[Section Voices: Research Voices]
By Ju-young Lee (Australia) & Katrina McFerran (Australia)
Facilitating the expression of preferences and choices of non-verbal adults who have profound and multiple disabilities is important yet challenging. The present research project aimed to examine whether consistent opportunities for expressing song-choices within music therapy resulted in an improvement in communication abilities of five females with profound and multiple disabilities. A multiple case study design was used. Each participant attended weekly thirty-minute sessions comprising three song-preference assessment sessions followed by ten song-choice intervention sessions. Affective responses to songs in the song-preference assessment were analyzed to identify each participant’s preferred songs. Four song-choice opportunities consisting of a pair of preferred and less-preferred songs were offered during the intervention sessions, and intentional choice-making behaviors were facilitated. The descriptive video-analysis of the sessions shows that the participants were able to indicate consistent preferences for songs, make intentional choices of songs, and improve communication skills throughout the ten intervention sessions. Two participants developed clear choice-making skills, such as selecting a preferred song-card from two options and alternating eye-gaze between a song-card and the researcher. The other three participants demonstrated idiosyncratic but clear intentional behaviors using body movements, facial expressions, and vocalizations to indicate choices of preferred songs. Inter-rater reliability was calculated. These results suggest that some adults with profound and multiple disabilities are capable of improving non-verbal communication skills when appropriate interventions and strategies are provided and also highlight the potential of music therapy to promote communication development of these individuals.
Keywords: Adults with profound and multiple disabilities, preference and choice, song-preference assessment, song-choice, intentional communication
Multiple disability refers to a complex condition of more than two major disabilities in physical, intellectual, sensory, and medical areas (Bigge, Best, & Heller, 2001; Mednick, 2007). There is no typical condition of multiple disabilities, as a variety of disorders affect individuals in different ways (Mednick, 2007). Individuals with profound and multiple disabilities typically present with profound neuromotor dysfunctions and profound cognitive disabilities (intelligence quotient level between 0 and 20) and often have sensory impairments and medical problems, such as seizures, respiratory problems and feeding problems (Nakken & Vlaskamp 2002). Terms such as "severe to profound developmental disabilities" and "severe and multiple learning disabilities" have been used interchangeably with "profound and multiple disabilities" in recent literature.
People who have profound and multiple disabilities are non-verbal and express their emotions and needs in unconventional ways (Porter, Ouvry, Morgan, & Downs, 2001). They display idiosyncratic eye gazes, facial expressions, body movements, and vocalizations (Grove, Bunning, Porter, & Olsson, 1999; Hogg, Reeves, Roberts, & Mudford, 2001). As the idiosyncratic expressions are often brief and subtle, it is common for these to go unrecognized. Also, physical limitations and intense efforts to coordinate movements prevent the individuals with profound and multiple disabilities from responding clearly and consistently to their caregivers (Porter, et al., 2001). Thus, communicating with individuals with profound and multiple disabilities can be challenging.
To effectively communicate with individuals who have profound and multiple disabilities, identifying each individual’s unique behavior patterns and the meanings is essential. Several studies analyzed the idiosyncratic affective responses of adults with profound and multiple disabilities (Green & Reid 1996; Petry & Maes 2006; Smith, Bihm, Tavkar, & Sturmey, 2005). Petry and Maes (2006) observed six participants’ affective responses and produced individualized profiles of the response patterns. Green and Reid (1996) analyzed five participants’ approach and avoidance behaviors to different stimuli and examined whether happiness responses were increased when participants were provided with preferred items. Similarly, Smith et al. (2005) provided nine participants with various items and activities and categorized their behaviors into approach/avoidance and happiness/unhappiness using a stimulus preference coding system. Based on the results of these studies, it seems possible to classify the idiosyncratic behaviors of adults with profound and multiple disabilities into four categories of approach/acceptance, avoidance/rejection, happiness/pleasure, and unhappiness/displeasure. These terms can be used interchangeably for similar behaviors. Table 1 summarizes the working definitions of the four behavior categories as extracted from two studies.
|Basic response mode||Definition|
|Approach/Acceptance||Persons typically approach a stimulus by making a movement toward the item and possibly touching it. Movement towards a stimulus may also include turning or reaching in the direction of the item or using it in the way observers would expect to be used. (Smith et al, 2005, p. 299)|
|Avoidance/Rejection||Persons typically avoid a stimulus by turning away or pushing the item away. More subtle movements, such as shutting one’s eyes and keeping them closed in the presence of a stimulus, might also be classified as avoidance behaviors. (Smith et al, 2005, p. 299)|
|Happiness/Pleasure||Any facial expression or vocalization typically considered to be an indicator of happiness among people without disabilities including smiling, laughing and yelling while smiling (Green & Reid 1996, p.69)|
|Unhappiness/Displeasure||Any facial expression or vocalization typically considered to be an indicator of unhappiness among people without disabilities such as frowning, grimacing, crying, and yelling without smiling (Green & Reid 1996, p. 69)|
The four basic response modes in the Table 1 are related to the main ideas of preference and choice in the current study. For example, preference is defined as “subjective liking or disliking of a particular item or person” (Kearney & McKnight 1997, p. 219), and the behaviors classified as "happiness/pleasure" in the Table 1, such as smiling, laughing, and yelling while smiling illustrate how happiness or pleasure might be portrayed (Green & Reid 1996, p. 69). Choice “refers to the act of selecting an item or activity from an array of options at a particular moment in time” (Cannella, O’Reilly, & Lancioni, 2005, p. 2). Selecting a preferred item over a non-preferred item is a logical and intentional behavior that indicates a choice, and these responses are likely to be physical as illustrated in the Table 1 under "approach/acceptance."
The effects of preference and choice on individuals with profound and multiple disabilities have been studied in the field of disability since 1970’s (Cannella et al. 2005; Kearney & McKnight 1997; Lancioni, O’Reilly, & Emerson, 1996). It was believed that facilitating preference and choice would motivate communication desires of the individuals. A variety of stimuli, including food and favorite items were used. Two reviews of these studies have concluded that adults with profound and multiple disabilities can consistently display preferences, make choices when given opportunities and develop desired positive behaviors (Cannella et al. 2005; Lancioni et al. 1996). However, live music has not been used and the effect of music therapy interventions concerning preference and choice of songs has not been studied.
In the field of music therapy, the technique of facilitating a client’s song-choice and sharing the chosen song is frequently used. Bruscia (1998) defines a song-choice as “the client selecting and listening to favorite or preferred songs, or songs in which she/he has a strong identification or connection” (p. 124). Meadows (1997) considers contingent listening as one of the receptive methods for children with profound and multiple disabilities in music therapy and explains it as follows:
Contingent music listening refers to the therapist’s application of live or recorded music to reinforce or reward appropriate non-music behavior. Typically, the music therapist will identify, shape, reinforce, and reward a desired behavior(s), with the music functioning in the last two elements of the sequence (p. 13).
In the current study, the sequence identified by Meadows was applied using preferred songs to develop intentional communication skills.
Elefant’s (2002) study provides evidence that opportunities for making song-choices did contribute to improved communication skills of seven girls with Retts Syndrome, a degenerative disorder leading to an overall decline in cognitive function. Working to counter the anticipated decline in abilities, the participants were offered with song-choice opportunities on two occasions, and if participants confirmed the choice of song again at the second song-choice opportunity, the chosen song was considered intentional and sung. Video analysis showed that intentional communication behaviors had improved at the conclusion of the study, with clear choice-making behaviors, such as picking up the song-card, being evidenced.
Improving communication skills of individuals who have severe/profound and multiple disabilities have been frequently reported in music therapy (McFerran, Lee, Steele, & Bialocerkowski, 2009). The goals for the communication skills include “the entire range from pre-in-tensional skills such as awareness and engagement, through to responding to verbal instructions with actions” (McFerran et al., 2009, pp. 54-55). Increased intentional communication skills have been demonstrated in improvisational-based music therapy (Rainey Perry, 1999a, 1999b, 2003; Rainey Perry & Ri, 2005). Improved communication functions, such as greeting and responding to verbal instructions have been confirmed (Braithwaite & Sigafoos 1998; DeBedout & Worden 2006; Oldfield & Adams 1990; Gilboa & Roginsky 2010). Several clinical case studies have described the interactive process of music therapy with adults with severe/profound and multiple disabilities and these were aimed to engage and interact with the clients through music (Agrotou, 1994; Graham, 2004; Hooper, 2001; Watson, 2007).
Despite the existence of some studies that specifically investigate communication improvements, a bias exists towards younger and higher functioning individuals (McFerran, et al., 2009). Prior to this investigation, there were no empirical studies of adults with profound and multiple disabilities, specifically focusing on the improvement of communication skills in music therapy, published in English-language refereed journals. To address the gaps in the music therapy research, the following questions were developed in relation to the preference and choice studies in the field of adult disability:
A multiple case study design was used for the study. According to Yin (2003), a case study design allows researchers to investigate a contemporary phenomenon while maintaining the context in a real-life setting. This design is also considered useful to exam “how” certain interventions work in music therapy situations (Smeijsters, 2005). Due to its non-experimental character, this design has been a common method in social science areas, such as psychology, social work, and sociology (Yin, 2003). Working from these principles, it was possible to conduct a multiple case study in a natural clinical situation with participants who had previously attended the researcher’s music therapy sessions. Each of the five participants with profound and multiple disabilities were considered as a valuable single case unit, and this enabled the researchers to seek rich information on the nature of each individual’s communication strategies. The value of recruiting one’s own clients has been also highlighted by Elefant (2002), because the individuals with severe and profound disabilities need a long acclimatization period to adjust to a new situation and person, and the clinicians also need to be familiar with the idiosyncratic communication behaviors of the individuals. Despite this supporting argument for using one’s own clients, some potential bias of the researcher who had experience as a clinician with the participants was still anticipated. To minimize this issue, the researchers maintained a treatment manual to document details about conducting the song-preference and intervention sessions prior to the data collection. Inter-reliability was also calculated. Arguably, because this study involved the researcher’s own clients, it was possible to measure the natural therapeutic effects of the intervention with minimum manipulation of the real clinical situation.
Five females with profound and multiple disabilities attended three song-preference assessment sessions and ten song-choice intervention sessions over 13 weeks. The participants’ ages ranged from 23 to 57 years, and the mean age was 45.2 years. They were recruited from a daycare center, where music therapy was provided by the first author, as they met inclusion criteria and previously showed interest and enjoyment in music therapy sessions. All participants involved in this study were familiar with the researcher. Inclusion criteria included stage 2 or 3 of communication abilities as rated on the triple C checklist (Bloomberg & West, 1999, see Appendix 1). Individuals were excluded if they presented 1) intentional communication, 2) unstable behavioral states (stage 1 on the triple C checklist), 3) severe hearing impairment, or 4) behaviors associated with autism. Table 2 provides detailed participant information about each woman. As the participants were unable to understand the concept and procedure of the research project and give consent due to their limited intellectual abilities, information sheets and consent forms were sent to the parents or the guardians of each participant to explain the research project and gain consent for the participant to participate in the research. Ethics approval for the study was granted through The University of Melbourne (Project no. 0722263.1).
(Triple C Checklist)
|P1||49||Profound Intellectual Disability, Cerebral Palsy, Epilepsy, Self-Injurious Behaviors||Stage3 Facial Expression, Eye-Contact, Body Gesture|
|P2||53||Profound Intellectual Disability, Cerebral Palsy||Stage 3 Facial Expression, Eye-Contact, Vocalization|
|P3||44||Down Syndrome, Physical disability, Visual impairment (legally blind), Hypothyroidism (deteriorating liver function)||Stage 2 Vocalization, Body posture (usually cowering and clocking face)|
|P4||57||Profound Intellectual Disability, Scoliosis, Poor lung capacity (due to curvature of spine)||Stage 2 Facial Expression, Body Posture (usually cowering and clocking face)|
|P5||23||Profound Intellectual Disability, Cerebral Palsy, Epilepsy, Visual Impairment (Cortical Vision Impairment)||Stage 2 Facial Expression, Vocalization|
Song-preference assessment sessions were conducted weekly over three weeks, lasting thirty minutes each. The purpose of the song-preference assessment was to identify each participant’s preferred and less-preferred songs and document each participant’s unique responses to them. A set of eight different songs was selected for each participant based on individual music profiles generated from each of their music therapy histories. Three songs were categorized as possible favourite songs, three were familiar songs often played in group sessions but not noticeable favorites of the participant, and two were new songs that had not previously been played in the music therapy sessions.
The researcher sang eight songs with guitar accompaniment in the same order in every song-preference assessment session. The order was selected initially based on cycling through contrasting musical genres that would clearly distinguish one song from the next. The researcher did not engage or interact with the participants whilst singing the songs to minimize the effect of researcher’s response to the song and to observe the participant’s uninfluenced response. The song-preference assessment sessions were all video-taped.
For data analysis, the researcher specifically designed a song-preference assessment form for this study. This enabled the researcher to categorize the participants’ responses into four different modes: acceptance, avoidance, pleasure, and displeasure based on the four basic response models of adults with profound and multiple disabilities (see Table 1). After observing responses to each song, the researcher described the responses under the appropriate categories and gave each category a numeric score: 1 for acceptance, -1 for avoidance, 2 for pleasure, and -2 for displeasure. The total score of each song was then calculated and ranked after three sessions. The four songs with the highest scores became the participant’s preferred songs, and the four songs with the lowest scores became the participant’s less-preferred songs.
Song-choice intervention sessions also lasted for approximately thirty minutes and were conducted on a weekly basis for ten weeks. Treatment days and time remained as consistent as possible for each participant. The total number of sessions was considered to be the critical measure (Gold, Wigram, & Voracek, 2007), and therefore if a participant were absent for one week they received two sessions in the following week spread as far apart as possible. All participants received a total of ten intervention sessions. The intervention procedure is described below.
Set up. The researcher brought each participant to the music therapy room after related equipment for the session, such as video camera, guitar, music stand, and song cards were prepared. The researcher placed the participant in an appropriate place facing the therapist’s chair and adjusted the video camera to capture the participant at an effective angle.
Hello song. Once the video start button was pushed, the researcher sang the familiar hello song that was used for all music therapy sessions in the center. Any responses by the participant to the hello song, such as vocalizations and eye-contact were immediately responded by the researcher. The researcher would sometimes imitate sounds that participants produced and develop this into turn taking as part of the hello song to establish and build the communicative relationship with the participant.
Four song-choice opportunities. When the participant was ready for the intervention, as seen by a relaxed and still body posture and facial expression, the song-choice procedure was explained verbally. Although it is likely that the participants did not fully understand this explanation, it was considered to be a polite and respectful introduction, and some participants may have understood some parts. In each session, the participants were given four song-choice opportunities, and each song-choice opportunity was made up of one preferred and one less-preferred song, based on the results of the song preference assessment. A randomization procedure, using one coin and two hats, was used to establish the precise sequence for the pairing of the four preferred and the four less-preferred songs, consisting of all eight songs, in each session. The procedure for presentation of songs is described below as steps.
Step 5 was considered to be the first attempt of each song-choice opportunity and success was rewarded verbally and musically, with opportunities for active musical interaction being provided immediately. Failure to make a clear choice at the first attempt meant that several further cycles were offered until a confirmed choice was made. For Participants 1, 2, and 4, song-cards were used to foster recognition of the songs, while Participants 3 and 5 relied on the researcher’s verbal and musical presentation because of their vision impairments. All sessions were video-taped.
Good-bye song. The sessions were finished with a familiar good-bye song, and the researcher expressed her appreciation for the participation.
The researcher tried to target a particular behavior for each participant to foster the development of intentional behaviors. Based on the four basic response modes in the Table 1, the researcher considered affective responses, such as happiness/pleasure and unhappiness/displeasure, as behaviors for expressing preferences and intentional behaviors, such as approach/acceptance and avoidance/rejection as behaviors for indicating choices. Thus, when the participants seemed to display affective responses to songs as they responded during the song-preference assessment sessions, the researcher did not accept this as a choice to facilitate more intentional behaviors. For this, the researcher repeatedly provided verbal comments, such as “that was not a clear choice. Can you look at a song-card you like (between two)?” for Participant 1, and “you cannot pick up two song-cards. Can you pick up only one song-card?” for Participant 2. These individualized comments were provided repeatedly and consistently for each and every song-choice trial until the desired choice-making behavior occurred. In this way, the participants seemed to understand that they needed to do something different to listen to the preferred song despite not being able to understand the verbal instructions fully.
As the researcher went through each clip she systematically noted: details of songs provided, the interactions between the participant and the researcher during each song-choice procedure, and songs chosen by the participant on a song-choice intervention analysis form developed for this study (see Appendix 2 for an example). The interactions included the researcher’s verbal and physical instructions and the participant’s communicative responses to them. Intentional choice was defined when a participant selected a preferred song that was identified at the song-preference assessment. A figure for intentional choice-making was then calculated based on the number of preferred songs chosen out of the total number of song-choices made in the song-choice intervention sessions for each participant. To examine a communication improvement, the results of the first three and last three intervention sessions of each participant were compared. This was a post hoc consideration, and the results need to have limited conclusions. However, this comparison between the time points was assumed to reveal any improvements in participants’ communication skills. This strategy was also preferred to the multiple probe designs sometimes used by researchers to reduce the amount of video analysis (Murphy & Bryan 1980).
Inter-rater reliability was calculated to ensure that song-choice interventions were conducted without errors, and the researcher appropriately validated the participant’s choice-making behaviors without bias. A registered music therapist who was familiar with adult clients with profound and multiple disabilities was invited in the study as a second observer. Interpretation of the idiosyncratic communication behaviors of adults with profound and multiple disability can be challenging for someone who is not familiar with these behaviors, so working with the observer who was experienced with this kind of behaviors was important. The second observer monitored the video clips of 52 song-choice opportunities in 13 sessions constituting 25 % of the total data. The sessions were randomly selected, and the details are as follows: session 1, 4, and 6 for Participant 1; session 4, 5, and 6 for Participant 2; session 1, 4, and 9 for Participant 3; session 4 and 9 for Participant 4; and session 6 and 7 for Participant 5. The second-observer watched the interactions between the participant and the researcher during each song-choice opportunity just before the researcher made a decision about the result of the song-choice. Without knowing the researcher’s interpretation of the behaviors, the second observer recorded the songs chosen by the participant, either preferred or less-preferred. The number of agreements on the choices made between the researcher and the observer was calculated out of the total song-choice opportunities observed by the second observer. Then these numbers were calculated into a percentage, and Cohen’s Kappa coefficient was calculated to gain a precise rate of agreement including any agreement made by chance.
The results of the current study are presented regarding the three research questions: (a) whether the five females with profound and multiple disabilities expressed consistent preferences on songs in the song-preference assessment, (b) whether they made intentional choices, and (c) whether they improved the communication skills through attending the ten song-choice intervention sessions. The results of individual participants are reported as well.
Each participant’s affective responses to eight songs throughout the three song-preference assessment sessions were descriptively analyzed and documented on the song-preference assessment form. The participants displayed both positive and negative affective responses to songs. Typical positive responses taken to indicate preferred songs were smiling, laughing, eye-gazing, producing happy vocal sounds, and rocking body parts rhythmically. The negative responses to those songs classified as less-preferred included frowning, displaying disinterest by throwing a song-card away, looking around the room, and physical cowering or retreating. Each participant’s affective responses to the two most preferred songs and the two least preferred songs are reported in Table 3. This table also displays information about song titles and total number of times that they were chosen by each participant throughout the ten song-choice intervention sessions.
|Participant||Song titles||Number of times the song chosen||Affective response|
|P1||Two most preferred songs||1. Rock around the clock (Freedman & Myers, 1952)||10||Smiling & rocking the body rhythmically|
|2. I do I do I do I do I do (Andersson, Anderson & Ulvaeus, 1975)||3|
|Two least preferred songs||C. We will rock you (May, 1977)||2||Displaying disinterest such as looking around the room and throwing out the song-cards|
|D. Love me tender (Presley & Matson 1956)||3|
|P2||Two most preferred songs||1. Yellow Submarine (Lennon & McCartney, 1966)||9||Making eye-contact, rocking the body parts, & vocalizing|
|2. Morningtown ride (Reynolds, 1957)||5|
|Two least preferred songs||C. Over the rainbow (Arlen, 1939)||2||Grabbing and pushing the guitar down or away & fleeting signs of engagement|
|D. Love me tender (Presley & Matson, 1956)||4|
|P3||Two most preferred songs||1. You are still the one (Lange, 1998)||7||More smiling, active rocking the upper body back and forth rhythmically & vocalizing|
|2. I do I do I do I do I do (Andersson, Anderson & Ulvaeus, 1975)||5|
|Two least preferred songs||We will rock you (May, 1977)||4||Less smiling, passive rocking & less vocalizing|
|D. Can't help falling in love with you (Weiss, Preretti & Creatore, 1961)||1|
|P4||Two most preferred songs||1. That doggie in the window (Merrill, 1952)||6||Smiling & moving body parts|
|2. Lion sleeps tonight (Peretti, Creatore, Weiss, Stanton & Linda, 1961)||5|
|Two least preferred songs||C. Que se ra se ra (Livingston, 1956)||1||Maintaining a closed body posture by cowering and clocking her ears and face|
|D. Over the rainbow (Arlen, 1939)||1|
|P5||Two most preferred songs||1. Home among the gum trees (Williamson, 2005)||6||Smiling, laughing, & producing exciting sounds|
|2. I do I do I do I do I do (Andersson, Anderson & Ulvaeus, 1975)||6|
|Two least preferred songs||C. We will rock you (May, 1977)||5||Quietly listening without emotional responses|
|D. Octopus's gardens (Starr, 1969)||1|
During the data analysis, the researcher observed video clips of the first and last three sessions repeatedly and analyzed the participants’ behaviors during the song-choice opportunities (see Appendix 2 an example). Participant 1 used an eye-gaze by alternating it between the preferred song-card and the researcher. Participant 2 learnt to pick up only one song-card between two to make a choice. Participant 3 produced long, sustained and strong vocalizations when the researcher sang the chorus of her preferred songs. In similar ways, Participant 4 displayed a clear and open body posture with smiles and giggles and Participant 5 used her voice with clear facial expressions including smiles to make a choice. The choice making behaviors are summarized in the Table 4. It is noticeable that these behaviors are different from their affective responses shown in the song-preference assessment. The differences between preference and choice and also between idiosyncratic and typical choice-making will be further discussed in the discussion section.
|Participant||Affective response||Idiosyncratic choice-making behaviour||Typical choice-making behaviour|
|P1||Smiling, rocking the body rhythmically||Not available||Looking at the preferred song-card for approximately 10 seconds then making eye-contact with the researcher|
|P2||Making eye-contact, rocking the body parts and vocalizing||Not available||Picking up the preferred song-card|
|P3||More smiling, active rocking the upper body back and forth rhythmically, vocalizing||Using long, sustained, and strong vocal sound||Not available|
|P4||Smiling and moving body parts||Displaying open body posture with facial expression (smiles and giggles)||Not available|
|P5||Smiling, laughing and producing exciting sounds||Using happy vocal sound with facial expression (smiles and giggles)||Not available|
In this study, intentional choice was achieved when a participant chose a preferred song, as identified at song-preference assessment sessions, over a less-preferred song. The researcher calculated the number of preferred songs chosen out of the total number of song-choices made to tally how many times each individual intentionally made a song-choice. Individual results are displayed in Table 5.
|Participant 1||Participant 2||Participant 3||Participant 4||Participant 5|
The participants made intentional choices for 73%. The less-preferred songs were chosen for 27% of the time as a group, which is also interesting to contemplate. It is possible that some participants might have changed their preference of songs or became interested in other songs over time after listening to particular songs repeatedly.
During the first few sessions of the song-choice intervention, most participants displayed affective responses to indicate their choice of songs as they had done in the song-preference assessment. The researcher verbally explained that the affective response was not a choice and modeled intentional choice making behaviors with the participant. It was accepted that the participants might not have understood these verbal instructions. However the researcher continued to model and explained the process until the participants used the desired intentional behaviors. Providing verbal congratulations and playing the chosen song positively reinforced the intentional behaviors and the participants started to use these behaviors in clear and effective ways. Behaviors, such as using open body postures or intentional vocalizations, were validated and reinforced as the sessions progressed for participants who had physical limitation, such as dysfunctional use of arms and hands (Participant 4 and 5) and visual impairment (Participant 3 and 5).
Descriptive analysis showed that all participants improved their communication skills by refining their pre-existing behaviors within the music therapy context. Participant 1 refined her eye-gaze, Participant 2 improved her hand movement, Participant 3 and 5 refined their vocalizing ability, and Participant 4 changed the body posture from a closed posture to an open posture and showed her positive facial expression. This information can be also seen in the Table 4.
Alternatively, increased numbers of the successful choices towards the end of intervention period were observed, and this also could be an indicator of communication improvement. The researcher calculated the number of successful choices made in the first and last sessions and compared the two. The individual results are illustrated in Figure 1.
Twenty-five percent of the data from the song-choice interventions was shown to the second observer who was a registered music therapist. The agreement between the researcher and the second observer on the songs chosen based on whether it was preferred or less preferred songs were calculated. The observed percentage agreement was 78%. Cohen’s Kappa coefficient was also calculated and the result is κ = 0.5 (κ = 1 means complete agreement and κ = 0 means no agreement between the two raters).
This study examined whether consistent opportunities for expressing song-choices within music therapy resulted in an improvement in communication abilities of five females with profound and multiple disabilities. The five participants expressed consistent preferences on particular songs and selected these preferred songs average 73% of the time. The communication developments were seen by the improved use of eye-gaze (Participant 1), hand-use (Participant 2), facial expression (Participant 4&5), vocalization (Participant 3&5), and body posture (Participant 4).
The positive findings support the results of the previous studies claiming that adults with profound and multiple disabilities are able to express their emotions and feelings, and there are individual differences in the ways how those are expressed (Green & Reid 1996; Petry & Maes 2006; Smith et al., 2005). The nature of responses and behaviors presented by the participants in this study was similar to the descriptions offered in these previous studies. The researchers in the current study were able to observe the affective responses of the participants to particular songs in the song-preference assessment sessions over three weeks and found that the responses were consistent over the three sessions. It was clear that the participants in this study mainly used facial expressions and vocalizations with or without a change of body posture and movement. Repeated exposure to same stimulus and close observation of the responses using video-analysis techniques were effective for recognizing and interpreting the communication behaviors of these five individuals with profound and multiple disabilities. Accordingly, this finding supports the argument that “indices of happiness among people with profound multiple disabilities can be defined and reliably observed” (Green & Reid, 1996, p. 76).
The results from the song-choice intervention sessions also strengthen the argument of previous studies reporting that people with profound and multiple disabilities are able to make choices, and these can be intentional (Fisher et al, 1992; Nozaki & Mochizuki, 1995; Palawskyj & Vollmer, 1995; Parsons & Reid, 1990). Assessing preferences of items and manipulating the choice options by pairing preferred and less-preferred items seem effective when facilitating choice-making. This is because choosing a preferred item over a less-preferred item is easy, and the desire to get a preferred item can motivate participants to communicate actively and intentionally. With regards to intentionality, most of the literature used different definitions of intentional choices. For example, Lancioni, Olivia, Andreoni, and Pirani (1995) considered that the level of alertness and attention was an indicator for the intentionality of the choice. If the participant presented with increased alertness and attention while choosing an item, this was regarded as a genuine and intentional choice. Conversely, Elefant (2002) considered choices as intentional only when the participant confirmed her choice for a second time. In the current study, intentionality was considered when the participants chose the songs assessed as their preferred songs in the song-preference assessment. Thus, unified definitions of intentional choice are needed for future studies.
The video analysis of behaviors exhibited by participants in this study clarified that expressing preferences and indicating choices utilize different behaviors. Expressing preference was shown by the affective responses, and it is considered subjective, emotional and non-intentional. Alternatively, indicating choice was shown by physical acts, such as alternating eye-gaze and picking up a song-card. It was considered intentional. This clear difference between preference and choice was also reported by Elefant (2002). She divided the behaviors of the participants with Retts syndrome into emotional (smile, laughter, and shout) and communicative behaviors (eye contact, rocking, and leaning forward). Elefant used different terms, emotional behavior and communicative behavior, whereas, in this research, the terms affective response and intentional behavior have been used. These could be used interchangeably as they are pointing to the same concepts.
Furthermore, having a good eye-sight to look at or a hand function to pick up an item seems essential to indicate choices according to the definition in the literature, and also as seen by the Participant 1 and 2 in the current study. Despite this fact, the three participants, 3, 4, and 5, who had impaired eye-sights or hand functions showed different types of intentional behaviors to indicate their choices which were different from their affective responses. As the researcher did not accept the affective and emotional behaviors as choices, they had to display different behaviors. These behaviors were not objectively considered as choice-making behaviors, but the researcher was able to understand these idiosyncratic choice-making behaviors in an intersubjective point of view. The terms idiosyncratic choice-making behavior and typical choice-making behavior are used under the choice in the Table 4 to differentiate idiosyncratic choice-making behaviors and typical choice-making behaviors developed by the participants.
It is important that music therapists are clear about this distinction when observing and describing these two different concepts: preference and choice, idiosyncratic choice-making behavior and typical choice-making behavior. Setting a goal regarding each individual’s potential and limitation and facilitating intentional behaviors regardless whether it is idiosyncratic or typical are important. Improving the idiosyncratic communication behaviors in clear, consistent, and intentional ways, and informing carers to respect these behaviors will be a significant contribution of music therapy in improving the quality of communication between the carers and adults with profound and multiple disabilities.
A number of limitations of the current study are identified. First, there was no baseline period conducted prior to the song-choice intervention. When examining the improvement of communication skills, the researcher compared the outcomes of the first three sessions to the last three sessions. In this way, the initial sessions were functioned in a similar way to a baseline in the current study. However, comparing the data of baseline and intervention would have been another approach that would have increased the validity of the study. Second, examining the reliability of the data analysis seems to have some limitation as this was conducted only on the songs chosen. Examining the two observers’ agreement on the participants’ behaviors in the song-preference assessment and song-choice interventions might have increased the reliability of all aspects of the study. Third, the number of the participants was small so that the findings of the current study are not suitable to be generalized. Only one researcher conducted the sessions and the study was therefore limited to the number of participants that the researcher could meet each day.
It is one of the few studies to investigate the outcomes of individual music therapy on adults with profound and multiple disabilities. Also there are no studies using live music in the preference and choice study in the field of disability. Thus, the findings of this study have implications for both the fields of disability studies and for music therapy. Using music therapy interventions to help individuals with profound and multiple disabilities improve their communication skills with their carers outside of the music therapy sessions will be the most beneficial outcome. It is anticipated that these individuals need intense training time to be familiarized with others in new situations. However, the individuals seem to be motivated to express their interest and enjoyment when offered with preferred songs and music. So using the elements of these in other settings will produce efficient results for the individuals.
There are several recommendations for the future studies such as: replicating the current study with a larger number of participants, examining the effectiveness of song-choice interventions with various populations, including people with a range of disabilities, evaluating the effectiveness of the song-preference assessment used in this study, analyzing musical characteristics of the preferred songs of individuals with profound and multiple disabilities, and analyzing the nature of musical interactions between the researcher and the participant whilst singing. In addition, examining the effect of music therapy intervention including song-choices on the quality of life of individuals with profound and multiple disabilities is recommended. As the individuals with profound and multiple disabilities seem to need a long period of time to be influenced by some interventions, this should be conducted as a longitudinal study to appropriately capture the long-term effects of music therapy.
Expressing preferences and making choices are considered basic human rights. This can be challenging for people with profound and multiple disabilities because they cannot use conventional communication tools, such as speech and sign language. Despite this, providing opportunities to express preferences and make choices is still important for these individuals in acknowledgement of their human rights, and ultimately to improve their quality of life. This study demonstrates that individuals with profound and multiple disabilities are eager for music and songs and are able to appreciate art forms. Musical experiences can empower people to feel that they are alive, and also promote shared experiences with others who do not have disabilities. Music validates and describes the feelings they cannot speak or express in any way. The results of this study support the belief that when provided with opportunities to improve their ability to express consistent preference and clear choice making skills, individuals with profound and multiple disabilities are able to do so. Equally important are the pleasure and happiness they feel when being heard, understood and validated. The role of the music therapist is not only to develop communication skills, but to understand how these contribute to quality of life and foster all aspects of our clients’ humanity.
Registered with the Australian Music Therapy Association.
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