Linda Worrall

What people with aphasia want: Their goals according to the ICF

Background: The goals of people with aphasia should guide service delivery. Services are increasingly influenced by the International Classification of Functioning, Disability and Health (ICF) (WHO, 2001), but little is yet known about whether the goals of people with aphasia span the full spectrum of the ICF. Aims: The purpose of this study was to describe the goals of people with aphasia and to code the goals according to the ICF. Methods & Procedures: A qualitative descriptive research approach was used involving semi-structured in-depth interviews with 50 participants with aphasia post-stroke. Interviews were videotaped and transcribed verbatim and then analysed using qualitative content analysis. The goals of a 30% consecutive subsample were then coded using the ICF. Outcomes & Results: Nine broad categories of goals were identified. Participants with aphasia wanted to return to their pre-stroke life and to communicate not only their basic needs but also their opinions. They also wanted information about aphasia, stroke, and available services; more speech therapy; greater autonomy; and dignity and respect. They identified the importance of engagement in social, leisure, and work activities as well as regaining their physical health. Interestingly, their goals included wanting to help others. Goals could be linked to all ICF components within the ICF, with the majority linked to Activities and Participation, followed by Environmental Factors, Body Functions and Structures, and Personal Factors. Conclusions: People with aphasia in this study were able to articulate a wide range of goals post-stroke that encompassed all of the ICF components but had a particular focus on the Activity and Participation components.

Designing effective written health education materials: Considerations for health professionals

Purpose: Written health education materials can only be effective if they can be read, understood, and remembered by patients. The purpose of this article was to review the literature about features that should be incorporated into written health education materials to maximize their effectiveness, identify where there is consensus and debate about which features should be incorporated, and develop recommendations that health professionals can use when reviewing their existing materials and designing new materials. Method: Literature review of published research and education articles. Results: There is a large number of features that need to be considered when designing written health education materials so that they are suitable for the target audience and effective. Although there is consensus about the majority of features that should be included, further research is needed to explore the contribution of certain features, such as illustrations, to the effectiveness of written materials and the effect of well-designed written materials on patient outcomes. Conclusions: Health professionals need to provide their patients with written health education materials that are patient-orientated and designed according to the best practice principles in written health education material design.

Social participation for older people with aphasia: The impact of communication disability on friendships

Abstract Purpose: The language changes experienced by a person with aphasia following a stroke often have sudden and longlasting negative impact on friendships. Friendship relationships are core to social engagement, quality of life, and emotional well-being. The aims of this study were to describe everyday communication with friends for older people with and without aphasia and to examine the nature of actual friendship conversations involving a person with aphasia. Method: This naturalistic inquiry drew data from two phases of research: a participant observation study of 30 older Australians, 15 of whom had aphasia following a stroke, and a collective case study using stimulated recall to examine friendship conversations involving an older person with aphasia. Results: People with aphasia communicated with fewer friends and had smaller social networks. “Friendship” was a core domain of communication for older people and participation in leisure and educational activities was focal in everyday communication with friends. Case study data of conversations between three older people with aphasia and their friends illuminated features of “time,” the role of humour, and friends having shared interests. Conclusion: Aphasia has been found to impact on friendships. A need exists for research and intervention programs to address communication with friends for older people with aphasia.

Classifying communication disability using the ICF

Health classification schemes not only affect funding of speech-language pathology services but the terminology used in the classification affects the way the profession communicates externally to its stakeholders and internally within the profession. This paper describes the classification scheme of the World Health Organizations International Classification of Functioning, Disability and Health (ICF). While the conceptual framework of the ICF has been established within the profession, the detailed classification scheme is becoming increasingly important to speech-language pathologists. The implementation of the classification worldwide presents many opportunities for speech-language pathologists. Details of the ICF, however, continue to be “work in progress,” particularly in areas highly relevant to speech-language pathology such as the differentiation of the Activity and Participation components and their qualifiers. This uncertainty, together with other limitations, needs to be acknowledged by the profession. A research agenda is proposed that aims to place the speech-language pathology profession firmly at the forefront of ICF developments, so that the full scope of the professions work is suitably acknowledged in the future.

A qualitative study of the transition from hospital to home for individuals with acquired brain injury and their family caregivers

Primary Objective: To explore the transition experiences from hospital to home of a purposive sample of individuals with acquired brain injury (ABI). Research Design: Phenomenological, qualitative design. Methods and Procedures: Semi-structured interviews were conducted with 13 individuals with ABI (mean time since discharge = 15.2 months) and 11 family caregivers. Each interview was recorded, transcribed verbatim and then inductively analyzed. Results: Through the inductive analysis process, a summary coding framework was developed that included that following eight main categories: the hospital experience; the transition process; the role of family caregivers; post-discharge services; friendship networks and community involvement; meaningful activities and time management; physical and psychological wellbeing; and barriers and facilitators. Conclusions: The results of the study provide valuable insights into the lived experiences of participants and provide evidence to support the existence of a distinct transition phase within the ABI rehabilitation continuum; additional to and closely associated with the acute, post-acute and community integration phases.

The effect of hearing impairment in older people on the spouse

The prevalence of hearing impairment (HI) in older people and its detrimental effects on their quality of life and well-being is well known. To date however, there have been few studies investigating the impact on the persons spouse. To investigate this topic, a qualitative study consisting of in-depth interviews was conducted with five female and five male spouses of older people with HI. The aims of the study were: (1) to describe the spouses’ experiences of living with someone with a HI; (2) to describe the effect of HI on the couples’ communication and relationship; and (3) to identify coping strategies adopted by spouses. An interpretive analysis revealed four themes that described the experience of spouses of older people with HI: (1) the broad ranging effects of the HI on the spouses’ everyday lives; (2) the spouses’ need to constantly adapt to their partners’ HI; (3) the effect of acceptance of the HI on the spouse; and (4) the impact of ageing and retirement. Spouses in this study experienced a wide range of effects as a result of their partners’ HI. Implications for audiological rehabilitation are discussed.

Identifying the communication activities of older people with aphasia: Evidence from naturalistic observation

Background : Increasingly there is a call from clinicians and researchers for measures that document the impact of aphasia on a persons everyday communication. Do existing assessments of communication disability adequately sample communication activities relevant to our clients? Communication skills and networks change with age. A need exists to determine the everyday communication activities of older people and in particular those with aphasia. Aims : The primary aim of this study was to describe and compare the everyday communication activities of older people with aphasia and healthy older people who are living in the community. A secondary aim was to investigate the content validity of the American Speech-Language Hearing Association Functional Assessment of Communication Skills for Adults (ASHA FACS, 1997) for older Australians. Methods & Procedures : Naturalistic observation was the method of choice for detailing the everyday communication of 15 older people with chronic aphasia following stroke and a matched group of 15 healthy older people who were living in the community. Researchers, in the role of participant observer, took field notes for 8 hours, over three occasions within a week. A total of 240 hours of observation have been coded in terms of communication activity, topic, communication partners, and place of communication. A brief 5-day diary served to check the representativeness of the observational data. After each hour of observation, the researcher checked which ASHA FACS items had been observed. Outcomes & Results : Naturalistic observation provided a rich, rigorous, and systematic methodology for detailing the dynamics and complexities of authentic communication. The most common communication activities for both groups were conversations at home and in social groups. Real-life communication was revealed to serve the dual purposes of transaction and interaction. Results indicate that older people with aphasia engage in similar communication activities to healthy older people although differences were evident in the frequency of communication and in specific activities such as story telling, writing, commenting, and acknowledging. ASHA FACS items were generally relevant to older Australians living in the community. Conclusions : This study demonstrated that communication activity is multifaceted in terms of the type of communication and contextual factors. The observational data describe the effects of aphasia on a persons everyday communication activity and reveal the impact of aphasia on the social functions of communication including sharing information, maintaining and establishing relationships, and telling ones story. Functional communication assessment requires a greater focus on the interactional and uniquely interpersonal aspects of social communication.

The effectiveness of aphasia‐friendly principles for printed health education materials for people with aphasia following stroke

Background: Provision of health information to people with aphasia is inadequate. Current practice in providing printed health education materials to people with aphasia does not routinely take into consideration their language and associated reading difficulties. Aims: This study aimed to investigate if people with aphasia can comprehend health information contained in printed health education materials and if the application of aphasia‐friendly principles is effective in assisting them to comprehend health information. It was hypothesised that participants with aphasia would comprehend significantly more information from aphasia‐friendly materials than from existing materials. Other aims included investigating if the effectiveness of the aphasia‐friendly principles is related to aphasia severity, if people with aphasia are more confident in responding to health information questions after they have read the aphasia‐friendly material, if they prefer to read the aphasia‐friendly brochures, and if they prefer to read the brochure type that resulted in the greatest increase in their knowledge. Methods & Procedures: Twelve participants with mild to moderately severe aphasia were matched according to their reading abilities. A pre and post experimental design was employed with repeated measures ANOVA (p <. 05) used to investigate the effectiveness of the aphasia‐friendly principles. Outcomes & Results: While participants with aphasia comprehended health information from the existing printed education materials, participants comprehended 11.2% more information from materials that had an aphasia‐friendly format. No significant correlation between aphasia severity and aphasia‐friendly effectiveness was found. Participants were more confident in answering questions after they had read the aphasia‐friendly brochures. A clear preference for aphasia‐friendly brochures was not found and participants did not consistently select the brochure type that resulted in the greatest increase in their health knowledge. Conclusions: This preliminary investigation has found that aphasia‐friendly material does assist people with aphasia to comprehend health information. The benefits of providing aphasia‐friendly information have many clinical applications that extend beyond the provision of health information. The application of aphasia‐friendly principles to all written materials could prove beneficial in removing some of the barriers people with aphasia face in trying to comprehend written materials. In addition, this research has highlighted that a greater understanding of people with aphasias reactions to aphasia‐friendly materials and also the social impact of providing aphasia‐friendly information is required. Future research, that incorporates a qualitative research approach, will add valuable insight to these topics.

Factors influencing rehabilitation decisions of adults with acquired hearing impairment

Abstract Several rehabilitation interventions yielding comparable outcomes are available to adults with acquired hearing impairment. However, the reasons why people choose particular interventions and not others have not been systematically investigated. This study explored the factors influencing the rehabilitation decisions of adults with acquired hearing impairment. Four options (hearing aids, group communication program, individual communication program, and no intervention) were discussed using shared decision making with 153 adults with acquired hearing impairment who had not previously received hearing rehabilitation. A selected sub-sample of 22 participants described the factors that influenced their decision during a semi-structured interview. Using qualitative content analysis, seven categories of factors influencing rehabilitation decisions were identified: (1) convenience; (2) expected adherence and outcomes; (3) financial costs; (4) hearing disability; (5) nature of intervention; (6) other peoples experiences, recommendations, and support; and (7) preventive and interim solution. All categories of factors were a positive influence for a particular intervention for some participants and a negative influence for the same intervention for other participants. The results support a client-centred approach to decision making. Sumario Existen varias intervenciones en rehabilitación que conducen a resultados comparables, disponibles para adultos con trastornos adquiridos de la audición. Sin embargo, las razones por las que la gente escoge un tipo de intervención particular y no otro, no han sido sistemáticamente investigadas. El estudio exploró los factores que influyen en las decisiones de rehabilitación de adultos con trastornos adquiridos de la audición. Cuatro opciones (auxiliares auditivos, programa de comunicación grupal, programas de comunicación individual y ninguna intervención) fueron discutidas usando una toma compartida de decisiones con 153 adultos con trastornos adquiridos de la audición, quienes no habían recibido rehabilitación auditiva previa. Veintidós participantes de una sub-muestra seleccionada describieron los factores que influyeron en su decisión, por medio de una entrevista semi-estructurada. Utilizando un análisis cualitativo de contenido, se identificaron siete categorías de factores que influyen en las decisiones de rehabilitación: (1) conveniencia; (2) adherencia esperada y resultados; (3) costos financieros; (4) discapacidad auditiva; (5) naturaleza de la intervención; (6) las experiencias, recomendaciones y apoyo de otras personas, y (7) soluciones preventivas y provisionales. Todas las categorías de factores fueron una influencia positiva para cada intervención particular en algunos participantes y una influencia negativa para la misma intervención en otros participantes. Los resultados apoyan un enfoque centrado en el cliente para la toma de decisiones.

Interviews with people with aphasia: Environmental factors that influence their community participation

Background: Speech‐language pathologists have been encouraged to create communication‐friendly environments to enable the everyday participation of their clients with aphasia. However, we still do not know the scope of the negative environmental factors (barriers) and positive environmental factors (facilitators) that need to be addressed in order to create these types of environments. The authors wish to acknowledge the contributions of the research participants and RSL Care. This study was also proudly supported by the Queensland Governments Growing the Smart State PhD Funding Program and may be used to assist public policy development. The State of Queensland accepts no responsibility for decisions or actions resulting from any information supplied. The views and information contained in the research do not necessarily represent the views or opinions of the Queensland Government and carry no endorsement by the Queensland Government. Aims: This investigation explores the environmental factors that hinder or support the community participation of adults with aphasia. Specifically, the in‐depth interview study asked: (a) What environmental factors are perceived by people with aphasia to hinder their community participation? (b) What environmental factors are perceived by people with aphasia to support their community participation? (c) What themes underlie the environmental factors that are perceived to hinder or support the community participation of adults with aphasia? A companion study (Howe, Worrall, & Hickson, in press) reports the findings of an observational investigation that addressed similar research questions. Methods and Procedures: The study used the research strategy of qualitative description. Semi‐structured in‐depth interviews were conducted with 25 adults with aphasia. All participants had aphasia caused by a stroke, lived in the community, and were at least 6 months post stroke. Informants were 34 to 85 years old with varied aphasia severity as measured by the Western Aphasia Battery. Qualitative content analysis was used to analyse the data. Outcomes and Results: The study identified 156 barriers and 206 facilitators that were grouped into six types of environmental factors (i.e., Barriers Related to other People, Physical Barriers, Societal Barriers, Facilitators Related to Other People, Physical Facilitators, and Societal Facilitators). In addition, the research revealed seven themes: (a) Awareness of Aphasia; (b) Opportunity for Participation; (c) Familiarity; (d) Availability of Extra Support for Communication; (e) Communication Complexity; (f) Message Clarity; (g) Time Available for Communication. Conclusions: This study has identified a wide range of barriers and facilitators and several themes that speech pathologists and policy makers need to consider in order to make community environments more accessible for people with aphasia.