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

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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

Communication changes following non-glottic head and neck cancer management: The perspectives of survivors and carers

Purpose. Head and neck cancer (HNC) survivors may experience functional changes to their voice, speech and hearing following curative chemoradiotherapy. However, few studies have explored the impact of living with such changes from the perspective of the HNC survivor and their carer. The current study employed a person-centred approach to explore the lived experience of communication changes following chemoradiotherapy treatment for HNC from the perspective of survivors and carers. Method. Participants included 14 survivors with non-glottic HNC and nine carers. All participants took part in in-depth interviews where they were encouraged to describe their experiences of living with and adjusting to communication changes following treatment. Interviews were analysed as a single data set. Result. Four themes emerged including: (1) impairments in communication sub-systems; (2) the challenges of communicating in everyday life; (3) broad ranging effects of communication changes; and (4) adaptations as a result of communication changes. Conclusion. These data confirm that communication changes following chemoradiotherapy have potentially negative psychosocial impacts on both the HNC survivor and their carer. Clinicians should consider the impact of communication changes on the life of the HNC survivor and their carer and provide adequate and timely education and management to address the needs of this population

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

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

Clinical management of financial toxicity - identifying opportunities through experiential insights of cancer survivors, caregivers, and social workers

Perspectives of cancer survivors, caregivers, and social workers as key stakeholders on the clinical management of financial toxicity (FT) are critical to identify opportunities for better FT management. Semi-structured interviews (cancer survivors, caregivers) and a focus group (social workers) were undertaken using purposive sampling at a quaternary public hospital in Australia. People with any cancer diagnosis attending the hospital were eligible. Data were analysed using inductive-deductive content analysis techniques. Twenty-two stakeholders (n = 10 cancer survivors of mixed-cancer types, n = 5 caregivers, and n = 7 social workers) participated. Key findings included: (i) genuine concern for FT of cancer survivors and caregivers shown through practical support by health care and social workers; (ii) need for clarity of role and services; (iii) importance of timely information flow; and (iv) proactive navigation as a priority. While cancer survivors and caregivers received financial assistance and support from the hospital, the lack of synchronised, shared understanding of roles and services in relation to finance between cancer survivors, caregivers, and health professionals undermined the effectiveness and consistency of these services. A proactive approach to anticipate cancer survivors’ and caregivers’ needs is recommended. Future research may develop and evaluate initiatives to manage cancer survivors and families FT experiences and outcomes

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

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

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

Experiences of communication changes following spinal cord injury: a qualitative analysis

Voice and communication changes can occur following cervical spinal cord injury due to dysfunction of the respiratory and phonatory subsystems. Few studies have explored the "lived experience" of communication changes post cervical spinal cord injury. Furthermore, the impacts of these changes on community activity/participation and requirements for psychosocial adjustment have not been well-elucidated. The current study explored the experience of communication changes in non-ventilated individuals following cervical spinal cord injury, using a biopsychosocial framework.Semi-structured interviews were conducted with 14 community-dwelling non-ventilated individuals with cervical spinal cord injury. Thematic analysis was undertaken using an inductive approach. Themes were subsequently coded against domains of the World Health Organization International Classification of Functioning Disability and Health model, using established linking rules.Four main themes were identified: (1) how communication has changed; (2) difficulties getting the message across, (3) the multifactorial impact of communication changes on everyday life; and (4) strategies/support to adjust to communication changes. Communication changes had multifaceted effects on participants' functioning, and were represented equally across the Body Functions (12 codes), Activities/Participation (12 codes), and Environmental Factors (11 codes) domains of the model.Individuals with cervical spinal cord injury perceive and experience meaningful changes on communication function post-injury, with salient impacts to daily-living and social participation. IMPLICATIONS FOR REHABILITATION As a result of communication changes post-injury, individuals with cervical spinal cord injury experience several challenges across a variety of domains in daily life The current study highlights the benefit of using a biopsychosocial framework, such as The International Classification of Functioning, Disability and Health (ICF), to consider the complex and diverse impact of communication changes on the functioning of individuals with cervical spinal cord injury, as well as the influence of environmental factors, on rehabilitation planning The current data demonstrates the need for increased involvement of speech-language pathologists as core members of the multidisciplinary team, and for acute awareness by all health professionals of the potential impact of communication changes on rehabilitation and psychosocial adjustment in individuals with cervical spinal cord injury