“It’s got to be more than that”. Parents and speech-language pathologists discuss training content for families with a new speech generating device

Purpose: Although parent-implemented interventions for children with a speech-generating device (SGD) have been well researched, little is known about parents’ or speech-language pathologists’ (SLPs) views around parent training content. In this project, we aimed to identify areas that parents and SLPs consider should be included in training for families with a new SGD. Methods: Seven parents of children with an SGD and three SLPs who were new to the SGD field, participated in individual semi-structured interviews. Ten SLPs experienced in SGD practice took part in two focus groups. Data were analysed using grounded theory methods. Results: Participants identified the following areas suitable for inclusion in a family SGD training package: (a) content aimed at improving acceptance and uptake of the SGD, including technical guidance, customisation and reassurance around SGD misconceptions; (b) content around aided language development and (c) home practice strategies, including responsivity, aided language stimulation and managing children’s motivation. Conclusions: Participants identified diverse training targets, many of which are unexplored in parent-training research to date. Their recounted experiences illustrate the diversity of family capacity, knowledge and training priorities, and highlight the need for collaborative planning between families and SLPs at all stages of SGD training.

• Implications for Rehabilitation

• Training needs for families with a new speech generating device (SGD) are diverse, ranging from technology-specific competencies to broader areas, such as advocacy, teamwork and goal-setting skills.

• Each family with a new SGD will have a unique profile of training needs, determined by individual learning capacity, priorities, prior knowledge and experience, as well as their child’s current communication skills and future support needs.

• Parents and speech-language pathologists (SLPs) may hold different priorities concerning family SGD training, necessitating ongoing team discussion.

     

A randomized controlled trail of combination therapy of neuromuscular electrical stimulation and balloon dilatation in the treatment of radiation-induced dysphagia in nasopharyngeal carcinoma patients

Dysphagia is a most common complication induced by radiotherapy in nasopharyngeal carcinoma (NPC) patients. This randomized controlled trail (RCT) was performed to evaluate the therapeutic effect of combination therapy of neuromuscular electrical stimulation (NMES) and balloon dilatation in the treatment of radiation-induced dysphagia in NPC patients. Sixty NPC patients with radiation-induced dysphagia were assigned to either the combination rehabilitation group (treatment group) or the routine rehabilitation group (control group) at random. Both groups were subjected to routine rehabilitation treatment, while the combination rehabilitation group also received combination therapy of NMES and balloon dilatation for 4 months. The water swallow test (WST) and videofluoroscopic swallowing study (VFSS) were used to evaluate the severity of dysphagia. The treatment group showed a significant improvement in swallowing function when compared with the control group. When the WST was used, the efficacy rate (percentage of patients with excellent and effective results) of treatment group was higher than that of control group (90.1 vs. 76.3%), and the difference was statistically significant (χ² = 8.55, p = 0.036). When the VFSS was used, the videofluoroscopy results in our study showed that the values of oral transit time (OTT), swallow reaction time (SRT), pharyngeal transit time (PTT) and laryngeal closure duration (LCD) in treatment group were notably improved when compared with those in control group. In conclusion, combination rehabilitation treatment can improve swallow function in the treatment of radiation-induced dysphagia in NPC patients.

Implications for Rehabilitation

• Dysphagia is also a most important complication associated with radiotherapy and may result in serious complications, such as aspiration pneumonia, and permanent or long-term feeding tube dependence which significantly decrease the quality of life of nasopharyngeal carcinoma patients (NPC).

• Rehabilitation treatment is the most important therapy scheme for radiation-induced dysphagia, and neuromuscular electrical stimulation and balloon dilatation are useful therapy method for dysphagia.

• Combination rehabilitation treatment can improve swallow function in the treatment of radiation-induced dysphagia in NPC.

     

Dysarthria and dysphagia are highly prevalent among various types of neuromuscular diseases

Abstract

Purpose: Patients with a neuromuscular disease (NMD) can present with dysarthria and/or dysphagia. Literature regarding prevalence rates of dysarthria and dysphagia is scarce. The purpose of this study was to determine prevalence rates, severity and co-presence of dysarthria and dysphagia in adult patients with NMD. Method: Two groups of adult patients with NMD were included: 102 consecutive outpatients (the “unselected cohort”) and 118 consecutive patients who were referred for multidisciplinary assessment (the “selected cohort”). An experienced speech-language pathologist examined each patient in detail. Results: The pooled prevalence of dysarthria was 46% (95% CI: 36.5–55.9) and 62% (95% CI: 53.3–70.8) in the unselected and selected cohorts, respectively. The pooled prevalence of dysphagia was 36% (95% CI: 27.1–45.7) and 58% (95% CI: 49.4–67.2) in the unselected and selected cohorts, respectively. There was a modest but significant association between the presence of dysarthria and dysphagia (r_s?=?0.40; p?<?0.01). Although the dysphagia was generally mild, dysarthria was moderate to severe in 15% of the dysarthric patients. Conclusion: The prevalence rates of dysarthria and dysphagia among patients with various types of NMD are high. Physicians should therefore be aware of this prevalence and consider referring NMD patients to a speech-language pathologist.

• Implicatons of Rehabilitation

• Both dysarthria and dysphagia are highly prevalent among patients with neuromuscular diseases; moreover, although often mild, these disorders can occur relatively early in the course of the disease.

• Clinicians should routinely check for signs and symptoms related to dysarthria and/or dysphagia in patients who present with a neuromuscular disease, preferably using standardised instruments.

     

A collaborative approach to supporting communication in the assessment of decision-making capacity

Purpose: This paper explores the clinical implications of acquired communication disorders in decisional capacity. Discipline-specific contributions are discussed in a multidisciplinary context, with a specific focus on the role of speech and language pathologists (SLPs). Method: Key rehabilitation issues in determining decisional capacity are identified. The impact of communication impairment on capacity is discussed in light of the research literature relating to supportive communication and collaborative practice that respects human rights. Results: Guidelines are presented for professionals involved in the assessment of the decisional capacity of individuals with communication disorders of neurological origin. They guide an assessor through: assessing cognition, language and speech; determining preferred communication domains; and practical strategies and considerations for maximising communication. Conclusion: There is a dearth of guidelines available that deal with augmenting and supporting communication of individuals with acquired communication disorders of neurological origin when it comes to assessing legal decision-making capacity. Capacity assessment is a multidisciplinary realm, and the involvement of SLPs is key to maximising the decision-making capacity of these individuals.

• Implications for rehabilitation

• All clinicians have an obligation to maximise client autonomy and participation in decision-making.

• Assessments of capacity should involve a general cognitive ability assessment, followed by a decision-specific assessment tool or question set for the decision facing the patient.

• The involvement of speech and language pathologists (SLPs) is key to assess and facilitate capacity determinations in instances of cognitive-communication disorder.

• Impairments in different aspects of auditory comprehension require different accommodations.

     

Ultrasound in dysphagia rehabilitation: a novel approach following partial glossectomy

Purpose: While the presence of dysphagia following partial glossectomy has been widely reported, there is insufficient quality evidence to guide clinical decision making about the treatment of this disorder. This study investigated a novel dysphagia rehabilitation approach using ultrasound tongue imaging for patient training.

Method: Initially, a pilot study was conducted to investigate the feasibility of ultrasound visual feedback during swallow tasks. The protocol was then replicated using a single-case experimental designed study to investigate therapeutic effect. Swallow, speech, and oromotor functions were measured across multiple baselines using an A-B-A intervention study design.

Results: During intervention, both participants were able to interpret ultrasound tongue images during swallow tasks. Following intervention, positive therapeutic effect was achieved with reduced frequency of aspiration and self-initiated swallow strategies. Generalization of intervention was evidenced by reduced bolus transit duration on videofluoroscopy and improved functional oral intake scores. Speech and oromotor functions remained stable throughout the study demonstrating experimental control.

Conclusions: This study establishes that ultrasound visual feedback is feasible in dysphagia rehabilitation following partial glossectomy. In addition, the predicted therapeutic effect specifically to swallow but not speech or oromotor functions were demonstrated.

• Implications for Rehabilitation

• Partial glossectomy results in altered tongue shape, movement, and function which negatively impact on speech and swallowing

• There is limited research evidence to support previously used speech pathology interventions (in particular, tongue range of movement exercises) to rehabilitate dysphagia following tongue cancer surgery

• The tongue, and hence oral phase of swallowing, can be viewed by placing an ultrasound probe under the chin

• Ultrasound scanning of the tongue is not invasive, can be repeated without dosage side effect. It’s also comfortable for the patient and if a portable probe and monitor are used, can be performed within a variety of clinical settings for assessment or therapy

• This study shows specific therapeutic benefit following ultrasound visual feedback along with a motor learning approach to rehabilitate swallow function following partial glossectomy

• Visual and verbal feedback that focus specifically on the motor movements undergoing adaptation (e.g., tongue wave movement, tongue elevation, bolus clearance) following partial glossectomy are recommended

• Patients who are able to see the ultrasound monitor, hear the feedback given, are cognitively able to self-evaluate tongue movement, and remember intervention goals will most benefit from ultrasound tongue visual feedback in therapy

• Clinicians also benefit from visualizing the tongue with ultrasound during assessment and therapy as a direct view reduces the subjectivity of rating task performance

     

Dysphagia in Duchenne muscular dystrophy: practical recommendations to guide management

Purpose: Duchenne muscular dystrophy (DMD) is a rapidly progressive neuromuscular disorder causing weakness of the skeletal, respiratory, cardiac and oropharyngeal muscles with up to one third of young men reporting difficulty swallowing (dysphagia). Recent studies on dysphagia in DMD clarify the pathophysiology of swallowing disorders and offer new tools for its assessment but little guidance is available for its management. This paper aims to provide a step-by-step algorithm to facilitate clinical decisions regarding dysphagia management in this patient population.

Methods: This algorithm is based on 30 years of clinical experience with DMD in a specialised Centre for Neuromuscular Disorders (Inkendaal Rehabilitation Hospital, Belgium) and is supported by literature where available.

Results: Dysphagia can worsen the condition of ageing patients with DMD. Apart from the difficulties of chewing and oral fragmentation of the food bolus, dysphagia is rather a consequence of an impairment in the pharyngeal phase of swallowing. By contrast with central neurologic disorders, dysphagia in DMD accompanies solid rather than liquid intake. Symptoms of dysphagia may not be clinically evident; however laryngeal food penetration, accumulation of food residue in the pharynx and/or true laryngeal food aspiration may occur. The prevalence of these issues in DMD is likely underestimated.

Conclusions: There is little guidance available for clinicians to manage dysphagia and improve feeding for young men with DMD. This report aims to provide a clinical algorithm to facilitate the diagnosis of dysphagia, to identify the symptoms and to propose practical recommendations to treat dysphagia in the adult DMD population.

• Implications for Rehabilitation

• Little guidance is available for the management of dysphagia in Duchenne dystrophy.

• Food can penetrate the vestibule, accumulate as residue or cause aspiration.

• We propose recommendations and an algorithm to guide management of dysphagia.

• Penetration/residue accumulation: prohibit solid food and promote intake of fluids.

• Aspiration: if cough augmentation techniques are ineffective, consider tracheostomy.

     

Communication intervention in Rett syndrome: a survey of speech language pathologists in Swedish health services

Abstract

Purpose: To investigate communication intervention that speech language pathologists (SLPs) provide to people with Rett syndrome. Methods: A web-based survey targeting all Swedish SLPs working with people currently receiving support from habilitation services. Results: The SLPs reportedly followed recommended practice in the following aspects: (1) Information on communicative function was collected from several sources, including observation in well-known settings and reports from the client s social network, (2) Multimodal communication was promoted and, (3) Responsive partner strategies were largely targeted in the intervention. However, few instruments or standard procedures were used and partner instruction was given informally. Most SLPs used communication aids in the intervention and their general impression of using communication aids was positive. Further, augmentative and alternative communication (AAC) was estimated to increase and clarify communicative contributions from the person. Conclusions: Communication aids were reported to have a positive influence on communicative functions. Swedish SLP services followed best practice in several aspects, but there are areas with potential for development. Tools and best practice guidelines are needed to support SLPs in the AAC process for clients with Rett syndrome.

• Implications for Rehabilitation

• Communication aids were reported to increase and clarify communicative contributions from people with Rett syndrome.

• Systematic procedures and instruments for assessment, evaluation and partner instruction were used to a small extent.

• A limited range of communicative functions were targeted in the interventions.

• There is a need for developing best practice guidelines to support SLPs in the AAC process for this population should be clients with Rett syndrome.

     

A comparison of swallowing dysfunction in Becker muscular dystrophy and Duchenne muscular dystrophy

Purpose: Swallowing dysfunction has been reported in Duchenne muscular dystrophy (DMD), but has not been studied in Becker muscular dystrophy (BMD). The aims of this study were to report the characteristics of swallowing dysfunction in BMD compared with DMD.

Materials and methods: The study participants were 18 patients with BMD and 18 patients with DMD. All the patients were examined using videofluorography during swallowing of 5?mL of fluid. The penetration–aspiration scale (P–A scale) and the videofluorographic dysphagia scale (VDS) were used to evaluate dysphagia.

Results: Swinyard functional ability stage was not significantly different between the BMD and DMD groups. Rate of aspiration, P–A scale score, and total VDS score did not differ across groups, but the VDS item score for laryngeal elevation was lower in the BMD group than in the DMD group (median scores 4.5 and 9, respectively; p?r?=?0.78, p?Conclusion: Patients with BMD have swallowing problems similar to those observed in patients with DMD when matched according to physical functional status. These patients should be evaluated and followed-up for the duration of their disease.

• Implications for rehabiliation

• Dysphagia is one of the most critical problems in patients with progressive neuromuscular disease but dysphagia in patients with Becker muscular dystrophy (BMD) was not well known.

• Eighteen patients with BMD and 18 patients with Duchenne muscular dystrophy were examined with videofluorography.

• Patients with BMD have swallowing problems similar to those observed in patients with DMD.

     

The impact of humorous media on attitudes toward persons with disabilities

Purpose: To examine the relationship between disability-related humor and attitudes toward persons with disabilities in business students (i.e. “future employers”). Method: Students watched one of two films designed to reduce negative attitudes toward persons with disabilities (one humorous in tone and the other serious in tone) or no film at all, and completed a measure of attitudes toward persons with disabilities. Results: Results indicated that, after controlling for previous contact with persons with disabilities, age, and gender, students who watched the humorous film reported significantly more positive attitudes toward persons with disabilities. Conclusions: Disability humor may be an effective means of positively influencing attitudes toward persons with disabilities in future employers.

Implications for Rehabilitation

• The acceptance and integration of persons with disabilities into society continues to be limited by negative attitudes.

• Previous research has shown that employers with positive attitudes toward persons with disabilities may be more likely to hire a person with a disability than employers with negative attitudes.

• In this study, students who watched a humorous film reported significantly more positive attitudes toward persons with disabilities than students who watched a serious film or no film at all.

• Consequently, it may be beneficial to embed disability humor into job-placement strategies in order to improve attitudes and positively influence hiring decisions.

     

Regaining water swallowing function in the rehabilitation of critically ill patients with intensive-care-unit acquired muscle weakness

Purpose: Treatment in intensive care units (ICUs) often results in swallowing dysfunction. Recent longitudinal studies have described the recovery of critically ill people, but we are not aware of studies of the recovery of swallowing function in patients with ICU-acquired muscle weakness. This paper aims to describe the time course of regaining water swallowing function in patients with ICU-acquired weakness in the post-acute phase and to describe the risks of regaining water swallowing function and the risk factors involved.

Methods: This cohort study included patients with ICU-acquired muscle weakness in our post-acute department, who were unable to swallow. We monitored the process of regaining water swallowing function using the 3-ounce water swallowing test.

Results: We included 108 patients with ICU-acquired muscle weakness. Water swallowing function was regained after a median of 12?days (interquartile range =17) from inclusion in the study and after a median of 59?days (interquartile range=?36) from the onset of the primary illness. Our multivariate Cox Proportional Hazard model yielded two main risk factors for regaining water swallowing function: the number of medical tubes such as catheters at admission to the post-acute department (adjusted hazard ratio [HR]?=?1.282; 95% confidence interval [CI]: 1.099–1.495) and the time until weaning from the respirator in days (adjusted HR =1.02 per day; 95%CI: 0.998 to 1.008).

Conclusion: We describe a time course for regaining water swallowing function based on daily tests in the post-acute phase of critically ill patients. Risk factors associated with regaining water swallowing function in rehabilitation are the number of medical tubes and the duration of weaning from the respirator.

• Implications for rehabilitation

• Little guidance is available for the management of swallowing dysfunction in the rehabilitation of critically ill patients with intensive-care-units acquired muscle weakness.

• There is a time dependent pattern of recovery from swallowing dysfunction with daily water swallowing tests in the post-acute phase of critically ill patients.

• Daily water swallowing tests can be used to test swallowing dysfunction in the post-acute phase of critically ill patients

• The amount of medical tubes and the duration of weaning from respirator are associated risk factors for recovery of swallowing dysfunction.

     

Communication partner training of enrolled nurses working in nursing homes with people with communication disorders caused by stroke or Parkinson’s disease

Purpose: To evaluate the effect of a communication partner training programme directed to enrolled nurses working with people with communication disorders in nursing homes, using an individualised approach. Method: Five dyads consisting of a person with stroke-induced aphasia (n?=?4) or Parkinson’s disease (PD) (n?=?1) living in different nursing homes and his/her enrolled nurse participated in the study, which had a replicated single-subject design with multiple baselines across individuals. The main element of the intervention was supervised analysis of video-recorded natural interaction in everyday nursing situations and the formulation of individual goals to change particular communicative strategies. Results: Outcome was measured via blinded assessments of filmed natural interaction obtained at baseline, intervention and follow-up and showed an increased use of the target communicative strategies. Subjective measures of goal attainment by the enrolled nurses were consistent with these results. Measures of perceived functional communication on behalf of the persons with communication disorders were mostly positive; four of five participants with communication disorders and two of five enrolled nurses reported improved functional communication after intervention. Conclusions: The use of an individualised communication partner training programme led to significant changes in natural interaction, which contributes importantly to a growing body of knowledge regarding communication partner training.

• Implications for rehabilitation

• Communication partner training can improve the communicative environment of people with communication disorders.

• For people with communication disorders who live in institutions, the main conversation partner is likely to be a professional caretaker.

• An individualised approach for communication partner training that focussed on specific communication patterns was successful in increasing the use of supportive strategies that enrolled nurses used in natural interaction with persons with communication disorders.

• The training also positively affected the perceived functional communication of the persons with communication disorders.

     

Designing augmentative and alternative communication applications: the results of focus groups with speech-language pathologists and parents of children with autism spectrum disorder

Purpose: The purpose of this study was to gain insight from speech-language pathologists (SLPs) and parents of children with autism spectrum disorder (ASD) regarding appealing features of augmentative and alternative communication (AAC) applications.

Method: Two separate 1-hour focus groups were conducted with 8 SLPs and 5 parents of children with ASD to identify appealing design features of AAC Apps, their benefits and potential concerns. Participants were shown novel interface designs for communication mode, play mode and incentive systems. Participants responded to poll questions and provided benefits and drawbacks of the features as part of structured discussion.

Results: SLPs and parents identified a range of appealing features in communication mode (customization, animation and colour-coding) as well as in play mode (games and videos). SLPs preferred interfaces that supported motor planning and instruction while parents preferred those features such as character assistants that would appeal to their child. Overall SLPs and parents agreed on features for future AAC Apps.

Conclusion: SLPs and parents have valuable input in regards to future AAC app design informed by their experiences with children with ASD. Both groups are key stakeholders in the design process and should be included in future design and research endeavors.

• Implications for Rehabilitation

• AAC applications for the iPad are often designed based on previous devices without consideration of new features.

• Ensuring the design of new interfaces are appealing and beneficial for children with ASD can potentially further support their communication.

• This study demonstrates how key stakeholders in AAC including speech language pathologists and parents can provide information to support the development of future AAC interface designs.

• Key stakeholders may be an untapped resource in the development of future AAC interfaces for children with ASD.

     

Carbonation as a sensory enhancement strategy: a narrative synthesis of existing evidence

Purpose: Sensory enhancement techniques, like other compensatory strategies, aim to reduce dysphagia symptoms. The use of carbonated liquids has been proposed as a possible sensory technique, however to date, there is limited information of its efficacy or guidance for clinical implementation. A narrative synthesis was completed to determine the quality and strength of the evidence base for use of carbonation as a compensatory strategy in dysphagia rehabilitation.

Methods: From 101 articles initially identified, 14 articles met the study criteria. Eleven papers described the effects of carbonation on swallowing in healthy participants whereas three described the impact of carbonation in dysphagic populations. A narrative synthesis of papers was undertaken given the diversity of identified studies.

Results: Synthesis of findings was challenging given the exploratory phase of most research activity with diverse populations described and extensive differences in research methodologies. There is currently weak, but potentially positive evidence to support using carbonation as a compensatory technique in dysphagia rehabilitation.

Conclusion: Despite future potential, existing evidence fails to provide clear direction for the clinical implementation of carbonation. Validation of carbonation use with the dysphagic population requires further research with consistent, controlled methodologies, and larger cohorts of participants to inform potential for dysphagia rehabilitation.

• Implications for Rehabilitation

• The use of carbonated liquids has been proposed as a possible sensory enhancement technique which may facilitate changes to swallow physiology.

• However to date, there is limited information to direct clinical implementation.

• This paper provides a narrative synthesis of existing knowledge and highlights possible limitations of findings reported.

• Research to date has used disparate research methodologies in varied populations making synthesis of current findings challenging.

     

Development of a measure to assess effective listening and interactive communication skills in the delivery of children’s rehabilitation services

Purpose: Therapists’ listening and communication skills are fundamental to the delivery of children’s rehabilitation services but few measures comprehensively assess these skills. The 24-item Effective Listening and Interactive Communication Scale (ELICS) was developed to reflect a multifaceted conceptualization based on evidence in the literature. Method: Data from 41 pediatric rehabilitation therapists (occupational, physical, speech-language, recreation, and behavioural therapists; psychologists and social workers) were used to determine the factor structure, internal consistency, and construct validity of the subscales. Results: The measure contains four subscales with very good to excellent reliability: Consensus-oriented, Exploratory, Receptive, and Action-oriented Listening. Content validity was ensured by the development process. Conclusions: The ELICS portrays listening as a purposeful, goal-oriented, and relational activity. The measure allows clinicians to assess and reflect on their listening/communication skills, and can be used to evaluate professional development activities and interventions geared to improving these skills.

Implications for Rehabilitation

• Therapists’ listening and effective communication skills are essential to the successful delivery of children’s rehabilitation services, but few measures comprehensively assess these skills.

• Clinical encounters in pediatric rehabilitation involve various types of listening/communication skills: receptive listening, exploratory listening, consensus-oriented listening, and action-oriented listening.

• The ELICS is a valid and context-appropriate tool for the self-assessment of listening and communication skills in the context of pediatric rehabilitation practice.

• The ELICS allows clinicians (e.g., occupational, physical, and speech-language therapists) to assess and reflect on their listening/communication skills and may enhance the relationship-based practice of clinicians who provide therapy services to children with disabilities and their families.

     

Psychosocial difficulties from the perspective of persons with neuropsychiatric disorders

Purpose: The objective of this study is to determine whether persons with neuropsychiatric disorders experience a common set of psychosocial difficulties using qualitative data from focus groups and individual interviews. Method: The study was performed in five European countries (Finland, Italy, Germany, Poland and Spain) using the focus groups and individual interviews with persons with nine neuropsychiatric disorders (dementia, depression, epilepsy, migraine, multiple sclerosis, Parkinson’s disease, schizophrenia, stroke and substance dependence). Digitally recorded sessions were analysed using a step-by-step qualitative and quantitative methodology resulting in the compilation of a common set of psychosocial difficulties using the International Classification of Functioning, Disability and Health (ICF) as a framework. Results: Sixty-seven persons participated in the study. Most persons with neuropsychiatric disorders experience difficulties in emotional functions, sleeping, carrying out daily routine, working and interpersonal relationships in common. Sixteen out of 33 psychosocial difficulties made up the common set. This set includes mental functions, pain and issues addressing activities and participation and provides first evidence for the hypothesis of horizontal epidemiology of psychosocial difficulties in neuropsychiatric disorders. Conclusions: This study provides information about psychosocial difficulties that should be covered in the treatment and rehabilitation of persons with neuropsychiatric disorders regardless of clinical diagnoses.

• Implications for Rehabilitation

• Emotional problems, work and sleep problems should be addressed in all the treatments of neuropsychiatric disorders regardless of their specific diagnosis, etiology and severity.

• Personality issues should be targeted in the treatment for neurological disorders, whereas communication skill training may also be useful for mental disorders.

• The effects of medication and social environment on patient’s daily life should be considered in all the neuropsychiatric conditions.

     

“I had no idea what a complicated business eating is…”: a qualitative study of the impact of dysphagia during stroke recovery

Aim: Persons with dysphagia following stroke may experience uncomfortable symptoms such as persistent coughing, choking and poor salivary management. They may also spend long periods of time unable to eat or drink or with restrictions on oral intake. Experiences of dysphagia post-stroke are richly described in unsolicited narratives such as autobiographies on the stroke event, which often include details of the author’s journey through their stroke recovery. The aim of this study is to use autobiographical accounts to explore the experiences of those living with dysphagia following stroke.

Method: Published autobiographies narrating the author’s experiences of living with dysphagia following stroke were sourced. Ten autobiographies were retrieved and the texts were manually inspected. All references to eating, drinking and swallowing were extracted and pooled to form the data set. A qualitative approach using a six-step interpretive phenomenological analysis process was taken to analyze this data set.

Results: A wide range of interconnected themes emerged from the data, allowing further synthesis into six overarching super-ordinate themes. These six super-ordinate themes were: “physical consequences of dysphagia”; “process of recovery”; “coping and adjusting”; “changed relationships”; “society” and “control”.

Conclusions: This study highlights the unique contribution of autobiographical accounts in developing our understanding of living with dysphagia following stroke. The findings emphasize the significant emotional and social impact of dysphagia during the stroke recovery process and add further depth to our understanding of the experience of this clinical group.

• Implications for Rehabilitation

• Autobiographical accounts often hold valuable first-hand information on patient perspectives and journeys, which when viewed through the eyes of a qualitative researcher, can add depth to our understanding of particular healthcare experiences.

• Persons who experience dysphagia as a result of stroke travel a complex rehabilitation journey, involving the interaction of many physical, emotional and social considerations.

• Healthcare professionals should be aware of not only the physical, but also the significant psychosocial consequences of living with dysphagia following stroke.

• Further research is required in this field, so that the experiences of these persons can be better understood and findings can be used to contribute to high-quality and evidence-based service delivery.

     

Multi-professional and multi-dimensional group education – a key to action in elderly persons

Purpose: This study was intended to evaluate a multi-professional health-promoting and disease-preventive intervention organized as multi-professional senior group meetings, which addressed home-dwelling, independently living, cognitively intact elderly persons (80±), by exploring the participants’ experiences of the intervention. Method: The focus group methodology was used to interview a total of 20 participants. The informants had participated in four multi-professional senior group meetings at which information about the ageing process and preventive strategies for enhancing health were discussed. Results: The overall finding was that the elderly persons involved in the intervention lived in the present, but that the supportive environment together with learning a preventive approach contributed to the participants’ experiencing the senior meetings as a key to action. Conclusions: Elderly persons who are independent may have difficulty accepting information about preventing risks to health. However, group education with a multi-professional approach may be a successful model for achieving an exchange of knowledge, which may possibly empower the participants, give them role models, the opportunity to learn from each other and a sense of sharing problems with people in similar circumstances.

Implications for Rehabilitation

• Since elderly persons these days are expected to live beyond their 80 s, there is still time for interventions aimed at health promotion and disease prevention to have an effect on functional status and the quality of life of their remaining years.

• Elderly persons who are independent may have difficulty accepting information about preventing risks to health.

• Multi-professional health promoting and disease-preventive senior meetings could motivate elderly persons to act on behalf of their own health.

• Multi-professional collaboration combined with the group model made the participants in our study experience the senior meeting as a key to action.