Rebecca L. Nund

The lived experience of dysphagia following non-surgical treatment for head and neck cancer

Abstract The prevalence and severity of dysphagia in people treated non-surgically for primary head and neck cancer (HNC) is well documented. However, few studies have looked beyond the physiological impairment to explore the lived experience of dysphagia in the post-treatment period of HNC. The current study adopted a person-centred, qualitative approach to describe the experiences of people living with dysphagia in the months and years following non-surgical treatment for HNC. Using maximum variation sampling, 24 participants who had undergone radiotherapy treatment for HNC were recruited. Individual interviews were conducted to explore the impact of dysphagia on participants’ everyday lives. The themes identified included: (1) physical changes related to swallowing; (2) emotions evoked by living with dysphagia; (3) altered perceptions and changes in appreciation of food; and (4) personal and lifestyle impacts. The data revealed the breadth and significance of the impact of dysphagia on the lives of people treated curatively for HNC. Assessment and management in the post-treatment period must be sufficiently holistic to address both the changing physical states and the psychosocial needs of people with dysphagia following HNC. Rehabilitation services which focus only on impairment-based management will fail to fully meet the support needs of this clinical population.

Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner’s dysphagia, (3) the disconnect between carers’ expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

Emerging understanding of dosimetric factors impacting on dysphagia and nutrition following radiotherapy for oropharyngeal cancer

Research has reported relationships between 3‐dimensional (3D) radiation dose to head and neck structures and consequential swallowing/nutritional outcomes. However, this evidence is preliminary. The current study aimed to identify which reported dose constraints identified functional impairment at 6 months posttreatment.

Survivors' experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice

BACKGROUND It is known that people with dysphagia experience a number of negative consequences as a result of their swallowing difficulties following head and neck cancer management (HNC). However their perceptions and experiences of adjusting to dysphagia in the post-treatment phase, and the services received to assist this process, has not been studied. AIMS To explore the lived experience of people with dysphagia following non-surgical treatment for HNC and examine their perceptions of service needs. METHODS & PROCEDURES A demographically diverse group of 24 people who had received radiotherapy for HNC in the past five years, and experienced dysphagia as a result of treatment, were recruited using maximum variation sampling. Each participant took part in a semi-structured, in-depth interview, where they reflected on their adjustment to, and recovery from dysphagia following treatment for HNC, as well as the dysphagia-related services they received during their treatment. Thematic analysis was used to analyse the transcripts and to identify key themes that emerged from the data. RESULTS The main integrative theme was the desire for ongoing access to dysphagia-related services in order to adequately manage dysphagia. Within this integrative theme were five additional themes including: (1) entering the unknown: life after treatment for HNC; (2) making practical adjustments to live with dysphagia; (3) making emotional adjustments to live with dysphagia; (4) accessing support outside the hospital services; and (5) perceptions of dysphagia-related services. CONCLUSIONS & IMPLICATIONS The interviews revealed the need for both greater access to services and a desire for services which address the multitude of issues faced by people with dysphagia following HNC in the post-treatment period. Speech and language therapists managing this caseload need to ensure post-treatment services are available and address not only the physical but also the emotional and psychosocial changes impacting people with dysphagia in order to assist them to adjust to, and live successfully with dysphagia. Further research should be conducted to support the development of innovative services and to highlight dysphagia-related survivorship issues to governing bodies/policy makers.

Application of the International Classification of Functioning, Disability and Health (ICF) to People with Dysphagia Following Non-surgical Head and Neck Cancer Management

The International Classification of Functioning, Disability, and Health (ICF) is an internationally recognized framework which allows its user to describe the consequences of a health condition on an individual in the context of their environment. With growing recognition that dysphagia can have broad ranging physical and psychosocial impacts, the aim of this paper was to identify the ICF domains and categories that describe the full functional impact of dysphagia following non-surgical head and neck cancer (HNC) management, from the perspective of the person with dysphagia. A secondary analysis was conducted on previously published qualitative study data which explored the lived experiences of dysphagia of 24 individuals with self-reported swallowing difficulties following HNC management. Categories and sub-categories identified by the qualitative analysis were subsequently mapped to the ICF using the established linking rules to develop a set of ICF codes relevant to the impact of dysphagia following HNC management. The 69 categories and sub-categories that had emerged from the qualitative analysis were successfully linked to 52 ICF codes. The distribution of these codes across the ICF framework revealed that the components of Body Functions, Activities and Participation, and Environmental Factors were almost equally represented. The findings confirm that the ICF is a valuable framework for representing the complexity and multifaceted impact of dysphagia following HNC. This list of ICF codes, which reflect the diverse impact of dysphagia associated with HNC on the individual, can be used to guide more holistic assessment and management for this population.

Developing clinical skills in paediatric dysphagia management using human patient simulation (HPS)

Abstract Purpose: The use of simulated learning environments to develop clinical skills is gaining momentum in speech-language pathology training programs. The aim of the current study was to examine the benefits of adding Human Patient Simulation (HPS) into the university curriculum in the area of paediatric dysphagia. Method: University students enrolled in a mandatory dysphagia course (n = 29) completed two, 2-hour HPS scenarios: (a) performing a clinical feeding assessment with a medically complex infant; and (b) conducting a clinical swallow examination (CSE) with a child with a tracheostomy. Scenarios covered technical and non-technical skills in paediatric dysphagia management. Surveys relating to students’ perceived knowledge, skills, confidence and levels of anxiety were conducted: (a) pre-lectures; (b) post-lectures, but pre-HPS; and (c) post-HPS. A fourth survey was completed following clinical placements with real clients. Result: Results demonstrate significant additive value in knowledge, skills and confidence obtained through HPS. Anxiety about working clinically reduced following HPS. Students rated simulation as very useful in preparing for clinical practice. Post-clinic, students indicated that HPS was an important component in their preparation to work as a clinician. Conclusion: This trial supports the benefits of incorporating HPS as part of clinical preparation for paediatric dysphagia management.

Third-party disability in carers of people with dysphagia following non-surgical management for head and neck cancer

Abstract Purpose: Third-party disability pertains to the consequences of a person’s impairment which impacts on the functioning and ability of their family members or significant others. With the emergence of research demonstrating the pervasive effects of dysphagia following head and neck cancer (HNC) on the carer, the aim of this study was to identify the International Classification of Functioning, Disability and Health (ICF) domains and categories that describe the third-party disability of carers of people with dysphagia following HNC. Method: Twelve carers of people with dysphagia following HNC participated in individual semi-structured, in-depth interviews. Categories and sub-categories identified from the qualitative analysis were mapped to the ICF using the established linking rules. Results: The majority of the categories and sub-categories from the qualitative analysis were successfully linked to the ICF with most linking to the Activities and Participation component. A number of contextual factors were also identified as impacting on the functioning of carers. Conclusions: The ICF can be successfully used to describe the third-party disability in carers of people with dysphagia following HNC management. This information could be used by clinicians, researchers and policy makers to help establish evidence-based guidelines that include carers in the assessment and management of dysphagia associated with HNC. Implications for Rehabilitation Clinical levels of distress and reduced quality of life have been associated with caring for a person with dysphagia following head and neck cancer. The flow-on effects of dysphagia experienced by a carer or close family member can be understood as a third-party disability, which impacts on their functioning, activities and participation in the context of the environment and personal factors. Using the ICF to describe the indirect effects of dysphagia on the carer may help to guide the assessment and support of this population, and advocate for the inclusion of the concerns of the carer in dysphagia management.

Exploring Current Sensory Enhancement Practices Within Videofluoroscopic Swallow Study (VFSS) Clinics.

Whilst some research evidence supports the potential benefits of sensory enhancement strategies (SES) in dysphagia management, there is limited understanding of how SES are used in clinical services and the influencing drivers involved in selection during instrumental assessment. SES include modification of temperature, flavour, texture, chemesthetic qualities and bolus size of food/fluid. This study aimed to explore the use of SES within Australian Videofluoroscopic Swallow Study (VFSS) clinics providing adult services, via a qualitative methodology. Maximum variation sampling was used to select a cross section of speech-language pathologists (SLPs) with a range of experience working within 16 VFSS clinics across metropolitan and regional settings to participate in semi-structured, focus group or individual teleconference interviews. Content analysis of interview transcripts was conducted, with four themes emerging as influencing drivers of SES use, including: Patient factors influence SES use; Clinician factors influence SES use; Trials of SES require planning and organisation, and; Organisational barriers impact on SES use. These four themes were all connected through a single integrative theme: Extensive variations of SES procedures exist across clinical settings. Findings indicate that achieving alignment of clinical purpose and implementation of practices amongst VFSS clinicians will be complex given current diversity in SES use. Organisational issues and clinician training need to be addressed, and more research is needed to provide a stronger evidence base to inform clinical practice in this emerging area of dysphagia management.

Impact of Head and Neck Cancer Treatment on Survivors' Mealtime Experience: HNC Treatment Impact on Mealtime Experience

The objectives of the study were to develop a mealtime experience self‐assessment questionnaire that was head and neck cancer (HNC) survivors–driven and based on the International Classification of Functioning, Disability and Health (ICF) framework, and to identify common mealtime issues reported by HNC survivors.

Using patient simulation (HPS) for development of technical and non-technical skills for dysphagia management.

Dysphagia Research Society Annual Meeting and Post-Graduate Course March 5–8, 2014 The Loews Vanderbilt Hotel Nashville, Tennessee Springer Science+Business Media New York