RESUMO
PURPOSE: Financial toxicity (FT) describes financial distress or hardship as an outcome of cancer and its treatment. Minimising the impact of FT requires early assessment and intervention. General practice plays a significant role in the support of a person with cancer and may have an important role in the management of FT. The purpose of this study was to understand perspectives of general practitioners (GP) on addressing FT in the primary care setting, which may then help inform strategies to further support collaborative efforts to address FT. METHODS: A qualitative interpretive approach was utilised for this study. GPs were recruited through a GP conference and other professional networks using purposive, snowballing sampling techniques. Data collection continued until sufficient rich data had been obtained. Interviews were recorded and transcribed verbatim. The data were analysed using inductive analysis techniques. RESULTS: Twenty (n = 20) GPs participated in semi-structured in-depth telephone interviews. GPs identified that their role positions them well to provide some FT support, but there are limitations. Perceptions and philosophies about cancer management were drivers of referrals and financial conversations. Priorities for care of FT by GPs included improved cost information provision and accessible support. CONCLUSION: GPs can play an important role in helping to address FT associated with cancer and its treatments if supported with the right information.
Assuntos
Medicina Geral , Clínicos Gerais , Neoplasias , Atitude do Pessoal de Saúde , Estresse Financeiro , Humanos , Neoplasias/terapia , Atenção Primária à Saúde , Pesquisa QualitativaRESUMO
The pervasive nature of dysphagia in the head/neck cancer (HNC) population necessitates a comprehensive evaluation approach, including both objective assessment of dysphagia, and subjective patient-reported functional measures. However, the congruence between clinician-rated and patient-perceived function is still not well understood. The current study investigated the association between objective clinician-rated swallow physiology (using the MBSImP) and patient-reported measures of swallowing-related quality of life (using the MDADI) in a secondary analysis of patients with oropharyngeal HNC treated with (chemo)radiotherapy. Seventy-nine patients with oropharyngeal HNC receiving (chemo)radiotherapy completed a standardised videofluoroscopic swallow study (VFSS) rated using the MBSImP, and the MDADI, at pre-treatment (baseline), 6 weeks and 3 months post-treatment as per a previous prospective RCT. Data on n = 67 participants were analysed as part of the secondary analysis. Association between MBSImP oral and pharyngeal composite scores versus MDADI Global and subscale scores was examined using ordinary least squares regression and mixed-effects general linear modelling (GLM). Univariable analyses demonstrated significant associations between MBSImP oral composite scores and each of the MDADI subscales, as well as the MBSImP pharyngeal composite scores and all MDADI subscales. GLM analysis revealed significant associations were maintained between MBSImP pharyngeal scores and the MDADI global and emotional subscale scores at the multivariable level, with the physical subscale trending towards significance. No significant association was observed between the MBSImP oral composite scores and any of the MDADI subscales at the multivariable level. This study found significant associations between objective measures of pharyngeal swallow physiology and patient-perceived swallowing-related quality of life. These findings suggest a higher degree of concordance between clinician-rated and patient-reported measures up to 3 months post-(C)RT than previously reported.
Assuntos
Transtornos de Deglutição , Neoplasias de Cabeça e Pescoço , Neoplasias Orofaríngeas , Quimiorradioterapia/efeitos adversos , Deglutição/fisiologia , Transtornos de Deglutição/diagnóstico por imagem , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/terapia , Humanos , Neoplasias Orofaríngeas/complicações , Neoplasias Orofaríngeas/radioterapia , Qualidade de VidaRESUMO
OBJECTIVE: Individuals with head and neck cancer residing in rural areas face numerous challenges accessing post-acute rehabilitation services, including speech pathology services. In order to inform future service enhancements, the key issues impacting access to, and the provision of, speech pathology head and neck cancer services in rural areas was explored through the perspectives of patients, carers, speech pathology clinicians and service managers. SETTING: A rural health referral network in Queensland consisting of tertiary, regional and remote hospitals. PARTICIPANTS: Twenty-eight participants, including 12 speech pathology staff/managers and 16 consumers (people with head and neck cancer/carers). DESIGN: Qualitative methodology using semi-structured interviews was analysed using content analysis. RESULTS: Two themes were identified from the consumer group including (a) navigating health services for head and neck cancer management and (b) burden of accessing head and neck cancer care. Speech pathology staff/managers interviews raised 3 themes: (a) transfer of care and access to local services, (b) workforce and workload and (c) travelling impacts the service our patients can receive. An integrative theme across both groups highlighted the perceived disparity in health care access that existed for people with head and neck cancer in rural areas. CONCLUSIONS: In rural areas, consumers face multiple barriers navigating the head and neck cancer treatment pathway, while health services encounter specific challenges ensuring access and equity in care. Despite the complexities, possible avenues for service change and service enhancement are proposed. Speech pathology services in rural areas need to proactively evaluate services and address existing disparities in order to enact positive change for people with head and neck cancer living outside metropolitan locations.
Assuntos
Neoplasias de Cabeça e Pescoço , Serviços de Saúde Rural , Patologia da Fala e Linguagem , Atenção à Saúde , Neoplasias de Cabeça e Pescoço/terapia , Acessibilidade aos Serviços de Saúde , Humanos , Pesquisa Qualitativa , Recursos HumanosRESUMO
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.
Assuntos
Transtornos de Deglutição/diagnóstico por imagem , Transtornos de Deglutição/terapia , Padrões de Prática Médica , Sensação , Adulto , Austrália , Fluoroscopia , Humanos , Seleção de Pacientes , Patologia da Fala e Linguagem/métodos , Gravação em VídeoRESUMO
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.
Assuntos
Adaptação Psicológica , Transtornos de Deglutição/reabilitação , Emprego , Neoplasias de Cabeça e Pescoço/terapia , Pesquisa Qualitativa , Qualidade de Vida , Adulto , Idoso , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/psicologia , Feminino , Neoplasias de Cabeça e Pescoço/complicações , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
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.
Assuntos
Transtornos de Deglutição/classificação , Neoplasias de Cabeça e Pescoço/complicações , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Atividades Cotidianas , Adulto , Idoso , Transtornos de Deglutição/etiologia , Transtornos de Deglutição/fisiopatologia , Transtornos de Deglutição/psicologia , Avaliação da Deficiência , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Relações Interpessoais , Masculino , Pessoa de Meia-IdadeRESUMO
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.
Assuntos
Transtornos de Deglutição/psicologia , Transtornos de Deglutição/terapia , Neoplasias Otorrinolaringológicas/psicologia , Neoplasias Otorrinolaringológicas/radioterapia , Lesões por Radiação/psicologia , Lesões por Radiação/reabilitação , Sobreviventes/psicologia , Adaptação Psicológica , Idoso , Terapia Combinada , Feminino , Seguimentos , Acessibilidade aos Serviços de Saúde , Humanos , Comportamento de Doença , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Qualidade de Vida/psicologia , Apoio SocialRESUMO
PURPOSE: People with head and neck cancer (HNC) require ongoing speech-language pathology (SLP) services into the post-acute recovery phase of care. However, there are recognised service inequities/barriers for people from rural areas who are unable to access SLP services locally, necessitating travel to metropolitan centres. This study implemented strategies to assist rural speech-language pathologists to work to full scope of practice and support post-acute rehabilitation services for people with HNC. METHOD: The study involved five SLP departments within a rural health referral network (one tertiary cancer centre, four rural sites). It involved a Plan-Do-Study-Act (PDSA) method, across two six month cycles, to achieve implementation of a model to support local SLP delivery of HNC care. Data collected included service activity, consumer feedback from people accessing local care, staff perceptions of the model and changes to local SLP service capabilities. RESULT: Staff identified four objectives for change across the two PDSA cycles including resource development, upskilling/training and improving communication, and handover processes. In cycle 1, multiple resources were developed such as an eLearning program for training and skill development. In cycle 2, a pilot trial of a shared-care model was implemented, which successfully supported a transfer of care to local services for eight people with HNC. The majority of consumers accessing HNC care locally were satisfied with the service and would recommend future people with HNC receive similar care. CONCLUSION: The PDSA process supported development and implementation of a model enabling local speech-language pathologists to offer post-acute care for people with HNC. This model helps rural people with HNC to access care closer to home by supporting rural clinicians to work to full scope of practice.
Assuntos
Transtornos da Comunicação , Neoplasias de Cabeça e Pescoço , Patologia da Fala e Linguagem , Humanos , Austrália , Neoplasias de Cabeça e Pescoço/complicações , Neoplasias de Cabeça e Pescoço/terapia , Patologia da Fala e Linguagem/métodosRESUMO
BACKGROUND: People with head and neck cancer (HNC) have complex health care needs; however, limited evidence exists regarding the nature or patterns of service access and use. This study explored the post-discharge health care needs and experiences of individuals with HNC from metropolitan and rural areas. METHODS: Health care appointments and services accessed by people with HNC were collated for 6-month post-treatment. Data analysis of the whole cohort examined patterns of access while journey mapping integrated participants' experiences of recovery. RESULTS: The 6-month service access journey was mapped for 11 people. Rural participants attended a significantly greater number of appointments (p = 0.012), higher canceled/missed appointments (p = 0.013), and saw more professionals (p = 0.007). Rural participants reported higher stress and burden due to service access barriers and unmet needs. CONCLUSIONS: Multiple challenges and inequities exist for rural people with HNC. Findings inform opportunities to enhance the post-treatment recovery of people with HNC in rural areas.
Assuntos
Assistência ao Convalescente , Neoplasias de Cabeça e Pescoço , Atenção à Saúde , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Alta do PacienteRESUMO
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.
Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Cuidadores , Estresse Financeiro , Assistentes Sociais , Grupos Focais , Neoplasias/terapiaRESUMO
INTRODUCTION: Research has shown that electronic platforms can assist data capture of patient-reported outcome measures (PROMs) to guide clinical care. In comparison, routine collection of carer-reported outcome measures (CROMs) to support the patient-carer dyad during cancer treatment has had limited attention. The current study utilised a novel electronic CROM (eCROM) system, ScreenIT Carer, to monitor the prevalence and nature of distress in carers of patients undergoing (chemo)radiotherapy ((C)RT) for head/neck cancer (HNC), and explore factors associated with carer distress. METHODS: Carers completed ScreenIT Carer weekly when attending patients' (C)RT treatment sessions from planning to 2 weeks post-treatment. ScreenIT Carer included the Distress Thermometer (DT) and Problem List, and a purpose-built Mealtime-Specific DT and Problem list. Data were first examined descriptively, then associations between demographic/treatment-related factors and distress severity were analysed using mixed-effects general linear modelling. RESULTS: 135 carers provided 434 ScreenIT Carer entries during the study period (mean entries = three/carer; yielding average adherence rate of 41% (range 11-100%)). A high prevalence of general (59%) and mealtime-specific distress (46%) was reported by carers. Nature of distress was multifactorial, with emotional problems and the patients' physical condition/symptoms common contributing factors. Based on multivariate analysis, tumour site, geographical location of residence and time during (C)RT when ScreenIT Carer was completed were significant predictors of carer distress severity. CONCLUSIONS: Carer distress is prevalent and multifactorial during (C)RT. This study highlights the feasibility of utilising eCROM platforms such as ScreenIT Carer, to monitor carer wellbeing and guide supportive care services as part of a holistic care pathway.
Assuntos
Cuidadores , Neoplasias de Cabeça e Pescoço , Eletrônica , Neoplasias de Cabeça e Pescoço/radioterapia , Humanos , Estudos ProspectivosRESUMO
BACKGROUND: Speech pathology (SP) services provide swallowing and communication intervention to people with head and neck cancer (HNC) across the continuum of care. However, difficulties exist with access and delivery of services in rural areas. The study aim was to identify actionable goals for SP change, utilizing a concept mapping approach. METHODS: Eleven SP staff from two regional/remote services completed the concept mapping process. Multivariate analysis and multidimensional scaling were used to develop a final set of prioritized goals for change. RESULTS: Between the two participating health services, 30 actionable goals were identified within the "green-zone" on the go-zone graph of importance and changeability. Among the most highly rated areas for change was the need to deliver and receive more support for training, mentoring, and supervision to consolidate skills. CONCLUSIONS: This methodology enabled identification of prioritized, actionable changes to improve SP services for people with HNC living in regional/remote areas.
Assuntos
Neoplasias de Cabeça e Pescoço , Patologia da Fala e Linguagem , Deglutição , Neoplasias de Cabeça e Pescoço/terapia , Serviços de Saúde , HumanosRESUMO
Purpose: 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.Materials and Methods: 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.Results: 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.Conclusions: 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 REHABILITATIONAs a result of communication changes post-injury, individuals with cervical spinal cord injury experience several challenges across a variety of domains in daily lifeThe 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 planningThe 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.
Assuntos
Pessoas com Deficiência , Traumatismos da Medula Espinal , Comunicação , Avaliação da Deficiência , Humanos , Participação Social , Organização Mundial da SaúdeRESUMO
OBJECTIVES/HYPOTHESIS: 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. STUDY DESIGN: Outcomes research. METHODS: Mealtime issues reported by HNC survivors in prior research was synthesized and classified using the ICF framework to develop the content and structure of the Head and Neck Cancer Survivors' Assessment of Mealtimes (HNSAM). A total of 122 HNC survivors completed both HNSAM and M.D. Anderson Dysphagia Inventory (MDADI) to assess for concurrent validity, whereas 51% of participants completed a second HNSAM for test-retest reliability. RESULTS: The HNSAM scores were significantly correlated with the MDADI scores. Dysphagic participants (n = 45) had significantly higher HNSAM scores than the nondysphagic participants (n = 77). Principal component analysis revealed three factors that matched with the HNSAM subscales. Good internal consistency (Cronbach's α = 0.72-0.96) and test-retest reliability (intraclass correlation = 0.76-0.91) were found. Both dysphagic and nondysphagic participants reported difficulties with saliva-related issues and were not able to enjoy food/drinks that they previously enjoyed. CONCLUSIONS: HNC survivors experience mealtime changes after cancer treatment. These initial validity data support the potential for the HNSAM to help HNC survivors' identify changes to the mealtime experience. Validation of the English version of the tool is now required. LEVEL OF EVIDENCE: 2c Laryngoscope, 129:1572-1578, 2019.
Assuntos
Sobreviventes de Câncer/psicologia , Transtornos de Deglutição/psicologia , Neoplasias de Cabeça e Pescoço/psicologia , Refeições/psicologia , Inquéritos e Questionários/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/etiologia , Feminino , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Análise de Componente Principal , Psicometria , Reprodutibilidade dos TestesRESUMO
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.
Assuntos
Cuidadores/psicologia , Transtornos de Deglutição/reabilitação , Saúde da Família , Neoplasias de Cabeça e Pescoço/complicações , Idoso , Codificação Clínica , Avaliação da Deficiência , Gerenciamento Clínico , Feminino , Neoplasias de Cabeça e Pescoço/reabilitação , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Qualidade de VidaRESUMO
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.
Assuntos
Transtornos de Deglutição/terapia , Deglutição , Esôfago/fisiopatologia , Treinamento por Simulação , Patologia da Fala e Linguagem/educação , Ensino/métodos , Fatores Etários , Competência Clínica , Currículo , Transtornos de Deglutição/diagnóstico , Transtornos de Deglutição/fisiopatologia , Avaliação Educacional , Escolaridade , Métodos de Alimentação , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Lactente , Manequins , Apoio Nutricional , Exame Físico , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Inquéritos e Questionários , Traqueostomia/educação , Resultado do TratamentoRESUMO
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.
Assuntos
Cuidadores/psicologia , Quimiorradioterapia/efeitos adversos , Comunicação , Neoplasias de Cabeça e Pescoço/terapia , Transtornos da Audição/psicologia , Distúrbios da Fala/psicologia , Sobreviventes/psicologia , Distúrbios da Voz/psicologia , Atividades Cotidianas , Adaptação Psicológica , Adulto , Idoso , Efeitos Psicossociais da Doença , Feminino , Neoplasias de Cabeça e Pescoço/diagnóstico , Transtornos da Audição/diagnóstico , Transtornos da Audição/etiologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pessoas com Deficiência Auditiva/psicologia , Pesquisa Qualitativa , Qualidade de Vida , Distúrbios da Fala/diagnóstico , Distúrbios da Fala/etiologia , Resultado do Tratamento , Distúrbios da Voz/diagnóstico , Distúrbios da Voz/etiologiaRESUMO
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.