Helping persons with Usher syndrome type II adapt to deafblindness: An intervention program centered on managing personal goals

Abstract

Difficulties adapting to changes in Usher syndrome type II leading to deafblindness are well known. One of the factors that may affect the adaptation process is the ability to redirect one’s life and set new goals for oneself. This article presents the results of a group intervention program centered on managing personal goals. The results of a double-multivariate repeated-measures multivariate analysis of variance (MANOVA) point to a significant partial effect on the variable “meaning of life,” while no significant change was found for the feeling of “serenity,” “self-determination,” and the “ability to set, plan, and pursue a goal.” The results of this pilot project warrant continuing the research since the intervention seems to have a positive impact on psychological well-being.

Keywords

Deafblindness goal process group intervention Usher syndrome type II well-being

Introduction

Usher syndrome type II is characterized by moderate to severe sensorineural deafness at birth associated with retinitis pigmentosa, the symptoms of which usually appear in late adolescence. To communicate verbally most people with this syndrome use hearing aids, lip reading, or cochlear implants (Cohen, Bitner-Glindziez, & Luxon, 2007). It is a complex situation to adapt to. The vision impairment that develops in people with partial or complete hearing loss since infancy is degenerative and unpredictable. At different stages of life, it may progress slowly or quickly, be stable, or degenerate until the person is completely blind. A chronic and often progressive impairment such as deafblindness inevitably leads to overwhelming and ongoing life adjustments (Gullacksen, 1998, 2002, in Göransson, 2008).

Some qualitative studies have described the process of adjusting to the disabilities associated with this syndrome as a process consisting of a series of stages and multiple intrapsychic negotiations, enabling people to gradually learn to live with the changes in how they function and their identity (Aujoulat, 2007; Hayeems, Geller, Finkelstein, & Faden, 2005; Miner, 2008). People with Usher syndrome often have difficulty adapting. They reportedly adopt avoidance behaviors during the intermediate stages in the progression of the disease (Fourie, 2007). The psychological impact of sight loss in adulthood is significant, and sufferers are likely to experience psychological distress (Bodsworth, Clare, Simblett, & Deafblind UK, 2011; Hahm et al., 2008; Miner, 2008).

Coping with these types of disabilities on a daily basis requires a major effort to use the person’s remaining abilities (other senses, memory, deductive capabilities, decision-making abilities, environmental awareness, and overall mental effort) as well as great self-confidence and determination in order to recover the ability to interact with others in an adapted environment. The person has to overcome obstacles to social participation by using different communication, mobility, and orientation strategies and technical aids to access information (Göransson, 2008).

One of the factors that can affect the adjustment process is the ability of those with disabilities to redirect their life or set new goals that take into account their new abilities and opportunities available in the environment (Grimby, 2002). In our clinical experience, this is the case with individuals with deafblindness. People who pursue significant goals engage more readily in new learning (such as learning Braille, walking with a white cane). If they do not have specific plans that give their life meaning, they tend to have difficulty generalizing their learning or maintaining their motivation when they encounter obstacles they must overcome to adapt to their situation, and thus feel less efficacious and able to act. Although the pursuit of a personal goal is recognized as being central to psychological well-being (Dubé, Lapierre, Bouffard, & Alain, 2007), little research in this field has been done to date in rehabilitation. Some authors believe that the results of studies on personal goals support the development of innovative interventions in rehabilitation programs targeting a personal goal (Boerner & Cimarolli, 2005). The correspondence between rehabilitation goals and personal goals could sustain motivation since the intervention will have a significant impact on the person’s life (Sivaraman Nair, 2003). In a study done with adults with visual impairment, goals were significantly correlated with psychological well-being, and relationship goals were more strongly correlated with well-being than goals involving functional capacities (Boerner & Cimarolli, 2005). According to the theory of “self-determination” (Laguardia & Ryan, 2000; Ryan & Deci, 2000), to further an individual’s personal progress and optimal functioning, the goals must be linked to the satisfaction of fundamental psychological needs and thus contribute to maintaining the individual’s ability to be in relationships, feel competent, and be able to act autonomously. A key factor known to help in the adjustment process and empowerment is forming a group of different people in a similar situation. This allows feedback to be given and received about one’s experiences with others and their impact on immediate other members of the group, the multiplicity of perspectives of oneself, the availability of both peer and professional relationships for exploration, and members identification with each other’s experience. A collective environment mobilizes the individual’s own strength to deal with the situation, and a certain amount of motivation can be directed toward the future and new life goals (Gullacksen, 2002, in Göransson, 2008). Sharing with peers makes people feel more secure and supports the “self-determination” process (Göransson, 2008) of people with deafblindness.

This is the context in which a group intervention program centered on the pursuit of personal goals was developed at the Institut de réadaptation en déficience physique de Québec (IRDPQ) for persons with deafblindness. The group approach entitled “Let’s choose our projects” (Dubé & Côté, 2005) is an adaptation of the “Life transitions through personal goals” (Dubé et al., 2007) program initially developed for retirees. This program rests on solid theoretical and empirical foundations and has been tested with various populations (Bouffard, Bastien, Lapierre, & Dubé, 2001; Dubé et al., 2007; Dubé, Lapierre, Bouffard, & Labelle, 2000). It was adapted to the situation of people with Usher syndrome type II and tested with a group of four (Côté & Dubé, 2005). The initial pilot project showed the feasibility of applying the approach with this population. The qualitative data collected during the process suggested positive effects. The participants were able to set, plan, and pursue a goal, and they reported an improvement in their well-being. In this study, a more formal, rigorous research project was designed with the goal of determining the effects of this group intervention on the well-being of persons with Usher syndrome type II. More specifically, the objectives of this study were to assess the impact of the “Let’s choose our projects” group intervention on (1) psychological well-being, (2) self-determination, and (3) the ability to set, plan, and pursue a goal using the strategies learned. The participants were expected to show an improvement between admission to the program and the end of the intervention (Table 1).

Table 1.

Stages of the “Life Transitions Through Personal Goals” program.

Preliminary stages (2 meetings)

(1) Introduction of participants and presentation of information on the program to encourage active participation in the workshops.

(2) Open discussion on crisis situations or life transitions (moving on from the experience and facing the future).

Goal evaluation (4 meetings)

(3) Identification of counterproductive thoughts. Identification of negative beliefs that prevent the achievement of goals.

(4) Inventory of one’s own desires, ambitions, objectives, projects, and personal goals to identify significant goals. Dimensions and hierarchy.

(5) Selection and evaluation of high-priority goals based on certain characteristics (achievement probability, effort, stress, or pleasure associated with the goal, etc.) in order to draw out all the implications of the selected goals.

(6) Choice of a goal and translation of this goal into concrete, clear, and specific actions in order to facilitate its achievement.

Goal planning (2 meetings)

(7 and 8) Choice of means: specification of achievement stages, prediction of obstacles and strategies for overcoming them, and identification of personal and environmental resources, including possible help from others.

Goal pursuit (4 meetings)

(9, 10, 11, and 12) Path toward the goal involves the use of effective means and concrete actions, perseverance, confrontation of difficulties, and constant adjustments to the unexpected.

Evaluation (1 meeting)

(13) Evaluation of progress in achieving the goal and satisfaction, awareness of the knowledge acquired.

Source. Translated from Dubé, Bouffard, and Lapierre (2004).

Method

Participants’ characteristics

The study participants were recruited from individuals eligible for services from the IRDPQ Deafblindness program. They had to present Usher syndrome type II, live in the Quebec City metropolitan area, be between 40 and 65 years of age, and be able to communicate verbally in a group situation. Those who were receiving other rehabilitation and experiencing high level of psychological distress were excluded from the study, to ensure that the results were mainly related to the group intervention and that the participants were likely to benefit from it. The instrument used during the recruitment process to assess distress was derived from Ilfeld’s Psychological Symptom Index (1978) adapted by the Quebec Health Survey. This scale presents internal consistency (Cronbach’s α = .89) and satisfactory construct validity (Préville, Boyer, Potvin, Perreault, & Légaré, 1992). Scores above 26 are deemed to indicate a high level of psychological distress.

Recruitment

Eligible participants were identified from individuals with an active file in the deafblind program. Of the 14 individuals approached, 8 agreed to participate. The principal investigator met with those who agreed, checked if they met the inclusion criteria, and gave them additional information. For organizational reasons, the pilot project was spread over 2 years. Four participants were recruited in the first year, and four more participants were selected in the second year; however, one person dropped out after the pretest, leaving a total of three participants in intervention group 2. The study was approved by the IRDPQ Research Ethics Board.

Study procedure

Meetings were held with all the participants 1–2 months prior to the start of the intervention to administer the measures (T1: admission to the program). They completed the questionnaires again 1 week prior to the start of the intervention (T2: pretest). Then the psychologist responsible for the project delivered the program (Dubé, Bouffard, & Lapierre, 2004), consisting of one meeting a week for 12 weeks. At the first meeting, the psychologist checked that the material was adapted to the participants’ disabilities. During the program, she read all the written information to help communicate the content. At the beginning of each meeting, the participants were encouraged to use communication aids (amplification system) and communication strategies in the group. Some of the participants received individual assistance to complete certain steps in the process. The meetings were videotaped. The program comprised three main steps: goal setting (identification and evaluation of personal desires and objectives, negative thoughts, and choosing a priority goal), goal planning (choosing methods and strategies to overcome obstacles), and goal pursuit (concrete actions and adjustments).

The posttest measurement (T3) took place 2 weeks after the end of the program. At each measurement time, the same questionnaires were filled out during individual interviews with a research professional. The aim of this procedure was to reduce social desirability bias and achieve as much objectivity as possible.

Measurement instruments

Psychological well-being was assessed with two instruments: (1) the six statements in the Meaning of Life subscale of Ryff’s Psychological Well-Being Scales (1989; translated into French by Bouffard & Lapierre, 1997), which indicate whether the person has goals and is future oriented; the six statements are rated on a 6-point Likert scale from “completely wrong” to “completely right,” and the subscale has a Cronbach’s α of .88, and (2) the short version of the Serenity Scale (Roberts & Aspy, 1993), which includes 11 statements on a 6-point Likert scale from “never” to “always,” its internal consistency is satisfactory (Cronbach’s α = .80). These two measures were selected because they were shown to be very sensitive when used to measure the evolution of young retirees (Dubé, Bouffard, Lapierre, & Alain, 2005).

Self-determination was assessed with the Psychological Self-Determination Questionnaire (Dubé, Lamy, Lalande, Lapierre, & Alain, 1990; Lamy, Dubé, Lapierre, Alain, & Lalande, 1994). It consists of 28 statements that measure how motivated the person is to make personal decisions and direct his or her own actions. The statements are grouped under three main factors: personal dynamic, personal capacities, and social integration. The total scale has a Cronbach’s α of .89, and the subscales have coefficients varying from .61 to .82 (Dubé et al., 1990).

The ability to set, plan, and pursue a goal was measured with the Goal Realization Process questionnaire (Bouffard, Lapierre, & Dubé, 2004). It comprises 30 statements designed to evaluate the effect of the program on the propensity to set personal goals and plan and pursue them. The participants responded on a 7-point Likert scale from “completely disagree” to “completely agree.” This questionnaire had high internal consistency (Cronbach’s α = .91) in the study with young retirees (Dubé et al., 2005).

Statistical analyses

Data were analyzed with SPSS 19. Because four dependent variables (“meaning of life,” “serenity,” “self-determination,” and “goals process”) were measured three times (admission to the program, pretest, and posttest), a double-multivariate, repeated-measure multivariate analysis of variance (MANOVA) was used. Prior to that, the normality of the distribution and homogeneity of the variance were verified. Since an ordinal scale was used, the η² was interpreted with caution. Because the number of participants was small (N = 7), special attention was paid to the observed power.

Results

As shown in Table 2, the program was given to two groups of adults with Usher syndrome type II. They all had severe visual impairment related to retinitis pigmentosa and moderate to profound sensorineural deafness. Group 1 consisted of four men with an average age of 51 years: 2 lived alone and 2 were married (1 common-law); two were employed, one was looking for a job, and one had taken early retirement at the time of the study; three could read large print; and three did not use a white cane. In group 2, one participant dropped out, leaving three women with an average age of 53 years: all were married and two were not employed and one had been employed for 10 years; they all used a white cane and adapted transport and could read large print.

Table 2.

Participants’ demographic and functional characteristics.

	Sex	Age (years)	Marital status	Education	Occupation	Hearing loss	Esterman visual field	Reading	Listening	Mobility
Group 1	M	52	Common-law	Technical school	Work	Moderate	6%	Large print	Hearing aids
	M	42	Single	High school	Unemployed	Moderate	11%	Large print
	M	50	Widowed	University	Work	Profound	6%	Speech synthesis	Hearing aids	White cane
	M	63	Married	University	Retired	Severe	9%	Large print	Hearing aids
Group 2	F	55	Married	High school	Unemployed	Severe	3%	Large print	Hearing aids and LSQ	White cane
	F	59	Married	Technical school	Work	Severe	6%	Large print	Hearing aids	White cane
	F	45	Married	High school	Volunteer	Moderate to profound	8%	Large print	Hearing aids occasionally	White cane

Note. LSQ: Quebec Sign Language.

It was decided to examine the results of this pilot study by comparing the groups rather than individual data although the number of participants was small.

Figure 1 shows the average scores of the participants at the three measurement times for the four dependent variables:

Meaning of life: averages were 3.7 (T1), 3.8 (T2), and 4.4 (T3);

Serenity: averages were 3 (T1), 3.3 (T 2), and 3.2 (T3);

Self-determination: averages were 3.7 (T1), 3.9 (T2), and 4 (T3);

Goals process: averages were 3.5 (T1), 3.7 (T2), and 4 (T3).

Figure 1.

Average scores of the participants at the three measurement times for the four dependent variables: (a) “meaning of life,” (b) “serenity,” (c) “goals process,” and (d) “self-determination.”

The MANOVA indicates that residuals are almost normally distributed with a slightly higher kurtosis (.129) and small asymmetry (−.318). However, these parameters are not statistically different from zero. The Huynh–Feldt adjustment corrected two heterogenous variances (“goals process” and “self-determination”).

At the multivariate level, it should be noted that this result was derived from a sample of seven participants, and therefore, the observed power (.51) must be interpreted cautiously; the results suggest a time effect, although the p value did not reach the usual alpha criterion (Wilks’s λ = 2.2; p = .078). Since no difference was expected between admission to the program and pretest, this p value close to .05 nevertheless warranted further univariate analysis. At this level, only the “meaning of life” showed a significant time effect (p = .006). A contrast analysis revealed that the time effect was exclusively due to a difference between pretest and posttest (p = .056; partial η² = .48).

Differences between individual scores at T1 and T2

To clarify the significance of these results, a detailed analysis of individual scores on the various scales was conducted; it revealed that two participants (S4 and S6) exhibited deterioration in their results at the various measurement times unlike the other five participants who, as a whole, demonstrated results that changed as expected. It should be noted that they were not in psychological distress when they joined the group, and between T1 and T2, they presented declines on the scales for “serenity” (−.40 and −.50), “self-determination” (−.15 and −.90), and “goals process” (.00 and −.87), unlike the other participants. Despite that, we should note that the “meaning of life” was preserved in one (S4 = .17) and declined in the other (S6 = −.30).

Discussion

This study aimed to assess the impact of an intervention program centered on managing personal goals with adults with Usher syndrome type II by comparing their results on the “meaning of life,” “serenity,” “self-determination,” and “goals process” at admission to the program, and pre- and postintervention. An improvement on these variables between the beginning and end of the program was expected.

The results indicate that the intervention had a partial significant effect on the “meaning of life,” which improved, while the feeling of “serenity,” “self-determination,” and ability to set, plan, and pursue a goal did not show any significant change.

Previous studies confirmed that pursuing a goal is beneficial for mental health (Lapierre et al., 2001) and has a positive impact on psychological well-being (Boerner & Cimarolli, 2005). Thus, an improvement in “meaning of life” for the participants could be related to making progress toward a goal, as found in a previous study done by Dubé et al. (2007) with the same intervention program. The lack of improvement in “serenity” could be attributable to the individual responses on that scale. All of the participants were still concerned about the future (Q3), their inner peace depends on events (Q2), and they feel stress (Q10) when they cannot get what they want. According to the clinical observations, they are concerned by the gradual loss of vision leading to blindness. They are subject to unpredictable changes that interfere in their daily activities (noise, lighting, obstacles in the environment) and decisional process. Consequently, the problem of adapting to sensory disabilities probably has a substantial impact on their psychological well-being and self-determination, despite the pursuit of significant goals.

According to previous studies, people who view their goals as stressful or hard to achieve often present a low level of well-being (Salmela-Aro & Nurmi, 1996). Consequently, pursuing new goals is likely to increase the degree of difficulty and stress encountered when doing activities and to lessen the feeling of “serenity,” despite satisfaction with achieving goals that give life meaning.

Among the men, two had relationship goals and the other two were pursuing work-related goals. One decided to retire during the process. Among the women, one was pursuing a leisure-related goal, another was learning to use the computer, while the last one had decided to retire, and her goal was to prepare for retirement. According to a study by Boerner and Cimarolli (2005) with adults presenting vision loss, relationship goals are significantly more correlated with well-being. In this study, however, only two participants focused on relationship goals.

The two participants whose goal was to retire had lower scores on all the scales. Thinking about their personal goals with the support of peers could have made them more aware of their situation and helped trigger that decision. This is a crisis situation, not a transition. Therefore, they had to absorb this change psychologically before reinvesting in their personal goals and engaging in their adaptation process. Being forced to retire, as was the case here, increases distress and causes a decline in psychological well-being, life satisfaction, and adaptation (David, Deniger, Gaulier, Guerin, & Limoges, 1997). Although these results suggest that this approach did not seem to produce an improvement in crisis situations, it might still have a positive effect over the long term. In the case of early retirement, in the study population, it would be appropriate to make it clear to the participants what approaches to consider in that case. A personalized psychological intervention could be a prerequisite to avoid a loss of autonomy and withdrawal. At the beginning of the group intervention, it would be useful to assess participants’ personal situations to identify those at risk of an imminent crisis during this process.

The clinical observations made during the group process and the participants’ self-assessments suggest positive changes in managing their situation. They were able to identify a goal and make sufficient progress to consider learning to use a white cane or decide to wear a hearing aid. However, the average scores obtained on the different scales were lower than the average scores obtained by the groups of young retirees (Dubé et al., 2005; Dubé et al., 2007; Dubé et al., 2000). Thus, it is probable that the gradual decline in vision had an impact on well-being, self-determination, and the goal realization process and that a longer and more sustained rehabilitation program is needed to produce a significant improvement.

Study limitations

Because there was no control group, caution is called for when interpreting the results, which could have been affected by external factors that were not controlled. The small number of participants and sampling variability reduce the likelihood of obtaining significant results on the different measurement scales. For example, we could not examine factors underlying psychological self-determination and the goal realization process. It may not be possible to replicate the results.

A study with a larger number of participants and a control group would make it possible to interpret the effects of this intervention with greater certainty. However, it is very difficult to obtain a larger sample because of the small number of people suffering from this syndrome. With this low-incidence group, a single case (N = 1) design is recommended in order to obtain quantitative and qualitative data that clarify the effects of the group intervention.

Conclusion

Few studies measure the specific effects of group interventions on the process of adapting to changes in deafblindness (Göransson, 2008). Moreover, participation in a low vision support or therapy group has been shown to contribute to renewed self-esteem and successful adjustment for individuals with visual impairment (Emerson, 1981; McCulloh, Crawford, & Resnick, 1994). Despite some limitations, our study is useful because it focused on a better understanding of the impact of managing personal goals in persons with deafblindness, and especially their adaptation process. This is an important issue in clinical practice with Usher syndrome.

Footnotes

Declaration of conflicting interests

The authors declare that there is no conflict of interest.

Funding

This research was made possible by a grant from the IRDPQ Fondation Élan, and financial support from the Fonds de recherche en déficience auditive and the Center for Interdisciplinary Research in Rehabilitation and Social Integration.

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