Perceptions of self-determination by special education and rehabilitation practitioners based on viewing a self-directed IEP versus an external-directed IEP meeting

This study investigated perception of self-determination by special education and rehabilitation practitioners following their exposure to a videotaped simulation of a self-directed IEP meeting and an external-directed IEP meeting involving an adolescent with mild mental retardation. Groups of special education practitioners and rehabilitation practitioners did not differ from each other in their perceptions of self-determination before or after viewing either the self-directed or external-directed IEP meeting simulation. However, both groups of respondents had higher perceptions of the self-determination capability of the confederate student when they viewed her in a self-directed meeting. In addition, respondents consistently rated the self-directed meeting simulation as being of higher overall quality than the external-directed meeting. Results are discussed in relation to practitioner recommendations and future research in regard to the development and enabling of self-determination skills involving persons with disabilities.     

Environmental opportunities and supports for exercising self-determination in community-based residential settings

Information was collected on the environmental opportunities for exercising self-determination among 281 adults with mental retardation receiving community-based residential supports. The results indicated that: (1) the majority of participants had little or no opportunity to exercise self-determination over major life decisions (e.g., with whom and where to live, the recruitment and retention of care staff); (2) even in more mundane areas, such as where and when to eat, the majority of participants were not supported to exercise effective control; (3) variation in environmental opportunities to exercise self-determination was strongly related to a range of factors including participant ability, previous residential history, and structural and procedural aspects of the residential supports currently provided.     

Expectations and attitudes of medical students concerning work stress and consequences of their future medical profession

In the following cross-sectional study 245 medical students from two different terms (three years apart) were being questioned about work stress and the consequences of their future medical profession. Attitudes and expectations regarding future work stress, work satisfaction, coping strategies, gender specific problems, effects on private life and future quality of life were studied. As expected, students in the upper term were able to judge their professional and private future more realistically. The expectations of the advanced students are more realistic and as a consequence it is likely that a disillusioning process is taking place. The results contribute to a better understanding of the present study situation and well-being of medical students concerning their professional and private future which is also important for teaching and the teaching professionals.     

"I'm supposed to be in charge": self-advocates' perspectives on their self-determination support needs

In this qualitative interview study, we explored the perceptions of adults with intellectual disability regarding interpersonal or social supports needed to express their own self-determination. Specifically, 10 adults, all members of a self-advocacy group, were asked to discuss their understanding of the term self-determination and ways in which support staff have either supported or inhibited their self-determination. Ten themes characterizing supportive and impeding staff actions were identified. The need for greater exploration of environmental and social influences on self-determination is emphasized.     

Self-determination across living and working environments: a matched-samples study of adults with mental retardation

The environments in which people live, learn, work, and play influence many aspects of their lives, including their self-determination. These environments differ in the degree to which they enable people to receive personally designed and individualized supports. In the present study self-determination, autonomy, life choices, and lifestyle satisfaction for adults with mental retardation matched by level of intelligence, age, and gender but differing in type of residence or working environment were examined. Analyses indicated that respondent self-determination, autonomy, and satisfaction as well as opportunities for choice-making differed according to settings.     

The relationship between quality of life and self-determination: an international study

Background The aim of this study was to evaluate the relationship between self-determination and quality of life (QOL) of persons with intellectual disabilities (ID) living in four countries (Canada, United States, Belgium and France). Method Participants were 182 adults with mild ID living in community settings (with families, living independently or in supported living environments). QOL was measured with the Quality of Life Questionnaire. Self-determination was measured using the Adult version of The Arc's Self-Determination Scale. Discriminant function and correlational analyses were conducted. Results Discriminant function analysis indicated that essential characteristics of self-determination predicted membership in the high QOL group and that overall self-determination and QOL were significantly correlated, as were sub-scale scores. Conclusions The study replicates findings from a previous study with an international sample and confirms the importance of self-determination to enhance QOL. Subsequent research should examine the direction of the relationship between self-determination and QOL and examine the relationship of essential characteristics of self-determined behaviour and core domains of QOL in greater detail.     

Children of mothers at psychosocial risk growing up: a follow up at the age of 16

The aim of the present study was to make a 16-year follow-up of children of psychosocial risk mothers as concerns emotional/behavioural problems, self-esteem, life events, and academic grades. Forty-three teenagers (index group) and 61 reference teenagers were personally interviewed and asked to answer the Youth Self-report (YSR), the Self-image questionnaire I Think I Am, and a Life Event questionnaire. Their final grades from the 9-year compulsory school were studied. The results showed that boys, especially the sons from families with alcohol/drug problems, displayed poorer mental health, a more negative self-image, had experienced more negative life events, and had to a greater extent not successfully completed the 9-year compulsory school. More teenagers in the index group had been placed in foster care, had a less positive outlook about their future, were more often smokers, and more of them (girls) had seriously considered committing suicide than the teenagers in the reference group. It was concluded that boys of psychosocial risk mothers are less well off than teenagers of non-risk mothers at the age of 16 as concerns psychosocial well being. It is of great importance to devote attention to these children at an early stage of life in order to be able to provide them with the support that may prevent development of future problems.     

Effectiveness of the BOOST-A™ online transition planning program for adolescents on the autism spectrum: a quasi-randomized controlled trial

Background

The majority of existing transition planning programs are focused on people with a disability in general and may not meet the specific need of adolescents on the autism spectrum. In addition, these interventions focus on specific skills (e.g. job readiness or self-determination) rather than the overall transition planning process and there are methodological limitations to many of the studies determining their effectiveness. The Better OutcOmes & Successful Transitions for Autism (BOOST-A?) is an online program that supports adolescents on the autism spectrum to prepare for leaving school. This study aimed to determine the effectiveness of the BOOST-A? in enhancing self-determination.

Methods

A quasi-randomized controlled trial was conducted with adolescents on the autism spectrum enrolled in years 8 to 11 in Australian schools (N = 94). Participants had to have basic computer skills and the ability to write at a year 5 reading level. Participants were allocated to a control (n = 45) or intervention (n = 49) group and participants were blinded to the trial hypothesis. The intervention group used the BOOST-A? for 12 months, while the control group participated in regular practice. Outcomes included self-determination, career planning and exploration, quality of life, environmental support and domain specific self-determination. Data were collected from parents and adolescents.

Results

There were no significant differences in overall self-determination between groups. Results indicated significant differences in favor of the intervention group in three areas: opportunity for self-determination at home as reported by parents; career exploration as reported by parents and adolescents; and transition-specific self-determination as reported by parents.

Conclusions

Results provide preliminary evidence that the BOOST-A? can enhance some career-readiness outcomes. Lack of significant outcomes related to self-determination at school and career planning may be due to the lack of face-to-face training and parents being the primary contacts in the study. Further research is needed to determine effectiveness of the BOOST-A? related to post-secondary education and employment. Trial registration #ACTRN12615000119594

     

"My son is still walking": stages of receptivity to discussions of advance care planning among parents of sons with Duchenne muscular dystrophy

Duchenne muscular dystrophy is an inherited progressive neuromuscular disease that generally results in death by early adulthood. Because of its life-threatening nature, discussions of advance care planning are extremely relevant to families with affected children and adolescents. Seventeen parents of sons with Duchenne muscular dystrophy were interviewed about their attitudes, experiences, and the nature of their discussions about these topics. Parents showed a lack of familiarity with and experience communicating about advance care planning. They also discussed opportunities for communication that centered on transitional life events. Parents appeared to vacillate between hope for future treatments, avoidance of emotionally difficult aspects of the disease, and presence with the fullness of life's experiences. These data suggest a model for future research in which windows of opportunity for discussion may exist as sons are approaching significant transitional milestones and parents are able to see the world through a lens of "presence."     

Understanding the personal and clinical utility of psychiatric advance directives: a qualitative perspective

Psychiatric advance directives (PADs) are legal tools that allow competent individuals to declare preferences for future mental health treatment when they may not be capable of doing so as a result of a psychiatric crisis. PADs allow individuals to maintain self-determination during times when they are most vulnerable to loss of autonomy and in need of assistance to make their preferences known and honored. This article describes the content of twenty-eight open-ended, semi-structured qualitative interviews of adults with PADs who have experienced psychiatric crises. The qualitative analysis revealed three major themes from the interviews: (1) PADs as tools for empowerment and self-determination, (2) limited knowledge of PADs among service providers; and (3) difficulties communicating PADs to inpatient staff. In general, many participants expressed enthusiasm of the implementation of PADs but concern regarding clinicians' general lack of awareness about them. Additionally, some consumers discussed discomfort in even mentioning that they had a PAD to clinicians for fear of a negative response from them, or some type of involuntary treatment during their hospitalization. However, participants consistently viewed PADs as a positive tool to promote autonomy with the potential to facilitate stronger patient-provider relationships. Therefore, when working with individuals in psychiatric crisis who have a PAD, and who have never before experienced a sense of control over their own treatment, clinicians must recognize the potential troubling disequilibrium this sense of control may engender. In sum, though the most significant challenges facing the implementation of PADs involve clinicians' familiarity with and education about PADs, much promise for the future growth of PADs lies in the benefits perceived by the patients.     

The experience of adjusting to a diagnosis of non-epileptic attack disorder (NEAD) and the subsequent process of psychological therapy

PurposeResearch suggests psychological therapy as the treatment of choice for individuals diagnosed with NEAD. This study explored the experience of adjusting to a diagnosis of NEAD and engagement with therapy through a qualitative methodology.MethodSemi-structured interviews were conducted with 6 people with a diagnosis of NEAD and analysed using thematic analysis.ResultsSix master-themes were generated, with four discussed. Two themes were not discussed due to previous coverage in the literature and their less direct relevance to the service context. Theme 1: ‘understanding NEAD’ incorporated participants’ evolving understanding of the diagnosis and their reflections on this. Theme 2: ‘I can’t deal with you’ centres on participants’ accounts of relationships with professionals in the context of NEAD. Theme 3: ‘experiences of psychological therapy’ reflected participants’ experience of being referred to psychology and gaining a deeper understanding of themselves through therapy. Theme 4: ‘adjusting to life with NEAD’ explores participants’ views on living with NEAD and their expectations for the future.ConclusionThis study extended previous research by highlighting the impact of how the diagnosis is received and understood on engagement in therapy. Improving awareness of NEAD amongst healthcare professionals is of key importance in reducing stigma and encouraging engagement in therapy.     

The relationship between maternal attitudes and young people's attitudes toward children's rights

Relations between maternal socio-political attitudes and parenting style and young people's and mothers' attitudes toward young people's nurturance and self-determination rights were examined. Both young people (n = 121) and mothers (n = 67) were more supportive of nurturance than self-determination rights, although young people were more supportive than their mothers of self-determination rights and mothers were more supportive than young people of nurturance rights. Maternal conservatism was unrelated to young people's support for rights and negatively related to mothers' support for both types of rights. Last, young people who perceived their mother to be either authoritarian or uninvolved showed stronger endorsement of self-determination rights than young people who perceived their mother to be authoritative. The implications of these findings for the development of young people's attitudes toward rights within the context of various family factors are discussed. In particular, it is suggested that a balance needs to be achieved between assertion of rights and a respect for the rights of others.     

Perceived importance of prospective memory failures in adults with traumatic brain injury

Prospective memory (PM) is the ability to carry out an intended action in the future. Failures in PM are often observed as more frequent in individuals with traumatic brain injury (TBI) than controls. However, it remains unknown how individuals with TBI and their significant others perceive the importance of these PM problems. In the current study, four groups (38 TBI, 34 TBI-other, 34 controls, 31 control-other) were recruited to report on the perceived importance of PM failures using Part B of the Comprehensive Assessments of Prospective Memory (CAPM). Individuals with TBI perceived PM failures as being more important than did their significant others. Controls' ratings did not differ from their significant others. There were no statistically significant differences in rated importance for PM problems involving the basic activities of daily living (BADL) component and those involving the instrumental activities of daily living (IADL) component. Implications of the results are discussed in terms of the motivation of people with TBI.     

Beyond medical diagnosis: Factors contributing to life satisfaction of women with epilepsy in Israel

This study was an exploratory study aimed to examine the contribution of both objective variables (such as education, occupational status, and leisure activity) and subjective variables (such as perceived disability, body image, and feminine self-image) to the life satisfaction of women with epilepsy in Israel. The study also sought to compare the findings with earlier studies of women with epilepsy or other disabilities in order to identify similar patterns in their life satisfaction. The study included 70 women, who had applied in the past to the Israel Epilepsy Association to obtain information and leisure activities. They were asked about their degree of life satisfaction in the context of their personal data including occupational status, leisure activity, perceived disability, body image, and feminine self-image. Findings indicated that higher education and perception of body image and femininity were positively correlated with higher life satisfaction. The regression model showed that perceived severity of disability and body image had the highest contribution to satisfaction with life, a fact that attests to the paramount importance of women's perception of their health disability in dealing with the disorder. These findings are discussed in relation to earlier comparative studies of those with/without epilepsy. The implications for practice suggest aspects that ought to be included in therapeutic interventions such as including contents related to feminine self-image and body image in the rehabilitation process as well as recommendations for future studies.     

Brief report: British adolescents' views about the rights of asylum-seeking children

The present study examined 60 (30 early-to-middle adolescents and 30 late adolescents) British adolescents' understanding of the rights of asylum-seeker children. Participants completed semi-structured interviews designed to assess judgments and evaluations of hypothetical asylum-seeker children's nurturance and self-determination rights in conflict with the practices of authority. Findings indicated that participants were more likely to endorse asylum-seeker children's nurturance rights over their self-determination rights. Reasoning about both types of rights was multifaceted and focused on moral, social-conventional and psychological considerations. In addition, significant differences were found between males and females with regard to both endorsement and reasoning. The limitations of the study are discussed and future research is considered.     

The doctrine of free and informed consent: its ethical and legal foundations and its applications in research and practice of psychiatry

This article briefly examines the ethical and legal foundations for the doctrine of informed consent in medical research and practice. The doctrine is based upon the importance of respecting the individual's autonomy and his right to self-determination. The article also reviews the development of the doctrine of informed consent based on its recent application. The authors cite the Nuremburg Code and the Helsinki Declarations and particularly the media denunication of several scandals in the United States during the late 1960s, when Henri Beecher's name figured prominently. The effects of informed consent in psychiatry are examined specifically, as well as the consequences for psychiatric research, on subjects who are able to give their consent, as well as those who are unable to do so. As for its effects on clinical practice, the paper discusses the right of the hospitalized patient to refuse treatment, and informed consent and the risks for patients treated with neuroleptics of developing tardive dyskinesia. The authors conclude that in psychotherapy the concept of informed consent cannot be taken for granted.     

Consumer-based quality of life assessment: the Maryland ask me! Project

The concept of quality of life currently impacts program development, service delivery, management strategies, and outcome evaluation in the area of intellectual disabilities. Maryland uses peer interviewers to assess consumer-perceived quality of life among adult recipients of MR/DD services and supports. In this article we describe the survey instrument and procedures and discuss assessment issues of quality of responses, acquiescence, and proxy respondents. We present the psychometric properties for eight core quality of life domains among 923 people assessed in FY 2001. Results are summarized and development of a model for enhancing social inclusion, personal development, and self-determination was described. Service and personal characteristics relating to quality of life as well as some ways the results can be used for program enhancement are discussed.     

From adherence to self-determination: evolution of a treatment paradigm for people with serious mental illnesses

Treatment adherence and nonadherence is the current paradigm for understanding why people with serious mental illnesses have low rates of participation in many evidence-based practices. The authors propose the concept of self-determination as an evolution in this explanatory paradigm. A review of the research literature led them to the conclusion that notions of adherence are significantly limited, promoting a value-based perspective suggesting people who do not opt for prescribed treatments are somehow flawed or otherwise symptomatic. Consistent with a trend in public health and health psychology, ideas of decisions and behavior related to health and wellness are promoted. Self-determination frames these decisions as choices and is described herein via the evolution of ideas from resistance and compliance to collaboration and engagement. Developments in recovery and hope-based mental health systems have shepherded interest in self-determination. Two ways to promote self-determination are proffered: aiding the rational actor through approaches such as shared decision making and addressing environmental forces that are barriers to choice. Although significant progress has been made toward self-determination, important hurdles remain.     

The relationship between self-determination and academic achievement for adolescents with intellectual disabilities

Previous research has demonstrated that for students with intellectual disabilities, improved self-determination skills are positively correlated with productivity and organization during school and quality of life outcomes in adulthood. Despite extensive investigation in these areas, the predictive relationship between self-determination and academic achievement for students with intellectual disabilities has not been fully established. This study utilized the sample from the National Longitudinal Transition Study-2 of 480 adolescents with intellectual disabilities in the United States in an attempt to provide a possible empirical explanation of the relationship between academic achievement and self-determination, taking into account the covariates of gender, family income and urbanicity. The structural equation model was found to closely fit the data: all path coefficients were statistically significant. The results of this study identify a strong correlation between self-determination and academic achievement for adolescents with intellectual disabilities, indicating a linear relationship of these skills and supporting an increased focus on the teaching of self-determination skills.