GROUP LANGUAGE THERAPY IN HUNT1NGTON DISEASE

The following is an edited version of "Maximising Participation in Huntington Disease Through Group Language Therapy" by Maria Berarducci, Speech Pathologist, Sacred Heart Rehabilitation Service, St Vincent's Hospital; Emma Power and Alison Anderson, Speech Pathologists, NSW Huntington Disease Service, Lottie Stewart Hospital; and Dr Leanne Togher, Postdoctoral Researcher, School of Communication Sciences and Disorders, Faculty of Health Sciences, The University of Sydney.

The original article is from ACQuiring Knowledge in Speech, Language and Hearing, Volume 5, No1, 2003.

The following is an outline of our experiences conducting a communication group for people with Huntington disease (HD) living in a residential care facility. Working with people with HD can be both challenging and rewarding. Managing the diversity and changing symptoms in this unique population can contribute to an increase in participation in activities of life.

The interaction of the many diverse symptoms present in HD can make enhancing communication and safe swallowing challenging. However, the speech pathologist's role is to assist people with HD to maximally participate in activities of life as described by the World Health Organization (WHO, 2001). We established a communication group to meet language and participation goals while evaluating discourse, self-perceptions and participant satisfaction of people with HD living in a residential care facility.

Communication and HD

With up to 88% of people affected by HD requiring long-term care facilities (Nance & Saunders, 1996), it is valuable to explore the stimulation of communication skills and treatment in this environment. Although changes in language have been reported in the literature there is a lack of information describing therapeutic treatments for language difficulties in HD, particularly group therapy treatments.

Communication group

We recently conducted a communication group at LSH twice weekly (45-60 minutes per session) over 5 weeks. The aim of the group was to facilitate and stimulate language abilities. This included working on comprehension, providing increased opportunities for communication, and promoting conversational skills in a supported environment. Therapy also aimed to increase instances of initiation, participation and interaction by group members in order to develop increased confidence in communication, and maintain social and pragmatic skills. The group was also established to assist in the prevention of isolation and premature deterioration of communication skills. Two speech pathologists were required to conduct the group so participants' physical, cognitive and behavioural needs could be met. At the commencement of each session, a warm-up activity was conducted. This usually involved extending conversations already begun in the hallway on the way to the session, or a discussion of activities familiar to the participants being undertaken within the HD residential unit (eg a diversional therapy outing). Occasionally a structured naming activity was utilised.

Components of the sessions were regulated to provide structure and routine. This was achieved by including two activities which were used in most sessions. In the initial group session participants selected the two activities from a choice of several possibilities. The first activity they chose involved compiling a photo album for the residential unit using photos taken over a 12-month period. This stimulated discussion about the activities in the photos, the time sequence of events, and ordering and placement of photos in the album. The second activity involved gathering biographical information about each participant. Its purpose was to find common interests, increase familiarity and knowledge among participants. Information was placed into a table which was drawn onto a large whiteboard. This was gradually completed over the course of the group. The goal of this activity was for participants to look for gaps in information and ask the relevant person for the information. Informal discussions using a range of topics were conducted following the structured activities. Examples of stimuli included newspaper stories, discussion of issues/sharing opinions on topics such as on stem-cell research, travel, personal stories related to items brought in by participants (eg birthday cards) and interactive tasks (eg selecting Christmas gifts from catalogues). Throughout the sessions both speech pathologists interacted with the group. They assisted the participants by clarifying responses, particularly those with reduced intelligibility, providing prompts for improving pragmatic behaviour, extending communication and facilitating participant involvement.

Group participants

The group initially consisted of six participants. One participant withdrew because the time of the group meeting clashed with a meeting with a visitor. The participants presented with various symptoms of HD. All participants were rated by a neurologist as either 4 or 5 on the 5-point Unified Huntington Disease Rating Scale (UHDRS) (The Huntington Study Group, 1996), thus indicating severe impairment. Participants demonstrated a range of communicative impairments and severity levels.

Communication analysis

Communication interaction within the group was assessed pre- and post-therapy using a problem-solving task. During this task participants were asked to discuss among themselves the name and function of several uncommon objects. The data obtained from this task were analysed and each participant completed psychosocial and communication self-perception rating scales before and after therapy. A post-therapy focus group was also conducted during which participants completed a satisfaction survey. All group sessions were videotaped.

Psychosocial and communication self-perception

Prior to running the communication group, we wished to have an understanding of each participant's perception of their communication and how it impacted on their lives. There is a lack of literature describing self-perception of communication in HD and little investigation has occurred determining which communication or psychosocial measures are most appropriate for individuals with HD.

In our group the self-perceptions of communication and psychosocial aspects were evaluated using a set of 11 questions. These were given pre- and post-therapy. Because there are no measures available specifically designed for people with HD, some questions were adapted from existing scales for other populations. The questions were presented verbally and visually. They were phrased positively and negatively and repeated if necessary. Questions relating to participants' self-perception of psychosocial aspects of communication included:

"Do you think you have difficulties with your speaking?" and "Do people spend enough time talking with you ?". Questions targeting participants' self-perception of communication skills related to how the person with HD perceived their speech and language abilities. They included questions such as "Is it hard for you to start a conversation?" and "Do you find it easy to make yourself understood when talking to others?". Participants gave their responses verbally or by pointing to a 3-point rating scale (almost always, sometimes, almost never). Obtaining perspectives of staff in the residential unit and family members was considered desirable but due to various complicating factors (eg family breakdown/distance) was not viable at the time of this study.

The responses from the questions were difficult to interpret, it was also difficult to reliably establish differences in pre- and post-therapy. Factors that contributed to this included reduced insight of some participants, cognitive/attention difficulties and perseveration. Additionally, the 3- point rating scale may not have been sensitive enough to change,

Post-therapy focus group

A post-therapy focus group aimed to evaluate whether the participants found the group satisfying and beneficial. The survey consisted of open- and closed-ended questions. These were presented verbally and visually. Examples of questions included "What was the best thing about being in the group?", "What was the worst thing about being in the group?" and "Did you get your message across better after being in the group?". Participants were given as much time as needed to respond and questions were repeated when required.

Responses from the participants indicated that they were very positive about the therapy group. Participants demonstrated difficulties in expanding on open-ended questions due to language or speech difficulties and some participants required "warm-up" time for these. Due to memory difficulties some participants might have only been able to relate questions to the most recent events rather than the whole therapy program. It may have been more effective to have sought feedback about each group session rather than at the end of the program. This would have enabled the researchers to track ratings over time. This method would also have given participants the opportunity to relate answers to more concrete and recent events. It was clear that participants were aware that they were being given an opportunity to have their say  and used their own verbal or non-verbal methods to indicate willingness/ keenness to participate in the feedback process. For example, one participant left the group discussion for his hourly "smoko", then initiated his own return to the group and continued his participation. Overall, behavioural observations of participants were consistent with their responses and participation,

Observations related to satisfaction and communication

Behavioural observations were made during therapy. These complemented the more formal measures discussed above. The observed behaviours indicated that participants were willing to be involved in a group again once the program was completed. For example, one participant continued to ask "When will the next group be?" for six months after completion. Casual conversations among participants on the way to group therapy also reflected therapy gains.

Changes in social communication were noted. Staff in the residential unit observed that one participant spent more time in communal areas post-therapy rather than isolated in his own room. Towards the end of the group and following completion, the speech pathologists noted that three participants would deliberately approach and initiate communication with them whenever they entered the unit. This type of interaction continues to date and was not observed before the group therapy was conducted. Future studies will seek to capture behavioural observations in order to complement more formal evaluations and become part of a more multidimensional assessment of satisfaction.

Issues for now and the future

It is imperative that the diverse communicative, motor, cognitive and psychological symptoms accompanying HD be considered when facilitating involvement in communication groups. This preliminary study aimed to assess the feasibility and potential benefits of conducting a communication group with this population. It is acknowledged, however, that increased multidimensional communication/psychosocial assessment would provide better understanding of potential benefits.

Although existing measures are available for other populations, adaptation and research will be required to take into account the unique contribution of symptoms in HD. We also concluded that resident-to-resident communication requires further investigation to establish a better understanding of the interactional nature of communication between individuals with HD. We observed that much of the spontaneous communication occurred in the halls on the way to group therapy. Capturing more information about these interactions will assist us in providing better opportunities for naturalistic communication in a residential setting. The speech pathologists on the Huntington Outreach Team aim to establish more frequent communication groups for people

with HD.

Editor's Note: Appreciation is extended to the authors for permission to print this edited version.