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DOI: 10.1177/0264619607076001

2007 25: 155British Journal of Visual ImpairmentG. Rees, C. Saw, M. Larizza, E. Lamoureux and J. Keeffe

adults with low vision?Should family and friends be involved in group-based rehabilitation programs for

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155

THE BRITISH JOURNAL OF VISUAL IMPAIRMENT

Copyright © 2007 SAGE Publications(Los Angeles, London, New Delhiand Singapore) Vol 25(2): 155–168DOI: 10. 1177/0264619607076001ARTICLE

BJVIShould family and friends beinvolved in group-basedrehabilitation programs foradults with low vision?

G. REES, C. SAW, M. LARIZZA, E. LAMOUREUXAND J . KEEFFE Centre for Eye Research Australia, University of

Melbourne, Department of Opthalmology

( J . KEEFFE is also with Vision CRC, Australia)

ABSTRACT This qualitative study investigates the views ofclients with low vision and vision rehabilitation professionals onthe involvement of family and friends in group-based rehabilita-tion programs. Both groups outlined advantages and disadvan-tages to involving significant others, and it is essential that clientsare given the choice. Future work is needed to examine theuptake, process and outcomes of rehabilitation programs inwhich clients are able to invite family and friends.

KEY WORDS adul t s , low v is ion, rehabi l i t a t ion

BACKGROUNDSocial support has been shown to be an important factor for older indi-viduals living with chronic health conditions (Cohen and Wills, 1985;Sarason et al., 1997). For older adults with vision impairment, the avail-ability of practical and emotional support from family and friends isimportant for psychological adaptation (Reinhardt, 1996, 2001;Reinhardt et al., 2006). Family support may encourage the uptake ofrehabilitation services and continued use of low vision devices (Moore,1984; Watson, 2001). Whilst the benefits of social support are widelyaccepted, negative consequences have also been acknowledged. Forexample, receiving practical support from others may lead to feelings ofhelplessness and dependence (Reinhardt, 2001; Reinhardt et al., 2006).Overprotective or highly anxious family members may thereforeimpede the rehabilitation process by reducing the client’s confidence or

at Alexandru Ioan Cuza on July 1, 2014jvi.sagepub.comDownloaded from


motivation for independence (Cimarolli et al., 2006; Moore, 1984).Negative interactions with family members are often reported bypeople with vision impairment and have been associated with depres-sion (Cimarolli and Boerner, 2005; Reinhardt, 2001). In a recent quali-tative study, Cimarolli and Boerner (2005) highlighted that the negativefamily interactions commonly reported by middle-aged adults withvision impairment most often reflected the family member’s lack ofunderstanding of the functional and psychological impact of visionimpairment.

It is clear that the understanding, attitudes and behaviours of family mem-bers and friends (hereafter ‘significant others’) influence the psychologi-cal well-being and adaptation of individuals with low vision. For thisreason, the involvement of significant others in vision rehabilitation hasbeen considered important (Moore, 1984; Travis et al., 2003). However,little is known about the frequency or degree of involvement of others inthe rehabilitation process and the impact of this involvement on clientsand their significant others. One recent trial was originally designed toexamine the impact of involving a family member in a vision rehabilita-tion program on client’s functioning (McCabe et al., 2000). Participants inthe study were randomly allocated to attend the rehabilitation programon their own, or with a family member. However, this process producedproblems in recruitment and retention as some participants reported thatthey did not want to involve family members in rehabilitation, andbecause some family members declined to be involved. A reduced sam-ple size meant that the study did not have sufficient power to detect a dif-ference in rehabilitation outcome between the groups.

The value of peer support in adaptation to vision loss has recently ledto the development of group-based programs for individuals with visionimpairment (Birk et al., 2004; Brody et al., 2005; Brody et al., 1999;Dahlin-Ivanoff et al., 1998; Eklund et al., 2004). Evaluations based onrandomized controlled trials suggest that group-based programs can beeffective in improving psychological well-being and functional out-comes 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 todate have not included significant others in group-based programs forvision impairment, although this is common in interventions for otherchronic health conditions such as arthritis, cancer and heart disease(Martire et al., 2004). Research suggests that interventions involvingfamily members can reduce care-giving burden and in some casesdecrease depressive symptoms reported by both family members andpatients (Martire et al., 2004).

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It is possible that involving significant others in group-based visionrehabilitation programs may improve their understanding of the impactof low vision and the rehabilitation process, and in turn help promotemore successful adaptation to vision impairment. However, the degreeto which clients wish to involve others in rehabilitation services isunclear. As part of the development of a new group-based rehabilitationprogram for low vision, we wished to explore this issue from the per-spective of clients with low vision and vision rehabilitation profession-als. The aim of the study was to investigate clients’ views regarding theinvolvement of significant others in a group-based rehabilitation pro-gram and the advantages and disadvantages perceived by vision reha-bilitation professionals.

METHODS

Participants and procedures

Participants with low visionParticipants with low vision were recruited from public and private eyeclinics in Melbourne, Australia. Participants were required to be overthe 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 lifeis affected with mild vision loss of < 6/12 (Hassell et al., 2006). Othercriteria for inclusion were fluency in English and the absence of cogni-tive or hearing deficits that would impact on the ability to participate inthe interview as judged by the interviewer. This study was part of awider qualitative interview study designed to explore the needs of peo-ple with low vision and to determine their interest in participating in agroup-based rehabilitation program. A full report regarding level ofinterest in such a program, barriers to uptake and views on the contentof a group-based rehabilitation program will be reported elsewhere. Wereport here on the 21 participants who stated that they were interestedin attending and their views specifically regarding the involvement of sig-nificant others in such a program. Demographics are outlined in Table 1.The sample included participants with a range of ages, different eyeconditions, different levels of visual acuity, and those who had, and hadnot, received vision rehabilitation services in the past.

Ethical approval for this project was received from the Human Researchand Ethics Committee of the Royal Victorian Eye and Ear Hospital.Semi-structured face to face interviews were conducted. Participantswere asked if they would prefer to attend the program on their own, orto have someone (for example, a close friend or relative) with them

REES ET AL.: GROUP-BASED REHABILITATION

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during the program. This was followed by an open-ended question inwhich participants were asked to describe their reasons for this choice.Audio recordings of the interviews were transcribed and analysed fol-lowing guidelines for the constant comparative method of qualitativedata analysis (Maykut and Morehouse, 1994; Rice and Ezzy, 1999). Thistechnique involved two researchers reading the transcripts and generat-ing codes that reflected common themes in participants’ responses.Transcripts were coded using the qualitative software NVIVO (Gibbs,2002).

Vision rehabilitation professionalsParticipants were 64 self-selected employees of a large vision rehabili-tation service across Victoria, Australia (Vision Australia) who had readan information leaflet about the proposed rehabilitation program andresponded to a mailed survey requesting their views.

The low vision rehabilitation professionals had been working with peo-ple with a vision impairment for periods ranging between 3 monthsand 27 years (mean number of years = 8.3, SD = 7.2). The range of reha-bilitation professionals included social welfare workers (n = 13, 20%),


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Table 1. The demographic and vision characteristics of 21 interviewparticipants with low vision

Age (years) Mean (SD) 73.1 (21.1)Range 50–93

Sex, n(%) Female 6 (29%)Male 15 (71%)

Location of birth, n(%) Australia 14 (67%)Overseas 7 (33%)

Current address, n(%) Urban 15 (71%)Rural 6 (29%)

Eye condition, n(%) Age-related macular 8 (38%)degenerationGlaucoma 5 (24%)Other 8 (38%)

Presenting distance <6/12 to 6/18 11 (52%)visual acuity, n(%) <6/18 to 6/60 6 (29%)

<6/60 4 (19%)Previously received Yes 11 (52%)vision rehabilitation No 10 (48%)services, n(%)



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 servicemanagers (n = 7, 11%). Other participants included a psychologist,teacher, and group facilitators.

As part of the survey, participants were asked if clients should be invitedto bring a significant other to all, or part, of the program. This was fol-lowed by an open-ended question in which participants were asked fortheir views on both the advantages and disadvantages of involving sig-nificant others in the program. Responses were entered into NVIVO andanalysed using the same procedure reported above.

RESULTS

Participants with low visionOf the 21 participants who were interested in attending a self-manage-ment course, 11 (52%) preferred to attend the course with someone,eight (38%) preferred to attend the course on their own, while theremaining two (10%) reported having no preference. Although the num-bers of women in the study were low (n = 6), a high proportion (n = 5,83%) preferred to attend the course with someone. Men’s preferenceswere more distributed with six (40%) preferring to attend alone, seven(47%) preferring to attend with someone, and two (13%) reporting nopreference.

Reasons for involving significant othersNine participants referred to having help with transport as a reason forinviting a significant other, and six participants discussed how the sig-nificant other would help with mobility issues during the program. Fourparticipants desired to have company and to share the program withsomeone, and three participants reported that including someonewould be beneficial in case they missed something or later forget infor-mation. Two participants specifically referred to having help with hear-ing, and one participant required help for other health problems.

Reasons for not involving significant othersFour 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 some-one attend with them and that they preferred to attend on their own.Two participants commented that they did not have anyone that theycould invite.


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Vision rehabilitation professionalsA large proportion of participants (85%) reported that clients should beinvited to bring a significant other to part (n = 30; 48%), or all (n = 23;37%), of the program. The remaining participants (n = 9; 15%) preferredclients to participate in the course without a significant other.

Advantages of involving significant othersSix main themes emerged concerning the advantages of involving sig-nificant others (See Table 2). The most common one was to improve thesignificant others’ understanding of low vision (n = 58). This includedgaining insight into the challenges and difficulties associated with liv-ing with low vision as well as learning specific strategies to support orassist a person with low vision, such as guiding strategies. A number ofparticipants noted that the significant other could support the client toattend the program both practically, such as helping with transport orother functional needs, as well as providing emotional support andcompany (n = 24). Having someone accompanying clients to the pro-gram was seen as a way to help clients retain information that was dis-cussed or taught in the course, as well as to help them implement theideas and strategies at home (n = 7). A few participants (n = 7) men-tioned that the opportunity for significant others to participate in theprogram may generate discussion between the pair, particularly regard-ing sensitive issues related to vision loss, and also give significant oth-ers a sense of being involved and working together as a team (n = 2).Finally, a number of participants believed that the program was anopportunity for significant others to gain support themselves by meetingother people in a similar situation, expressing their feelings, and learn-ing strategies to cope (n = 23).

Disadvantages of involving significant othersFive main themes emerged concerning the disadvantages of involving sig-nificant others (see Table 3). The most frequently reported disadvantage ofinvolving significant others in the program was the concern that theirpresence may hinder clients’ openness within the program and disruptthe group-bonding process (n = 45). It was suggested that clients may feelmore comfortable sharing experiences only with others with low visionand they may be inhibited for fear of upsetting or offending their friend orfamily member if they were present. Concerns that the significant otherwould take over in group discussions for example, by talking on behalf ofclients or by focusing the program on their needs and concerns ratherthan that of clients, were frequently mentioned (n = 18). A few partici-pants suggested that involving significant others may result in further


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Table 2. Advantages of involving significant others

No. ofparticipantsfrom which

No. of supportingsupporting quotes were

Code quotes derived Sample quotes

Improve 70 58 ‘Those individualsunderstanding can gain a betterof low vision understanding of

how their lovedone is being affectedby sight loss.’

‘Improving understanding of what they can assist with and what not toattempt to assist with.’

Support client 25 24 ‘Client may feelattendance more comfortable in

a strange environmentwith a close person around for support.’

‘May make transporteasier if the driver isinvited to stay andparticipate also.’

Support for 24 23 ‘Meeting othersignificant “significant others”other enhances their

understanding andleaves them feelingless isolated.’

‘Resource for bothparties to learn whereto obtain help.’

Retention and 10 7 ‘Reinforcement of reinforcement ideas and coping

(continued)




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Table 2. (continued)

No. ofparticipants

No. of from whichsupporting supporting

quotes wereCode quotes derived Sample quotes

of ideas and strategies whenstrategies at home.’

‘Can help remindthe person things theymay have forgotten.’

Promote 7 7 ‘Promote discussion discussion of sensitive topics

related to vision lossbetween the personand significant other.’

‘Information sharing and discussion which may occur after a session.’

Sense of 2 2 ‘Sense of workinginvolvement on the team.’

Table 3. Disadvantages of involving significant others




Hinders 51 45 ‘The presence ofclient another person wouldopenness definitely hinder the

client’s openness toforming meaningfulrapport with otherclients. Yet, this is a

(continued)




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powerful aspect of thesuccess of this type ofprogramme, from myexperience. The ongoingcamaraderie, support andfriendship beyond thelife of the programmeis a vital outcomeof the programme.’

‘Some clients may be lesslikely to openly sharesome emotions involvedwith vision loss if thesignificant other is tiedto those emotions.’

Over- 18 18 ‘Possible domination involvement of issues associatedin discussions with dealing with a

person with vision lossrather than assistingperson with vision lossbe more independent.’

‘Significant others oftenspeak on behalf oftheir partner. So wouldclient be able to reallyexpress how they feel?’

Doesn’t 6 6 ‘Discourages promote self dependence.’clientindependence ‘Could cause further

dependency.’

(continued)



dependency rather than promoting independence (n = 6). Concernsregarding client privacy were also noted (n = 5). A number of practical dif-ficulties were described including the difficulty in finding a suitable timefor everyone to be available to participate in the program, and the addi-tional resources needed to run a larger group (n = 6). It was also felt thatthe communication in larger groups involving significant others would beharder to manage and would result in additional stress on the group facil-itators.

DISCUSSIONThis study has highlighted a number of potential benefits and pitfallsassociated with involving significant others in group-based rehabilitationprograms. Vision rehabilitation professionals were largely in favour ofincluding significant others in such programs and highlighted a number


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Practicality 6 5 ‘If the meeting is notissues well-structured, with

time allowed for generaldiscussion, the sessionmay run-overtime, giventhat family membersmay have plenty ofquestions and becurious (like the clients themselves) about howit is for others.’

Confiden- 5 5 ‘No privacy whentiality and discussing personalprivacy issues.’issues



of advantages, including practical and emotional support during the pro-gram and subsequent encouragement with implementing skills andstrategies. Enhancing significant others’ understanding of low vision andthe communication between clients and their significant other were alsoperceived advantages. Disadvantages largely focused on disrupting thegroup bonding and interaction. Older adults with low vision reporteddiffering preferences for involving significant others in group-based reha-bilitation programs. Although the majority were in favour, a number ofparticipants stated that they preferred to attend alone. In light of thesefindings it is recommended that clients should be given the choice toinvolve significant others in group-based rehabilitation programs. Thischoice 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 insistingon family involvement may result in clients declining rehabilitation serv-ices (McCabe et al., 2000).

It is clear that including significant others in group-based rehabilitationprograms requires careful planning and skilled facilitation to ensure thattheir presence does not have a detrimental impact on the group processor client involvement. Programs should be designed with this considera-tion in mind, for example setting clear group guidelines at the beginningof the program and including activities and group work that require par-ticipants to interact with other group members. An alternative approachmay be to offer the opportunity to invite significant others to some, butnot all, sessions. With careful planning and facilitation the benefits ofinvolving significant others may be achieved whilst minimizing thepotential problems.

A number of vision rehabilitation professionals noted that significant othersmay benefit from the program in terms of improving their understanding oflow vision as well as gaining support from others in the same situation. Lowvision has an impact on family life, roles and responsibilities. Research hasshown that family members have a poor understanding of low vision and mayshow depressive symptomatology and care-giver strain (Goodman andShippy, 2002; Horowitz et al., 2004). In a study of support groups for partnersof adults with vision impairment, participants were found to value learningfrom others in the same situation (Cimarolli et al., 2004). The support groupswere shown to improve participants understanding of their partners lowvision but did not impact on measures of depression or life satisfaction(Cimarolli et al., 2004). It is possible that programs can be designed to addressthe needs of both clients and those involved in their care. This study did notexplore the views and preferences of significant others themselves. The needs


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of significant others and their motivation to be actively involved in rehabilita-tion programs requires further investigation.

This study is limited in that it was a small, qualitative study in which par-ticipants were asked for their hypothetical views regarding involving sig-nificant others in a group-based program. It is possible that actualbehavioural response may differ from participants stated preferences andconclusions regarding the impact of involving significant others onuptake and outcomes of group-based rehabilitation programs can not bemade. Also, little data was available regarding participants circumstances.It is possible that general health and availability of social support impact onparticipants need and desire to involve others in rehabilitation programs.Whilst individuals with a range of ages, eye conditions and visual acuitieswere included, the sample was predominately male. Although small innumbers, female participants showed a tendency towards preferring toinvite a significant other to attend. It is therefore probable that a larger sam-ple with an even distribution of genders would reflect a stronger preferenceto involving significant others in group-based programs. Given the smallsample size and qualitative nature of this study, quantitative analysis todetermine factors associated with interest in involving significant others wasnot feasible. This type of data would be helpful to aid planning and target-ing 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 pro-grams if given the opportunity, and what factors are associated with theneed and desire to involve others? Secondly, what are the needs of sig-nificant others and how can these be best met? Thirdly, what is theimpact on both clients and significant others of attending group-basedprograms together or alone, and what factors influence these outcomes?Outcomes measures of psychological wellbeing, adaptation and qualityof life need to be explored. Future quantitative studies should bedesigned to determine the uptake, process outcomes of rehabilitationprograms tailored towards both clients and significant others.

AcknowledgementsThanks to Jennifer Hassell for her advice regarding recruitment and the interviewprocess. Many thanks also to all the participants who shared their views with us.

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DR GWYN REES

Centre for Eye Research AustraliaDepartment of OphthalmologyUniversity of MelbourneLocked Bag 8 East MelbourneVic 8002, AustraliaEmail: [email protected]


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