[acb-hsp] Support groups for Partners with Vision Loss

[J.Rayl]

Hi.  I found this article while doing research for an assignment.  Found it to be of interest, thought it may be a possibility for affiliates / chapters to consider.
Please don't reply to this because I have cross posted without paying careful attention to where your reply goes.  
Enjoy the article.

Support
 Group Programs for Partners of People with Vision Loss
by Carol J. Sussman-Skalka
When someone's partner experiences vision loss, there are many emotional and practical
issues that both people face. While people in intimate relationships usually are
the most important sources of social
support
 for one another, the onset of a disability can lead to changes in these relationships
(Cutrona, 1996). People who become visually impaired often feel overwhelmed by their
new situation and concerned about being a burden to others. Similarly, sighted partners
may find themselves feeling isolated, frustrated, and at a loss as to how to help
and what to do.
The specialized training and counseling services of vision rehabilitation can help
people with impaired vision develop the skills and strategies they need to restore
independence and improve the quality of their lives, even though many people are
unaware of these services. And, while vision rehabilitation usually focuses primarily
on the person who is visually impaired, the value of involving sighted partners and
other family members in the rehabilitation process is becoming increasingly clear
(Stuen et al., 1999). Research has shown that family involvement is linked to successful
adjustment to vision loss (Horowitz et al., 1994; Reinhardt, 2001) and that family
members can contribute to successful vision rehabilitation outcomes. For example,
Greig, West, and Overbury (1986) noted that successful use of low- vision devices
was related to high levels of family
support. And Moore (1984) found that individuals with vision loss who have family
members who support
 the rehabilitation process were more likely to have successful rehabilitation outcomes.
Family and friends also can gain a better understanding about what their relatives
are experiencing and can learn positive ways to help. Not surprisingly, the partners
of people who are visually impaired have more intense emotional and practical concerns
related to the person with vision loss than do other friends or family members (Horowitz
et al., 1998). This finding provided the impetus for the research institute of Lighthouse
International of New York to develop programs specifically to address the needs of
partners of people with vision impairment.
Programs for Partners is a project that was instigated with funds from the Grotta
Foundation for Senior Care and the Wallerstein Foundation for Geriatric Life Improvement.
The goal was to design a program that would maximize independence and quality of
life for older adults with vision impairment by providing
support and practical information to their partners.
SUPPORT GROUP MODELS
Project staff decided to test several models of support groups
 in their search for a means to successfully address the concerns of partners of
visually impaired people. In general,
support groups
 can offer the opportunity to meet others in similar situations, share concerns and
information, clarify feelings, receive help and comfort, compare solutions, and learn
about other resources. Findings from a Lighthouse national survey of
support groups for people with vision loss (Stuen, 1992) revealed that group members
credited their support
 group with enabling them to overcome depression and lead satisfying lives. What
is more, family members who attended these
groups
 also found them very helpful in dealing with their own feelings and learning how
to help.
The models pilot-tested by the Program for Partners initiative consisted of four
groups that each met for eight sessions. Three of the groups
 met in person, and one group met by telephone conference call. The project developed
a discussion guide that covered the following topics: Getting acquainted and sharing
concerns; understanding your partner's vision loss; exploring emotional issues; communication
between partners; organizing the home for accessibility, safety and comfort; getting
around safely; garnering
support
 from family and friends; and managing change and dealing with stress (Sussman-Skalka
and Cimarolli, 2002a). For each session, the guide provided goals, introductory statements,
conversation starters, leadership tips, and resources.
The three in-person group models included a group for sighted partners only; a group
that included the partners with vision loss in two sessions; and a group that was
self-directed, allowing members to select topics as they went along rather than follow
the sequence of the discussion guide. The telephone group was for sighted partners
only and followed the guide.
HIGHLIGHTS OF PATICIPANTS' RESPONSES
The following describes responses of the sighted partners to the various support
-group models in which they participated (Sussman-Skalka and Cimarolli, 2002b).
Most participants said that limiting the group to sighted partners provided an opportunity
to explore feelings and issues in ways that might not have been possible if their
partners with vision loss had been present. However, those who participated in the
model that included two meetings at which the partners with visual impairment joined
the group also found those meetings helpful. There was some indication that meetings
including both partners could be most successful if each partner was a member of
his or her own group, with both
groups
 meeting together from time to time to address common issues.
A model in which the group was self-directed was implemented in order to see if any
issues not in the discussion guide emerged. Although this was not the case, the format
allowed for flexibility in the sequence of topics addressed by the group and, based
on participants' requests, allowed time at the beginning of each session for members
to share and get help with immediate, pressing concerns. Most participants in the
groups
 that followed the discussion guide reported that a planned topic helped get a discussion
going and brought out issues that might not have emerged otherwise. As one participant
said, "The materials and topics made me pay attention to areas I haven't thought
of before." There also was some indication that a planned topic put less pressure
on group members to identify an issue for the session, gave them an opportunity to
think about the topic in advance, and legitimized the issue as a common concern.
It was apparent that even within the framework of the discussion guide, the group
leader needed to be flexible and allow group members to stray from a topic to address
more immediate issues.
Participants in the telephone conference-call group said they appreciated the opportunity
to benefit from a program that they could not have attended in person because of
chronic health conditions or geographic distance. The telephone group met for ninety
minutes (instead of two hours) because some people find it difficult to hold a telephone
for long periods of time and speakerphones do not always work effectively and are
not always available. The only adjustment made in the implementation of this model
(as compared to the in-person
groups
) was that materials were distributed in advance, which turned out to be an advantage.
Participants enjoyed reading the materials in advance and then discussing them with
each other during the meeting. In fact, feedback from the in-person group members
revealed that they, too, would have liked to receive the materials ahead of time.
HIGHLIGHTS OF ISSUES FACING SIGHTED PARTNERS
Sighted partners of people with impaired vision experience many emotions and adjustments
as they cope with the impact of vision loss on themselves (Sussman-Skalka, 2002).
While feelings of anger and guilt are common, they are often difficult to admit because
they are frequently viewed as negative. After sharing these feelings with others
in similar situations, some group participants found that talking with their partners
about these feelings improved understanding in both directions. Sighted partners
also experienced changes in the balance of giving and receiving in their relationships.
As Lustbader (1995) and others have observed, receiving can be much harder than giving.
Especially in situations where partners' responsibilities are shifting, it is important
for both partners to feel that they are contributing to daily activities and decisions
and to the relationship as a whole. Many sighted partners reported that they also
struggle with when to offer assistance and when to hold back. Providing unneeded
help can come at an enormous price-feelings of uselessness for the person with impaired
vision and unnecessary burdens for the sighted partner. As one group participant
said, "Dependency really robs people of self-esteem. The more they learn, the happier
they'll be and the happier we'll be."
Group members reported that communication between partners also can be affected by
additional sensitivities-not wanting to hurt the other person's feelings, discomfort
about putting one's own needs first, or reluctance to say anything that could be
taken as criticism. While some couples may find it easier to hold back feelings,
unexpressed emotions can build up over time and get in the way of the relationship.
Some group participants said that talking openly had brought them closer to their
partners. Group participants also said they benefited from learning about available
vision rehabilitation services and the positive impact they can have in many aspects
of life.
THE VALUE OF PROGRAM FOR PARTNERS
The project's evaluation showed the value of the Program for Partners support groups
 (Sussman-Skalka and Cimarolli, 2002). A majority of the participants reported that
the program had helped them function better in their everyday lives. The participants
learned from each other as well as from the content of the sessions. Based on pre-
and post-program interviews, the findings also showed that participants improved
significantly in their understanding of what their partners could see and do, their
confidence about when and how to help, and their ability to freely discuss stressful
situations. Overall, the vast majority of partners who participated in the
support groups
 reported that they were "very satisfied" with the program. One partner summed it
up this way: "Hearing the concerns of others, talking about the guilt-just knowing
that other people have the same concerns, the same anxieties-and knowing you are
not alone is helpful."
Two publications based on the program are available: "Programs for Partners of People
with Impaired Vision: A Discussion Guide for Support
 Group Leaders," and a companion booklet for partners, "When Your Partner Becomes
Visually Impaired: Helpful Insights and Tips for Coping." To order free of charge,
contact the Lighthouse Information and Resource Service at (800) 829-0500 or info at lighthouse.org.
-1-
Questia, a part of Gale, Cengage Learning. www.questia.com
Publication Information:
Article Title: Support Group Programs for Partners of People with Vision Loss. Contributors:
Carol J. Sussman-Skalka - author. Journal Title: Generations. Volume: 27. Issue:
1. Publication Year: 2003. Page Number: 98+. © 2003 American Society on Aging. Provided
by ProQuest LLC. All Rights Reserved.
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Jessie Rayl
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