The affective, behavioural, and cognitive reactions to a diagnosis of Primary Progressive Aphasia: A qualitative descriptive study.

OBJECTIVES: Receiving a diagnosis of neurodegenerative disorder is life changing. Primary progressive aphasia is one such disease. Understanding how receiving this diagnosis impacts on individuals may help plan support services. However, limited qualitative research from the perspectives of people with Primary Progressive Aphasia are available for suitable care planning. Current literature primarily focuses on experiences of family members. The present study aims to fill this gap by examining the affective, behavioural, and cognitive experiences of people with Primary Progressive Aphasia. METHODS: Semi-structured interviews were conducted with six participants with PPA. A qualitative descriptive approach was used to describe responses from participants on: (i) what they experienced prior to receiving their diagnosis; (ii) their experience of receiving the diagnosis; and (iii) how they were living with their PPA. Verbatim transcripts were analysed using thematic analysis to identify main themes. RESULTS: Analysis revealed a superordinate theme of Multifaceted Grief with subthemes described in sequence of research questions posed, representing the three phases of Pre-Diagnosis, Time of Diagnosis, and Post-Diagnosis. Themes collectively revealed participants' ongoing experience of loss in dealing with the evolving challenges of Primary Progressive Aphasia. Experiences of loss emerged with descriptions of feelings, thoughts, and limitations in relation to changes imposed by the illness, impacting daily activities and life roles central to participants' pre-diagnosis sense of self. CONCLUSION: Participants' affective, behavioural and cognitive reactions to their Primary Progressive Aphasia diagnosis marks the onset of Multifaceted Grief borne of loss of communication and cognition. Participants expressed a need for information regarding a possible Primary Progressive Aphasia trajectory and support to enable a successful transition as their disease progressed. Collaborative engagement between speech pathologists and people with Primary Progressive Aphasia incorporates addressing all levels of the International Classification of Functioning and Health by considering neurological, psychological, and psychosocial experiences of the person with the diagnosis.

Parent experiences of variations in service delivery of Rapid Syllable Transition (ReST) treatment for childhood apraxia of speech.

PURPOSE: To understand parents' perceptions of Rapid Syllable Transition (ReST) treatment and their experience of either telehealth or combined parent-clinician delivery of speech-language pathology. METHOD: Thematic analyses of semi-structured interviews were conducted with 10 parents (5 telehealth, 5 parent-clinician) after their child completed 12 sessions of ReST treatment. RESULTS: Three themes were unique to telehealth: "telehealth was a million times easier," "technical problems weren't deal breakers," and "telehealth therapy has different boundaries." Three themes were unique to parent-clinician delivery: "therapy is something to get over and done with," "I wasn't very good at doing therapy," and "my child doesn't like me as his therapist." Both groups had themes related to the significance of childhood apraxia of speech, the importance of specialist treatment, and ReST being a "different way forward." CONCLUSIONS: Speech-language pathologists should carefully consider the suitability of caregiver-provided ReST treatment, and increase telehealth delivery of ReST treatment.

Stuttering and work life: an interpretative phenomenological analysis.

PURPOSE: The experiential claims of nine people who stuttered were examined with the purpose of determining the impact of stuttering on their work lives and to further examine what meaning they derive from these experiences. METHOD: Six male and three female participants aged 29-61 years (mean age, 41.4) who stuttered were interviewed and verbatim interview transcripts were analyzed using interpretative phenomenological analysis. Credibility was established by way of member checking, researcher comparison with only consensual themes and interpretations presented in the final analysis. RESULTS: Four Superordinate themes, "stuttering is always there; stuttering at work reveals a problem; stuttering limits communication; and stuttering limits occupational progression" were distilled by descriptive and interpretative treatment of the interview transcripts. The interpretative level of analysis identified self-stigma as central to the meaning derived from these experiences. Participants' expectation of stigmatizing public attitudes, together with their own self-validation of such attitudes perpetuated diminished feelings about self-esteem and self-efficacy. Fear of negative evaluation may be heightened in the work context and might mediate feelings of self-stigma in this context. CONCLUSIONS: Superordinate themes and their subthemes indicate that stuttering is problematic at work by way of perpetuating in the PWS an expectation of negative evaluation by others. Findings implicate issues of self-stigma as generating feelings of self-doubt and self-reproach in PWS in the workplace. The development and effects of self-stigma in PWS have broader implications than the workplace context alone and further examination of the issues of self-stigma in stuttering is recommended. EDUCATIONAL OBJECTIVES: At the end of this activity the reader will be able to: (a) describe how stuttering might affect workplace experiences; (b) describe the impact of stuttering on communication in the work context; (c) describe how qualitative methods can provide insights into the impact of stuttering in the work context; (d) describe the impact of self and public stigma on wellbeing in the work context.

Older people who stutter: barriers to communication and perceptions of treatment needs.

BACKGROUND: Little is known about the experience of stuttering for people over 55 years of age. Recent research has established that the same types of stuttering behaviours, cognitions, and emotional consequences experienced during young adulthood persist into older age. AIMS: The aims were to investigate perceptions of limitations to activity and participation in a group of older people who stuttered into adulthood. A further aim was to find out their perceptions about treatment. METHODS & PROCEDURES: This was a qualitative study involving eleven participants, eight males and three females over 55 years of age (mean age = 70.7, standard deviation = 9.13 years, range = 57.2-83.8 years) who self-reported stuttering into adulthood. Participants were randomly assigned to two focus groups for the discussion of topic questions posed by a moderator. The discussion was video- and audio-recorded, transcribed, and analysed using a comparative thematic analysis to derive emergent themes in relation to the topic questions. OUTCOMES & RESULTS: Stuttering can impact on the lives of older people in a similar way to younger people who stutter. Participants who continued to work felt more limited by their stuttering because work involved unpredictable speaking situations with unfamiliar people. Others who had retired experienced some relief from these limitations because they were no longer required to communicate in a work context. The acceptance of stuttering was a theme expressed by some participants, and acceptance diminished the limitations because these older people were less fearful of the consequences of their stuttering. However, others remained constrained by the impact of stuttering on their communication and struggled with a fear of speaking and a fear of negative evaluation by others. They applied learnt and self-devised techniques to assist their speech and felt that if fear of speaking was removed and their self-confidence increased, communication might be better. They would like effective, individual, and short-term treatment with speech-language pathologists who are knowledgeable about stuttering and sensitive to their emotional needs. CONCLUSIONS & IMPLICATIONS: Older people who stutter experienced limitations to participation because of their stuttering and there are implications for their future ability to remain independent and connected to relevant people and services. Further investigation of these limitations and research into effective intervention is indicated.

A life-time of stuttering: how emotional reactions to stuttering impact activities and participation in older people.

PURPOSE: The International Classification of Functioning, Disability and Health (ICF) framework has a pragmatic focus on how impairment impacts the individual's activities and participation. Stuttering is known to impact communication in younger adults but this has not been established in older people who stutter. In this study, emotional reactions to stuttering were investigated in a group 55 years and older who self-reported stuttering since childhood. METHOD: This was a cross-sectional descriptive design. Twelve participants who self-reported that they still stuttered and in whom stuttering was confirmed, and 14 controls completed the Fear of Negative Evaluation Scale (FNES), The Endler Multi-dimensional Anxiety Scales-Trait (EMAS-T) and The Australian Personal Wellbeing Index (PWA-I). Participants whose stuttering persisted also completed the Overall Assessment of Speakers Experience of Stuttering (OASES). RESULTS: The group who stuttered scored significantly higher on the FNES, with scores in the social phobia range. Responses on the OASES showed that stuttering continues to be a negative experience for this older group. Results for the EMAS-T and PWA-I were within the average range across both participant groups however significant differences existed between the groups in the social evaluative and physical danger domains of the EMAS-T, and the satisfaction with health domain of the PWA-I. CONCLUSIONS: Significant fear of negative evaluation, which is the key feature for social anxiety, was found in the group of older people who stuttered with a higher level of trait anxiety in social evaluative domains. The OASES showed that they also reacted to stuttering and communication in daily situations with moderate to severe impact scores which showed that stuttering impacted on speaking activities and by those negative experiences limited communication. Limited communication and restricted participation in the lives of older people have implications for healthy productive ageing and this is discussed.

The persistence of stuttering behaviours in older people.

OBJECTIVE: To measure and describe the speech characteristics of a group of 16 people over the age of 55 years who self-reported stuttering into adulthood. DESIGN: A cross-sectional, descriptive design was used. SUBJECTS: Sixteen participants were divided into two groups: a group of 12, (mean age 68.8) who self-reported that they continued to stutter in older age, and a group of four who self-reported recovery from stuttering in adulthood (mean age 75.5). METHODS: Speech samples during face-to-face and telephone conversations were analysed for stuttering frequency (%SS) and stuttering behaviours using the Lidcombe Behavioural Data Language. RESULTS: Descriptive statistics showed that all participants in the persistent stuttering group evidenced stuttering with varying severity. In the group of four who reported recovery, one participant presented with measurable stuttering behaviours in the conversational and telephone sample. Participants, in the group who reported persistence of stuttering evidenced the full range of stuttering behaviours seen in younger adults. CONCLUSION: Stuttering is a disorder that may persist for some beyond 55 years of age. This result compels investigation to explore how stuttering impacts on activity and participation for this older group.