British Journal

of Visual Impairment
http://jvi.sagepub.com/

Should family and friends be involved in group-based rehabilitation programs for

adults with low vision?
G. Rees, C. Saw, M. Larizza, E. Lamoureux and J. Keeffe
British Journal of Visual Impairment 2007 25: 155
DOI: 10.1177/0264619607076001
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Should family and friends be

involved in group-based
rehabilitation programs for
adults with low vision?

BJVI

THE BRITISH
JOURNAL OF
VISUAL
IMPAIRMENT

Copyright 2007 SAGE Publications

(Los Angeles, London, New Delhi
and Singapore)
Vol 25(2): 155168
DOI: 10. 1177/0264619607076001
ARTICLE

G . R E E S , C . S AW, M . L A R I Z Z A , E . L A M O U R E U X
A N D J . K E E F F E Centre for Eye Research Australia, University of
Melbourne, Department of Opthalmology

(J. KEEFFE

is also with Vision CRC, Australia)

A B S T R AC T This qualitative study investigates the views of

clients with low vision and vision rehabilitation professionals on
the involvement of family and friends in group-based rehabilitation programs. Both groups outlined advantages and disadvantages to involving significant others, and it is essential that clients
are given the choice. Future work is needed to examine the
uptake, process and outcomes of rehabilitation programs in
which clients are able to invite family and friends.
K E Y WO R D S

a d u l t s , l ow v i s i o n , r e h a b i l i t a t i o n

BACKGROUND
Social support has been shown to be an important factor for older individuals living with chronic health conditions (Cohen and Wills, 1985;
Sarason et al., 1997). For older adults with vision impairment, the availability of practical and emotional support from family and friends is
important for psychological adaptation (Reinhardt, 1996, 2001;
Reinhardt et al., 2006). Family support may encourage the uptake of
rehabilitation services and continued use of low vision devices (Moore,
1984; Watson, 2001). Whilst the benefits of social support are widely
accepted, negative consequences have also been acknowledged. For
example, receiving practical support from others may lead to feelings of
helplessness and dependence (Reinhardt, 2001; Reinhardt et al., 2006).
Overprotective or highly anxious family members may therefore
impede the rehabilitation process by reducing the clients confidence or
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T H E B R I T I S H J O U R NA L O F V I S U A L I M PA I R M E N T 2 5 ( 2 )

motivation for independence (Cimarolli et al., 2006; Moore, 1984).

Negative interactions with family members are often reported by
people with vision impairment and have been associated with depression (Cimarolli and Boerner, 2005; Reinhardt, 2001). In a recent qualitative study, Cimarolli and Boerner (2005) highlighted that the negative
family interactions commonly reported by middle-aged adults with
vision impairment most often reflected the family members lack of
understanding of the functional and psychological impact of vision
impairment.
It is clear that the understanding, attitudes and behaviours of family members and friends (hereafter significant others) influence the psychological well-being and adaptation of individuals with low vision. For this
reason, the involvement of significant others in vision rehabilitation has
been considered important (Moore, 1984; Travis et al., 2003). However,
little is known about the frequency or degree of involvement of others in
the rehabilitation process and the impact of this involvement on clients
and their significant others. One recent trial was originally designed to
examine the impact of involving a family member in a vision rehabilitation program on clients functioning (McCabe et al., 2000). Participants in
the study were randomly allocated to attend the rehabilitation program
on their own, or with a family member. However, this process produced
problems in recruitment and retention as some participants reported that
they did not want to involve family members in rehabilitation, and
because some family members declined to be involved. A reduced sample size meant that the study did not have sufficient power to detect a difference in rehabilitation outcome between the groups.
The value of peer support in adaptation to vision loss has recently led
to the development of group-based programs for individuals with vision
impairment (Birk et al., 2004; Brody et al., 2005; Brody et al., 1999;
Dahlin-Ivanoff et al., 1998; Eklund et al., 2004). Evaluations based on
randomized controlled trials suggest that group-based programs can be
effective in improving psychological well-being and functional outcomes for older adults with low vision (Brody et al., 2005; Brody et al.,
1999; Dahlin-Ivanoff et al., 1998; Eklund et al., 2004). These studies to
date have not included significant others in group-based programs for
vision impairment, although this is common in interventions for other
chronic health conditions such as arthritis, cancer and heart disease
(Martire et al., 2004). Research suggests that interventions involving
family members can reduce care-giving burden and in some cases
decrease depressive symptoms reported by both family members and
patients (Martire et al., 2004).
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REES ET AL.: GROUP-BASED REHABILITATION

It is possible that involving significant others in group-based vision

rehabilitation programs may improve their understanding of the impact
of low vision and the rehabilitation process, and in turn help promote
more successful adaptation to vision impairment. However, the degree
to which clients wish to involve others in rehabilitation services is
unclear. As part of the development of a new group-based rehabilitation
program for low vision, we wished to explore this issue from the perspective of clients with low vision and vision rehabilitation professionals. The aim of the study was to investigate clients views regarding the
involvement of significant others in a group-based rehabilitation program and the advantages and disadvantages perceived by vision rehabilitation professionals.

METHODS
Participants and procedures
Participants with low vision

Participants with low vision were recruited from public and private eye
clinics in Melbourne, Australia. Participants were required to be over
the age of 18 and have presenting visual acuity < 6/12 in the better eye.
This level was chosen as previous research has shown that quality of life
is affected with mild vision loss of < 6/12 (Hassell et al., 2006). Other
criteria for inclusion were fluency in English and the absence of cognitive or hearing deficits that would impact on the ability to participate in
the interview as judged by the interviewer. This study was part of a
wider qualitative interview study designed to explore the needs of people with low vision and to determine their interest in participating in a
group-based rehabilitation program. A full report regarding level of
interest in such a program, barriers to uptake and views on the content
of a group-based rehabilitation program will be reported elsewhere. We
report here on the 21 participants who stated that they were interested
in attending and their views specifically regarding the involvement of significant others in such a program. Demographics are outlined in Table 1.
The sample included participants with a range of ages, different eye
conditions, different levels of visual acuity, and those who had, and had
not, received vision rehabilitation services in the past.
Ethical approval for this project was received from the Human Research
and Ethics Committee of the Royal Victorian Eye and Ear Hospital.
Semi-structured face to face interviews were conducted. Participants
were asked if they would prefer to attend the program on their own, or
to have someone (for example, a close friend or relative) with them
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T H E B R I T I S H J O U R NA L O F V I S U A L I M PA I R M E N T 2 5 ( 2 )

Table 1. The demographic and vision characteristics of 21 interview

participants with low vision
Age (years)
Sex, n(%)
Location of birth, n(%)
Current address, n(%)
Eye condition, n(%)

Presenting distance
visual acuity, n(%)
Previously received
vision rehabilitation
services, n(%)

Mean (SD)
Range
Female
Male
Australia
Overseas
Urban
Rural
Age-related macular
degeneration
Glaucoma
Other
< 6/12 to 6/18
< 6/18 to 6/60
< 6/60
Yes
No

73.1 (21.1)
5093
6 (29%)
15 (71%)
14 (67%)
7 (33%)
15 (71%)
6 (29%)
8 (38%)
5
8
11
6
4
11
10

(24%)
(38%)
(52%)
(29%)
(19%)
(52%)
(48%)

during the program. This was followed by an open-ended question in

which participants were asked to describe their reasons for this choice.
Audio recordings of the interviews were transcribed and analysed following guidelines for the constant comparative method of qualitative
data analysis (Maykut and Morehouse, 1994; Rice and Ezzy, 1999). This
technique involved two researchers reading the transcripts and generating codes that reflected common themes in participants responses.
Transcripts were coded using the qualitative software NVIVO (Gibbs,
2002).
Vision rehabilitation professionals

Participants were 64 self-selected employees of a large vision rehabilitation service across Victoria, Australia (Vision Australia) who had read
an information leaflet about the proposed rehabilitation program and
responded to a mailed survey requesting their views.
The low vision rehabilitation professionals had been working with people with a vision impairment for periods ranging between 3 months
and 27 years (mean number of years = 8.3, SD = 7.2). The range of rehabilitation professionals included social welfare workers (n = 13, 20%),
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REES ET AL.: GROUP-BASED REHABILITATION

orientation and mobility instructors (n = 10, 16%), occupational therapists

(n = 7, 11%), orthoptists (n = 4, 6%), and recreation support workers
(n = 3, 5%), as well as service co-ordinators (n = 10, 16%) and service
managers (n = 7, 11%). Other participants included a psychologist,
teacher, and group facilitators.
As part of the survey, participants were asked if clients should be invited
to bring a significant other to all, or part, of the program. This was followed by an open-ended question in which participants were asked for
their views on both the advantages and disadvantages of involving significant others in the program. Responses were entered into NVIVO and
analysed using the same procedure reported above.

RESULTS
Participants with low vision
Of the 21 participants who were interested in attending a self-management course, 11 (52%) preferred to attend the course with someone,
eight (38%) preferred to attend the course on their own, while the
remaining two (10%) reported having no preference. Although the numbers of women in the study were low (n = 6), a high proportion (n = 5,
83%) preferred to attend the course with someone. Mens preferences
were more distributed with six (40%) preferring to attend alone, seven
(47%) preferring to attend with someone, and two (13%) reporting no
preference.
Reasons for involving significant others

Nine participants referred to having help with transport as a reason for

inviting a significant other, and six participants discussed how the significant other would help with mobility issues during the program. Four
participants desired to have company and to share the program with
someone, and three participants reported that including someone
would be beneficial in case they missed something or later forget information. Two participants specifically referred to having help with hearing, and one participant required help for other health problems.
Reasons for not involving significant others

Four felt that their family or friends were too busy to attend with them.
Two participants reported that they did not see the need to have someone attend with them and that they preferred to attend on their own.
Two participants commented that they did not have anyone that they
could invite.
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T H E B R I T I S H J O U R NA L O F V I S U A L I M PA I R M E N T 2 5 ( 2 )

Vision rehabilitation professionals

A large proportion of participants (85%) reported that clients should be
invited to bring a significant other to part (n = 30; 48%), or all (n = 23;
37%), of the program. The remaining participants (n = 9; 15%) preferred
clients to participate in the course without a significant other.
Advantages of involving significant others

Six main themes emerged concerning the advantages of involving significant others (See Table 2). The most common one was to improve the
significant others understanding of low vision (n = 58). This included
gaining insight into the challenges and difficulties associated with living with low vision as well as learning specific strategies to support or
assist a person with low vision, such as guiding strategies. A number of
participants noted that the significant other could support the client to
attend the program both practically, such as helping with transport or
other functional needs, as well as providing emotional support and
company (n = 24). Having someone accompanying clients to the program was seen as a way to help clients retain information that was discussed or taught in the course, as well as to help them implement the
ideas and strategies at home (n = 7). A few participants (n = 7) mentioned that the opportunity for significant others to participate in the
program may generate discussion between the pair, particularly regarding sensitive issues related to vision loss, and also give significant others a sense of being involved and working together as a team (n = 2).
Finally, a number of participants believed that the program was an
opportunity for significant others to gain support themselves by meeting
other people in a similar situation, expressing their feelings, and learning strategies to cope (n = 23).
Disadvantages of involving significant others

Five main themes emerged concerning the disadvantages of involving significant others (see Table 3). The most frequently reported disadvantage of
involving significant others in the program was the concern that their
presence may hinder clients openness within the program and disrupt
the group-bonding process (n = 45). It was suggested that clients may feel
more comfortable sharing experiences only with others with low vision
and they may be inhibited for fear of upsetting or offending their friend or
family member if they were present. Concerns that the significant other
would take over in group discussions for example, by talking on behalf of
clients or by focusing the program on their needs and concerns rather
than that of clients, were frequently mentioned (n = 18). A few participants suggested that involving significant others may result in further
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REES ET AL.: GROUP-BASED REHABILITATION

Table 2.

Advantages of involving significant others

Code
Improve
understanding
of low vision

No. of
supporting
quotes

No. of
participants
from which
supporting
quotes were
derived

70

58

Sample quotes
Those individuals
can gain a better
understanding of
how their loved
one is being affected
by sight loss.
Improving
understanding of
what they can assist
with and what not to
attempt to assist with.

Support client
attendance

25

24

Client may feel

more comfortable in
a strange environment
with a close person
around for support.
May make transport
easier if the driver is
invited to stay and
participate also.

Support for
significant
other

24

23

Meeting other
significant others
enhances their
understanding and
leaves them feeling
less isolated.
Resource for both
parties to learn where
to obtain help.

Retention and
reinforcement

10

Reinforcement of
ideas and coping
(continued)
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Table 2.

(continued)

No. of
supporting
Code

quotes

No. of
participants
from which
supporting
quotes were
derived

of ideas and
strategies

Promote
discussion

Sample quotes
strategies when
at home.
Can help remind
the person things they
may have forgotten.

Promote discussion
of sensitive topics
related to vision loss
between the person
and significant other.
Information sharing
and discussion which
may occur after
a session.

Sense of
involvement
Table 3.

Code
Hinders
client
openness

Sense of working
on the team.

Disadvantages of involving significant others

No. of
supporting
quotes

No. of
participants
from which
supporting
quotes were
derived

51

45

Sample quotes
The presence of
another person would
definitely hinder the
clients openness to
forming meaningful
rapport with other
clients. Yet, this is a
(continued)

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REES ET AL.: GROUP-BASED REHABILITATION

Table 3.

(continued)

Code

No. of
supporting
quotes

No. of
participants
from which
supporting
quotes were
derived

Sample quotes
powerful aspect of the
success of this type of
programme, from my
experience. The ongoing
camaraderie, support and
friendship beyond the
life of the programme
is a vital outcome
of the programme.
Some clients may be less
likely to openly share
some emotions involved
with vision loss if the
significant other is tied
to those emotions.

Overinvolvement
in discussions

18

18

Possible domination
of issues associated
with dealing with a
person with vision loss
rather than assisting
person with vision loss
be more independent.
Significant others often
speak on behalf of
their partner. So would
client be able to really
express how they feel?

Doesnt
promote
client
independence

Discourages
self dependence.
Could cause further
dependency.
(continued)
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T H E B R I T I S H J O U R NA L O F V I S U A L I M PA I R M E N T 2 5 ( 2 )

Table 3.

(continued)

No. of
supporting
quotes

No. of
participants
from which
supporting
quotes were
derived

Practicality
issues

If the meeting is not

well-structured, with
time allowed for general
discussion, the session
may run-overtime, given
that family members
may have plenty of
questions and be
curious (like the clients
themselves) about how
it is for others.

Confidentiality and
privacy
issues

No privacy when
discussing personal
issues.

Code

Sample quotes

dependency rather than promoting independence (n = 6). Concerns

regarding client privacy were also noted (n = 5). A number of practical difficulties were described including the difficulty in finding a suitable time
for everyone to be available to participate in the program, and the additional resources needed to run a larger group (n = 6). It was also felt that
the communication in larger groups involving significant others would be
harder to manage and would result in additional stress on the group facilitators.

DISCUSSION
This study has highlighted a number of potential benefits and pitfalls
associated with involving significant others in group-based rehabilitation
programs. Vision rehabilitation professionals were largely in favour of
including significant others in such programs and highlighted a number
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REES ET AL.: GROUP-BASED REHABILITATION

of advantages, including practical and emotional support during the program and subsequent encouragement with implementing skills and
strategies. Enhancing significant others understanding of low vision and
the communication between clients and their significant other were also
perceived advantages. Disadvantages largely focused on disrupting the
group bonding and interaction. Older adults with low vision reported
differing preferences for involving significant others in group-based rehabilitation programs. Although the majority were in favour, a number of
participants stated that they preferred to attend alone. In light of these
findings it is recommended that clients should be given the choice to
involve significant others in group-based rehabilitation programs. This
choice should also include whether to invite a family member or friend,
as both may play a role in rehabilitation (Kleinschmidt, 1996; Reinhardt,
1996; Travis et al., 2003). The element of choice is critical since insisting
on family involvement may result in clients declining rehabilitation services (McCabe et al., 2000).
It is clear that including significant others in group-based rehabilitation
programs requires careful planning and skilled facilitation to ensure that
their presence does not have a detrimental impact on the group process
or client involvement. Programs should be designed with this consideration in mind, for example setting clear group guidelines at the beginning
of the program and including activities and group work that require participants to interact with other group members. An alternative approach
may be to offer the opportunity to invite significant others to some, but
not all, sessions. With careful planning and facilitation the benefits of
involving significant others may be achieved whilst minimizing the
potential problems.
A number of vision rehabilitation professionals noted that significant others
may benefit from the program in terms of improving their understanding of
low vision as well as gaining support from others in the same situation. Low
vision has an impact on family life, roles and responsibilities. Research has
shown that family members have a poor understanding of low vision and may
show depressive symptomatology and care-giver strain (Goodman and
Shippy, 2002; Horowitz et al., 2004). In a study of support groups for partners
of adults with vision impairment, participants were found to value learning
from others in the same situation (Cimarolli et al., 2004). The support groups
were shown to improve participants understanding of their partners low
vision but did not impact on measures of depression or life satisfaction
(Cimarolli et al., 2004). It is possible that programs can be designed to address
the needs of both clients and those involved in their care. This study did not
explore the views and preferences of significant others themselves. The needs
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T H E B R I T I S H J O U R NA L O F V I S U A L I M PA I R M E N T 2 5 ( 2 )

of significant others and their motivation to be actively involved in rehabilitation programs requires further investigation.
This study is limited in that it was a small, qualitative study in which participants were asked for their hypothetical views regarding involving significant others in a group-based program. It is possible that actual
behavioural response may differ from participants stated preferences and
conclusions regarding the impact of involving significant others on
uptake and outcomes of group-based rehabilitation programs can not be
made. Also, little data was available regarding participants circumstances.
It is possible that general health and availability of social support impact on
participants need and desire to involve others in rehabilitation programs.
Whilst individuals with a range of ages, eye conditions and visual acuities
were included, the sample was predominately male. Although small in
numbers, female participants showed a tendency towards preferring to
invite a significant other to attend. It is therefore probable that a larger sample with an even distribution of genders would reflect a stronger preference
to involving significant others in group-based programs. Given the small
sample size and qualitative nature of this study, quantitative analysis to
determine factors associated with interest in involving significant others was
not feasible. This type of data would be helpful to aid planning and targeting of group-based programs to those who may benefit.
This study has raised a number of issues for further investigation. Firstly,
do clients actually invite significant others to attend group-based programs if given the opportunity, and what factors are associated with the
need and desire to involve others? Secondly, what are the needs of significant others and how can these be best met? Thirdly, what is the
impact on both clients and significant others of attending group-based
programs together or alone, and what factors influence these outcomes?
Outcomes measures of psychological wellbeing, adaptation and quality
of life need to be explored. Future quantitative studies should be
designed to determine the uptake, process outcomes of rehabilitation
programs tailored towards both clients and significant others.

Acknowledgements
Thanks to Jennifer Hassell for her advice regarding recruitment and the interview
process. Many thanks also to all the participants who shared their views with us.

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DR GWYN REES

Centre for Eye Research Australia

Department of Ophthalmology
University of Melbourne
Locked Bag 8 East Melbourne
Vic 8002, Australia
Email: grees@unimelb.edu.au

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