Kerstin Möller

The ICF Core Sets for hearing loss: researcher perspective, Part II : Linking outcome measures to the International Classification of Functioning, Disability and Health (ICF)

Abstract Objective: To link outcome measures used in audiological research to the ICF classification and thereby describe audiological research from the ICF perspective. Design: Through a peer-reviewed or a joint linking procedure, link outcome measures to the ICF classification system using standardized ICF linking rules. Additional linking rules were developed in combination with the established rules to overcome difficulties when connecting audiological data to ICF. Absolute and relative frequencies of ICF categories were reported. Study sample: The identified outcome measures from the previous study (Part I) constituted the empirical material. Results: In total, 285 ICF categories were identified. The most prevalent categories were related to listening, hearing functions, auditory perceptions, emotions and the physical environment, such as noise and hearing aids. Categories related to communication showed lower relative frequencies, as did categories related to the social and attitudinal environment. Conclusions: Based on the linked outcome measures, communication as a research topic is subordinated to other research topics. The same conclusion can be drawn for research targeting the social and attitudinal environment of adults with HL. Difficulties in the linking procedure were highlighted and discussed, and suggestions for future revisions of the ICF from the audiological perspective were described.

Social recognition, participation, and the dynamic between the environment and personal factors of students with deafblindness

The study describes environmental and personal factors that, from the student perspective, impede participation in education in secondary upper schools by students with postlingual deafblindness. The discussion is framed by the International Classification of Functioning, Disability, and Health. The researchers use the theory of social recognition as a theoretical tool in understanding the dynamics between personal factors and environment in the context of secondary upper-school education. Thirty-four students with deafblindness responded to a questionnaire; the surveys findings indicate experiences of barriers in the natural and social environments that restrict participation. Experience of considerateness—such as concern for the special requirements of students with deafblindness—and experience of the lack of considerateness are the most important factors. Negative roles adapted by some students for themselves may be interpreted as resulting from a lack of recognition, in the form of denigration or insults.

Deafblindness, ontological security, and social recognition.

Trust, ontological security, and social recognition are discussed in relation to self-identity among people with acquired deafblindness. To date the phenomenon has not been elaborated in the context of deafblindness. When a person with deafblindness interacts with the social and material environment, the reliability, constancy, and predictability of his or her relations is crucial for maintaining or achieving ontological security or a general and fairly persistent feeling of well-being. When these relations fundamentally change, the impact on ontological security will be very negative. The construction of social recognition through the interaction between the self and others is embodied across three dimensions: at the individual level, at the legal systems level, and at the normative or value level. The relationship between trust and ontological security on the one hand and social recognition on the other hand is discussed. It is argued that these basic processes affecting personality development have to be identified and acknowledged in the interactions people with deafblindness experience. Some implications for the rehabilitation of people with acquired deafblindness are presented and illustrated.

Everyday impact of having a rare diagnosis : a questionnaire study

Aim: To study the physical, psychosocial, emotional and financial impact of having a rare diagnosis. Background: A whole spectrum of problems were known in the member groups of Rare diseases Sweden such as lack of care and treatment, negative encounters and long waiting time to get the diagnosis. Methods: A specific questionnaire was mailed to members of the association (n=2983). Findings: The results are presented under the categories ‘contacts with health care and society,’ ‘consequences of getting the wrong diagnosis, ‘family experiences in daily life’, ‘extra expenses related to the rare diagnosis and ‘positive effects of having a rare diagnosis.’ The result shows that these groups are risking to be treated arbitrarily when needing service from the society. When comparing reimbursement and need of time for personal care, some respondents reported high need of personal time but low reimbursement as well as the opposite. Conclusion: In summary, having a rare diagnosis is very apparent for the individual in all situations in life. The individuals ability to achieve his/her social rights is often more conclusive than the disability itself.

Research Initiation Based on Idea-Circles: From Research Object to Co-Actor.

This article details an evaluation of a research project based on participatory research methods organized by the Swedish Disability Federation from 2008 to 2011. In Sweden there has been a lack of productive dialogue with the traditional academic world and the question was raised whether proposals for future research would be different if disabled people formulated them. Nine idea-circles with disabled participants and invited researchers from fields of interest close to the participants produced ideas, developed out of the life experience of being a disabled person. These ideas were developed into 72 research drafts that often reflected key advocacy areas, rather than operationalized research issues. The adjustment from the familiar discourse of political struggle to discussion of research was a complicated process for many. When asked to prioritize among areas for research, the representatives from the disability movement chose areas that are not stressed in mainstream disability research in Sweden.

Aspects of learning from the perspective of people with Alström syndrome

Abstract Purpose: The aim of the study was to explore aspects of learning, from a lifelong perspective, in individuals with Alström syndrome (AS). AS is an autosomal recessive disorder causing early blindness, progressive sensorineural hearing loss, cardiomyopathy, endocrine disorders, metabolic dysfunction, and abbreviated lifespan. Method: Eleven individuals with AS participated. The study had a qualitative explorative design, giving voice to the participants’ perspectives on their situation. Data were collected using semi-structured interviews, which were subjected to conventional (inductive) qualitative content analysis. Results: The analysis revealed in the participants a quest for independence and an image of themselves as capable people willing to learn, but in constant need of support to continue learning throughout their lives to be as independent as possible. Conclusion: Based on the levels of functioning, i.e. personal resources, revealed in the interviews, supervisors, caregivers, and teachers are encouraged to allow people with AS to be their own advocates, as they know best how, what, and with whom they learn, and what type of sensory material – tactile, auditory, visual, or a combination – is most helpful. Implications for Rehabilitation Individuals with AS strive for independence, and to be independent they need to continue to learn throughout their lives. Individuals with AS know best how they learn, and should be asked what modalities are the most effective for them. The tactile modality for learning will continue throughout life and should be emphasized early in the individual’s education and rehabilitation.

Physical and psychological health, social trust, and financial situation for persons with Usher syndrome type 1

The article describes physical health, psychological health, social trust, and financial situation in persons with deafblindness due to Usher syndrome type 1 (USH1) in comparison with a cross-section of the Swedish population. Persons with USH1 were recruited through the Swedish Usher database. Totally, 87 adults received the Health on Equal Terms (HET) questionnaire. The HET was adjusted, thus the questions were translated into Swedish sign language, and a large font size, better contrast, and a structure compatible with the Braille script reader were also provided. The questionnaire comprises a wide range of domains related to health and wellbeing. In all, 60 persons responded (60% women, mean age: 49 years, range: 21–79 years). The persons with USH1 were compared to a cross section of the Swedish population that included 5738 individuals (56% women, mean age: 49 years, range: 16–84 years). Significant differences in physical health, psychological health, social trust, and financial situation as well as the odds ratio adjusted for sex and age, and its 95% confidence interval are reported. The psychological health, social trust, and financial situation of persons with USH1 were significantly poorer compared to the reference group although this was not the case for physical health. Persons with USH1 only expressed significantly more problems with headache compared to the cross section of the Swedish population. The respondents revealed major problems with fatigue, loss of confidence, and suicide thoughts and attempts. Major social trust and financial problems were reported in terms of refraining going out alone, not receiving help, having no one with whom to share thoughts, and confide in and being unable to obtain 15.000 SEK (approximately US

Everyday Life Situations of School-Aged Children with Severe Disabilities: What are the Goals for the Future? An Exploratory Study

1.724 or €1.544) in the case of an unforeseen situation. To identify factors associated with physical health, psychological health, social trust, and financial situation is important in the design of future rehabilitation strategies for persons with USH1. The high level of psychological distress and lack of social trust reported could be related to ontological insecurity, as well as lack of recognition from others. Special attention must be devoted to suicide behavior.

Determination and classification of the problems experienced by adults with single-sided deafness using ICF classification: an exploratory study using 26 participants

This study investigated present and future everyday life situations (ELS) in home, school, work, and leisure environments for a group of school-aged children with severe disabilities, including complex disorders and a combination of disabilities. The purpose was to explore universal ELS; clarify how the children can be supported in their development of autonomy; and to gather information on potential overall goals for interventions. To make data comparable, all reported ELS were linked to the International Classification of Functioning, Disability and Health, Child and Youth version (ICF-CY) and listed along with information on the setting. Both today, and in the future, recreational activities and participation in school or work were of highest importance, but few reported ELS involved directly interacting with other children. More ELS were predicted to occur outside the home and with a higher degree of autonomy. Therefore, interventions would be focused on the overall goal that children with severe disabilities take initiatives to become independent and to form relationships with others.

Long-term ophthalmic health care in Usher Syndrome type I from an ICF perspective

1. Previous studies have shown the application of ICF in classifying hearing problems using open ended questionnaire.2. The present study leveraged on that concept and used ICF in classifying hear ...