
mental illness. The group size ranged from 4 to 26, with a mean of 13. Most of the
groups met monthly during the evening; two of the groups met weekly. The groups
 met in members' homes or at service agencies. During the meetings all the
groups
 included time for informal airing of information and feelings. Some of the
groups
 also had invited speakers for part of the meeting. Consent forms, questionnaires,
and paid return envelopes were distributed to group members at the end of group meetings.
Within a two-week period, follow-up phone calls were made to those members who had
not yet returned their questionnaires. Of the 164 questionnaires initially distributed,
131 were returned, resulting in an 80% response rate. Approximately one year later,
participants were surveyed by mail as to whether they were still participating in
the same
support
 group, and if they had dropped out, what were the reasons for dropping out. Of the
131 persons who were sent surveys, 96 returned them for a response rate of 73%. Of
the 96 who answered the surveys, 17 (17%) had dropped out. With the exception of
a question regarding reasons for dropping out of
support groups
, all the data reported in this study are from Time 1. To ascertain demographic differences
between families who returned the survey at Time 2 and families who did not, we compared
them on age, gender, level of education, race, income, and marital status. The nonrespondents
at Time 2 were less educated (t (127) = 2.81, p < .01), were more likely to be from
a minority group (xz (1) = 10.76, p < .01), were more likely to have an income below
$10,000 (x2 (1) = 4.87, p < .05), and were less likely to be married (x2 (1) = 4.97,
p < .05). They did not differ in age or gender. These differences are likely attributed
to the fact that none of the 6 support group members from a Hispanic group that disbanded
(the only group that disbanded) returned the survey the second time.
To construct a sample of non-participants of family support groups
, community agencies serving persons with mental illness and their families in the
Chicago area and southern Illinois called families to see if they were currently
involved in family
support groups
. If they said that they were not involved in
support groups
, they were mailed a consent form, questionnaire, and postage-paid return envelope.
Staff also made follow-up phone calls to families in the comparison group who had
not returned their questionnaires after two weeks. Of the 73 comparison group families
sent surveys, 59 returned the surveys (81%).
Table 1 and 2 present the characteristics of the respondents and their relative with
mental illness. About three-quarters of the total sample was female and White. About
60% of participants were married. The household annual income showed considerable
variability with one third of the families earning less than $20,000 and one third
earning over $40,000 annually. About half of the respondents were mothers. The average
number of years of education was 14 years. The average age was 57 years for the participants
and 53 years for the comparison group.
About two thirds of the relatives with mental illness were males and the primary
diagnosis was schizophrenia. Their average age was 36 years and average age of onset
was 20 ,years. Thirty-five percent of the participants' relatives lived with their
family, while only 12% of the non-participants' relatives lived with their family.
Measures
Characteristics of the family and relative with mental illness. Demographic data
concerning the family members included age, gender (female = 1, male = 2), income
(under $10,000 = 1 to over $40,000 = 5), education level (highest grade completed),
ethnicity (White = 2, minority = 1), marital status (married = 1, not married = 2),
and biological relationship to the relative with mental illness. The characteristics
of the relative with mental illness included age, gender (female = 1, male = 2),
diagnosis, level of assistance required (none = 1 to constant = 4 for 3 items, help
with medical needs, daily living activities, and money management), mental health
in the last six months (1 = improved, 2 = stayed the same, 3 = worsened), age of
onset of the mental illness, and living situation of the relative with mental illness
(outof-home = 1, in-home = 2).
Support resources. The Family Support Services Index (Heller & Factor, 1991) assessed
formal support
 services use. The scale describes 21 services for people with mental illness and
their families (e.g., counseling/psychotherapy for self, counseling psychotherapy
for relative). Respondents were asked whether or not they have used each service
in the past year (yes = and no = 0). Informal
support
 was measured by four of five subscales of the Social Provisions Scale (Russell,
Altmaier, & Van Velzen, 1984); Attachment, Social Integration, Reliable Alliance,
and Guidance. The total scale assessed how well respondents' current social relationships
supply them with the above four functional types of social
support (a = .92).
Support group participants: Referral sources, reasons for attending, and reasons
for leaving group. The support
 group participant subsample was asked to complete open-ended questions regarding
how they first heard about the
groups
 they were attending and their reasons for attending. These answers were then grouped
into categories by two researchers, who had 100% agreement on the categories. Group
members who were no longer attending the
groups
 at the one-year follow-up were asked to select from a list of possible reasons for
discontinuing participation in the group. An opportunity for an open-ended response
to this question was also provided.
Results
Comparison between Participants and Non-Participants
As shown in Tables 1 and 2, T tests and chi-square analyses were conducted to determine
differences between support
 group participants and non-participants in characteristics of the family and the
relative with mental illness and
support resources. The two groups
 differed significantly in respondent's age (t (176) = 2.17, p < .05), and in the
following characteristics of the relative with mental illness: residential status
(XI (1) = 9.85, p < .05), mental health status in the last six months (XI (2) = 10.86,
p < .01), and assistance required (t (187) = 2.72, p < .01). The participants and
nonparticipants also differed in services used (t (173) = -2.57, p < .05). The support
group members were older and were more likely to have relatives who lived at home,
who required more assistance, and whose mental health status worsened over the last
six months. They also were less likely to use formal services. The groups did not
differ significantly in gender, marital status, ethnicity, household annual income,
biological relationship to relative with mental illness, education level, and social
support.
As a means of identifying the variables that best distinguished the support
 group participants from the non-participants, logistic regression (using SPSSX)
of the variables, with
support
 group designation as the dependent variable were conducted. This model examined
the effects of variables (characteristics of the family and relative with mental
illness and
support resources) on support
 group designation as the dependent variable. To reduce the number of variables pertaining
to the demographic characteristics and level of functioning of the relative with
mental illness, only the variables that were significant in the univariate analyses
comparing the participants and nonparticipants were included (respondent's age, relative's
residential status, level of assistance required, and mental health status in last
six months). As seen in Table 3, the three variables that significantly identified
support
 group participants were (1) having the relative with mental illness living in the
family home, (2) a greater level of assistance required by the relative, and (3)
less services use.
Referral Sources
A qualitative analysis of participants' responses to how they first heard about the
group and reasons for attending are presented in Table 4. The most common source
was hearing about the group from a mental health professional or service agency.
Another key referral source was contact with
support groups. The less frequently cited referral sources included a personal friend
or a relative, and public media.
Reasons for Attending
When participants were asked to list their personal motivations for attending the
group, the most popular reason was to receive support
. One group member wrote, "They're part of my family. There's a closeness and warmth.
We call each other to check up on each other. We occasionally go out for fun," and
another participant said, "It's a wonderful group of human beings whose life experience
has been painful but produced growth." The second most common reason for attending
was to obtain information and education about mental illness. According to one parent,
"I have gained knowledge about mental health and through this have been able to cope
with my daughter's health problems." Other major reasons given were: to learn how
to help the relative, and to feel less alone by talking with others who share similar
problems. Less frequently cited reasons for attending included learning better coping
skills; sharing feelings and reducing negative emotions such as guilt, shame, and
stigma; helping others; to find out about formal
support
 services; political advocacy for persons with mental illness; and help for a specific
problem concerning the relative.
Reasons for Leaving
One year after the initial questionnaires were distributed, those participants who
were no longer attending group meetings were asked to identify their reasons for
leaving (see Table 4). Of the 17 former participants who responded, nearly half stated
that they did not have enough time to attend the meetings. Forty-one percent reported
that the group was no longer helpful to their situations. For example, one former
participant wrote, "We are fortunate our daughter's illness is under control after
hospitalization and her current medication. As a result, we don't feel the need to
attend group meetings any longer. We are very grateful for the help received when
we needed it and the least we can do now is to continue paying the yearly dues for
their financial
support
, and we continue receiving newsletters to keep abreast of mental health issues."
About one third of those dropping out reported problems with transportation and parking.
Eighteen percent cited inadequate leadership as the reason they had stopped attending.
As several former participants explained, "I would like the leader to give more guidance,
more suggestions to group members, and also limit time spent dealing with one person's
problems," and "I believe a strong leader/facilitator is needed to prevent a 'gripe'
session," and "Most of the time in meetings is spent listening to the same people
retell the same story over and over." Another 18% of former participants said they
did not feel comfortable with other group members.
Discussion
The results of the present study challenge the popular belief that support groups
 tend to attract only older, White, educated, middle-income females. No significant
differences between
support
 group participants and non-participants were noted on the demographic variables
of ethnicity, gender, income, education, and marital status. While age was found
to discriminate the two
groups
 in preliminary analyses, its effect was non-significant when entered in the logistic
regression analysis. Our results found that
support
 group participants were more likely to have a relative with mental illness who shared
a residence with them and who required more assistance than their non-
support
-group counterparts. Perhaps the severity of the problems facing the participants
is the most important factor in distinguishing people who join
support groups from those who do not. These families are the ones most likely to
need support
 and information in coping with their relative. This conclusion receives
support from previous research on support
 group participation in other focal problem areas (e.g., Hinrichsen, Revenson, &
Shinn, 1985; Lieberman & Videka-Sherman, 1986; Videka-Sherman, 1982).
In regard to the support variables, the two groups did not differ significantly in
terms of informal social support
 from family and friends. Nonetheless, the most popular reason participants reported
for attending a group was to receive emotional
support
. Unlike the results of previous research (e.g., Karloff & Friesen, 1991), participants
used fewer formal
support services than did the non-participant groups
 despite their need for greater assistance. The present findings suggest that the
combination of living with a relative who requires a great deal of assistance and
receiving inadequate
support from the formal service system is a primary factor distinguishing families
seeking support
 group assistance from those who do not. However, another explanation could be that
the sampling procedures of obtaining the comparison group from service agencies resulted
in a comparison sample who used more services. Future studies could examine this
issue further by including families unknown to the service system.
Practice Implications
This study has a number of potentially beneficial suggestions for family support
group organizations and for future research. Although our
support group sample was predominately composed of White, educated, married females,
our findings indicate a noteworthy level of support
 group participation by male, nonWhite, lower SES, and single individuals. Clearly,
family support groups
 appeal to a greater cross-section of people than the accepted standard. Future research
should explore the factors that prevent even greater participation by individuals
from a variety of backgrounds. A number of researchers have applied the concepts
of person-environment fit to explain
support
 group participation. According to this view, individuals will feel more comfortable
and become more involved in
groups
 in which there is a good fit between the personal characteristics of the individual
and those of the group members (Maton, 1993). Levine (1988) proposed that a process
of "homogenization" occurs in which new members whose characteristics match the group
are admitted and those with different characteristics are screened out. Preliminary
research appears to
support the importance of demographic fit in predicting support
 group participation. For example, Luke, Roberts, and Rappaport (1993) found that
individuals with personal characteristics similar to the
support
 group members were more likely to continue going to meetings.
The groups
 sampled in our study tended to have minimal within-group ethnic diversity. However,
the predominately African-American and Hispanic
groups
 addressed potential barriers and provided incentives for participation in effective
ways. Members of the African-American group, for example, regularly assisted one
another in transportation to and from meetings. In addition to conducting meetings
in Spanish, the Hispanic
groups provided meals to its members. Also, the Hispanic groups
 included a paid professional leader. When funding was withdrawn for one of the
groups
, the group disbanded. None of the persons who had been in that group returned the
survey at Time 2. Hence, another reason for no longer attending not shown in the
data is that the group was no longer meeting. It is likely that each target population
has different barriers and incentives to group participation. Group leaders, members,
and researchers would do well to focus on understanding the reasons people decide
whether or not to join a
support
 group. This can be accomplished by asking nonmembers about the costs and benefits
of group participation, as in a study by Norton et al. (1993), or through follow-up
surveys of group members who have discontinued their involvement in the group as
in the present study.
Our results suggest that family support groups
 should pay attention to the time constraints of group members. Perhaps an effort
to begin and end meetings on time would be useful in this respect.
Groups
 should also be more open and responsive to the changing needs of members as they
encounter new challenges and issues regarding the relative with mental illness. This
may ensure that group content does not become irrelevant or redundant and maintains
the long-term interest of members. As some
groups
 are held during the evening in high-crime neighborhoods,
groups
 must resolve safety and transportation obstacles by facilitating the formation of
car pools among members. Transportation problems must also be addressed for elderly
group members who no longer drive.
Another suggestion based on our research concerns group leadership. A number of respondents
expressed frustration with leaders for allowing a few members to dominate group discussions.
One group resolved this issue by determining a specific amount of time at the start
of the meeting for each group member to share his or her concerns, request help on
a specific problem, or just "check in" with the group. (The amount of time allotted
to individuals was based on the number of people present.) The final portion of the
meeting was designated as "cross-talk time," in which the group either informally
discussed themes raised during the individual sharing time or focused on the concerns
of those group members who required additional assistance.
A final consideration for support groups
 is increasing participation by targeting outreach efforts to known referral sources.
The most common referral source for the
support groups
 in this sample was through mental health professionals or agencies. Maintaining
a collaborative and mutually supportive alliance with the mental health system is
an important factor in the ability of
support groups
 to attract new members. At the same time,
groups
 need to target families who may not be connected to the mental health system through
media efforts that access the general population (e.g., television, radio, newspaper,
and posters). Greater communication and information-sharing among local
groups
, moreover, may lead to more successful recruitment efforts and stimulate new ideas
for addressing other issues facing support
groups.
-1-
Questia, a part of Gale, Cengage Learning. www.questia.com
Publication Information:
Article Title: Predictors of Support Group Participation among Families of Persons
with Mental Illness. Contributors: Tamar Heller - author, Jennifer A. Roccoforte
- author, Judith A. Cook - author. Journal Title: Family Relations. Volume: 46. Issue:
4. Publication Year: 1997. Page Number: 437+. © 1997 National Council on Family Relations.
Provided by ProQuest LLC. All Rights Reserved.
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Jessie Rayl
thedogmom63 at frontier.com
www.facebook.com/Eaglewings10
www.pathtogrowth.org
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