Adults with complex communication needs who volunteer (summary)



This summary looks at personal experiences of adults volunteering, with their complex communication needs creating a barrier.

Aim of the study: to find out about the personal experiences of volunteering for people who use AAC.

Why was this an important topic? Other studies have found that adults who use AAC want to volunteer but are not well represented across the volunteering workforce. Previous research has identified barriers to volunteering for people with disabilities but not specifically communication disabilities. Barriers include: being underestimated, staff training and knowledge, being given meaningful roles, access, literacy levels and negative attitudes.

How did they look at volunteering experiences for those with communication needs?

Some background: The study was based in Australia. The authors interviewed 24 adults (12 women and 12 men) who had experience of a formal volunteering role in their adulthood. Those interviewed ranged in ages between 20 and 70. During the interview process 14 were actively involved in volunteering and 10 were not looking for further voluntary opportunities. 18 people used an AAC system as their main method of communication, whilst 6 preferred to use their AAC system to support their own speech.

Voluntary roles experienced included: committee work, broadcasting, presenting on disability issues, mentoring and roles in hospitals, religious organisations and performing arts groups.

What happened in this study? The people were interviewed two times. Firstly, to discuss their own experiences. Secondly, to share some other interviewees’ experiences and get reactions and comments on these issues. Comments and experiences were coded into themes. This is a type of analysis that allows lots of descriptive comments from interviews to be summarised into the key points, commonly called themes.

What did they find? The themes were summarised into three main categories (i) control, (ii) that is life, and (iii) making a difference.

The most important element was a sense of control over what they participated in and how they participated. This was positively and negatively affected by elements summarised under (ii) that is life and (iii) making a difference. For example, not having control over which staff supported them during volunteering had both positive and negative effects. Or access issues like unreliable taxis making it impossible to be able to do their hospital radio broadcast. These two examples were often described as ‘that is life’ by the interviewees. Making a difference was often about seeing the positive impact they could have on someone, e.g. mentoring activities enabled a parent to see that their child could potentially use a powered chair.

The paper provides lots of examples under these three categories. Throughout the paper one thing that recurs is the impact of a network of family and friends supporting the volunteer, for example, having someone to provide emotional support if something stressful has happened whilst volunteering.

Benefits: All felt that there were more positive than negative aspects to volunteering and these included: making a difference, making friends, increasing in confidence and self-esteem, and improving communication skills. Feelings of success seemed to be a very personal judgment.  Many saw volunteering as a way to get more involved in and to be part of their community.

Challenges: All felt that their communication needs had made it very difficult to get volunteering opportunities and to keep control of what they did and when.

Conclusions: Having complex communication needs seems to add an additional barrier. The study recommends that such volunteers need support with their communication, even although they may not be receiving formal support through speech and language therapy. This has implications for service provision and delivery. They also recommended that similar interviews are completed with staff who co-ordinate volunteering activities and users of voluntary services to understand their perspectives and experiences.

Things you may want to look into: volunteering opportunities


Trembath, Balandin, Togher, Stancliffe


Disability & Rehabilitation Journal, 2010

© Sept 2012