To Örebro University

This case study concerns communication with an individual with congenital deafblindness (CDB). Previous studies indicate that individuals with CDB face several challenges in language and psychosocial development due to limited hearing and visual abilities. Specifically, this study describes a case examining the influence of sign language knowledge on the communication between an individual with CDB and a support person fluent in sign language at a residential home. Through a conversation analysis (CA)-based multimodal analysis of the interactions between the support person and the individual with CDB, examples are provided to illustrate how sign language knowledge is used in communication. The results reveal specific communication strategies used, which are suggested to derive from the support person's fluency in sign language. The study offers insights into how sign language knowledge contributes to a variety of communication strategies aimed at enhancing interaction with individuals with CDB.

PURPOSE: This commentary emphasizes the child's position and the right to develop language that enables communication with a parent who has deafblindness. We argue that societal services have a responsibility to ensure that this right is fulfilled. Deafblindness affects access to information and communication and has implications for family life when a parent has deafblindness. In such families, shared communication is essential for emotional bonds, parenting, and children's development, yet it often requires adaptations beyond spoken or visual sign language, including tactile and social haptic and other forms of communication.

METHOD: This commentary is based on a research project on family life and health in families where a parent has deafblindness and is grounded in the Convention on the Rights of the Child and the Convention on the Rights of Persons with Disabilities, in which we emphasize societal responsibility for supporting children's language development.

RESULT: The argument of the right for the child to develop language that enables communication with a parent with deafblindness and the responsibility of societal services is illustrated in the Swedish context. In Sweden, there is no syllabus for mother tongue instruction in Swedish Sign Language, which may reduce access to formal sign language education and undermine children's rights.

CONCLUSIONS: We discuss implications for education and family-centered services and argue that supportive interventions should target the entire family to promote shared language, inclusion, and children's well-being. To raise awareness of children of parents with deafblindness, we suggest the concept "children of deafblind adults," acknowledging their belonging to a cultural and linguistic minority.

PURPOSE: To describe how parents with deafblindness experience parenting and family life.

MATERIALS AND METHODS: This a qualitative interview study. Fourteen parents with deafblindness were interviewed. Most were mothers (n = 10), with ages ranging between 33 and 57 years (mean 46 years). Interviews were transcribed, and the analysis was done using inductive qualitative content analysis.

RESULTS: The analysis resulted in the overarching theme, 'Living family life as a parent with deafblindness is not a walk in the park, but it is rewarding', and three subthemes, 'Being a competent parent despite having deafblindness', 'Needing support to fulfil my parental obligations' and 'Parenting is a struggle due to my deafblindness'. The results encompass many experiences and feelings and illustrate the complex reality of these parents in their parental role and family life.

CONCLUSION: The parents expressed their joy in being parents, but these feelings were intertwined with negative aspects of being unable to take on the desired responsibility or not receiving the necessary support. When requested, tailored support should be offered from social services, health care and rehabilitation services in order for parents with deafblindness to take on the parental responsibility they want and to be able to actively participate in family life.

Introduction: People with congenital deafblindness (CDB) face challenges orienting themselves in time and activities. The aim of the current study is to identify and analyze how an adult with CDB and his support persons co-construct comprehensibility and predictability in his daily life.

Method: The study consists of video recordings of everyday dyadic interaction from a residential home. Conversation Analysis was used to explore interactional practices that afford orientation in time and activities.

Results: Results highlight several important practices: 1) repetitions of signs or other recognizable linguistic elements in a second turn to identify and confirm a reciprocally understood subject; 2) repetition of a sign placed first in the second part of a question-answer adjacency pair; 3) and the use of a visually based schedule to achieve mutual understanding.

Conclusion: The practices identified and analyzed accomplish security, predictability, and comprehensibility for the person with CDB and his support persons.

PURPOSE: Health literacy (HL) is a set of knowledge and skills that enables individuals to interpret and act upon health information, which is essential for health equity. There is a growing body of evidence in the field of HL in cancer care but there is, to our knowledge, no systematic review that explores the association between sociodemographic factors and HL among patients with cancer. The aim of this study was therefore to conduct a systematic review of the existing literature that assesses HL levels and the relationship between HL and sociodemographic factors in an adult cancer population.

METHODS: This is a systematic review and its protocol was registered in PROSPERO (ID: CRD42021164071). The study was conducted in accordance with the PRISMA statement. The literature search, from December 2009 to September 2023, was made in six databases, AMED, CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science Core Collection.

RESULTS: Fifteen studies were included in the review. The included studies used nine different measurement tools for assessing HL. In the included studies between 11.9 % and 86 % had limited HL. We identified a relationship between limited HL and annual income, education level, ethnicity, living in rural areas and multiple comorbidities.

CONCLUSION: The results indicate that limited HL is prevalent in the cancer population and should be acknowledge in everyday practice to meet health equity. Our awareness about sociodemographic factors and its association with HL, may enhance adherence to cancer treatment and quality of life, and lower physical and emotional distress.

BACKGROUND: The sign language interpreting service has undergone a tremendous change due to COVID-19 and remote interpreting has become a more frequent alternative to the face-to-face format. The aim of the study is to investigate how the interpreters perceive the organisation of remote interpreting in Sweden and how it has evolved since the COVID-19 pandemic.

METHOD: Interviews with 26 experienced remote interpreters, representing 19 of Sweden's 21 counties, were analysed with qualitative content analysis.

RESULTS: Three themes were revealed in the analysis. The first theme was regulation. It was stated that directives and regulatory decisions concerning provision of remote interpreting services were varied and unclear. Several different platforms were used when interpreting remotely. Some of the services had conducted risk analyses, whereas others had not. The second theme was modification, including adjusting interactions to suit the preferences and capabilities of the users (both signing and speaking parties), as well as adjustments to work environments and workplaces. The third theme, evolution of remote interpreting, showed that support and training were rare and varied. Although the processes and organisation of remote interpreting are not yet fully established in Sweden, remote interpreting is here to stay.

CONCLUSIONS: In Sweden, remote interpreting is a service that varies according to regulations and the type of assignments. The service would benefit from being more uniform and streamlined across Sweden, although consideration must be given to those involved with the service.