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

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

PURPOSE: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. METHODS: The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking. RESULTS: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%). CONCLUSIONS: People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families

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

Exploratory investigation of communication management in residential aged care: a comparison of staff knowledge, documentation, and observed resident-staff communication

There is a high prevalence of communication difficulty among older people living in residential-aged care. Such functional deficits can have a negative impact on resident quality of life, staff workplace satisfaction and the provision of quality care. Systematic research investigating the nature of communication management in residential-aged care and factors impacting optimal communication management is lacking.To use data triangulation across multiple sources to describe resident-staff communication and communication management in residential-aged care.Participants included a sample of 14 residents and 29 staff directly involved in communication interactions with residents. Data were obtained from: (1) resident file review (n = 14), (2) observation of resident-staff communication (n = 14), (3) resident surveys (n = 14) and (4) staff surveys (n = 29). Data from each source were examined separately then triangulated.All residents had limited opportunity for meaningful communication with staff. Documentation of residents' communication needs and strategies to facilitate resident-staff communication was insufficient to provide individualized recommendations. Although staff were observed to use various strategies to facilitate communication with residents, staff agreement about the applicability of these strategies to individual residents was inconsistent. Differences in resident-staff communication for residents who experience nil/mild versus moderate/severe communication difficulty were also found.Resident-staff communication and communication management in residential-aged care is limited in scope and challenged in meeting residents' individual communication needs. Improvements in both documentation and staff knowledge of residents' communication needs are necessary. Strategies to facilitate communication with individual residents must be tailored, evidence based, documented in care plans and delivered to staff through ongoing education. Increased involvement of specialist providers such as speech pathologists to support better communication management in residential-aged care may provide one way of facilitating such change

Using a family-centered care approach in audiologic rehabilitation for adults with hearing impairment

Hearing problems are the most common communication disability in older people. The wide-ranging impact of hearing impairment means that not only does the person with hearing impairment experience the consequences, but also his or her family members. This impact on family members is referred to as a “third-party disability” (World Health Organization, 2001). Health professionals and researchers worldwide suggest that professionals can increase effectiveness of health care if they take into account the needs of the person with hearing impairment and the needs of family members (Dunst, 2002). This article discusses the important role of family-centered care in audiologic rehabilitation for adults with hearing impairment. Strategies for increased inclusion of family members in the rehabilitation process are proposed, with concepts from the field of psychology applied to audiologic rehabilitation

Negazione dei diritti civili, deportazione ed esilio negli scritti e nei discorsi pubblici di Emma Goldman (1917-1934)

Family members are significantly affected by the consequences of hearing impairment and can potentially play an important role in a client’s hearing rehabilitation. This paper uses two types of interaction analysis (Roter Interaction Analysis System (RIAS) and Conversation Analysis (CA)) to examine family member participation in a corpus of 17 video-recorded initial audiology appointments. RIAS results demonstrated that family members’ primary active communication role in consultations involved information provision. The CA findings supported this, and additionally identified that when family members provided additional information,it was often in disaffiliation with clients’ descriptions. In particular, disaffiliation arose concerning the extent of the client’s hearing difficulties and the client’s hearing rehabilitation needs. These ‘disagreements’ between clients and family members are analysed in detail, including how they were typically responded to by the audiologist. The implications of these disagreements are discussed in relation to family-centred care and effective rehabilitation in audiology

Cooperative Markets for Ideas: When does Technology Licensing Combine with R&D Partnerships?

The study departs from the traditional view of licensing as a spot market transaction and investigates license integration with R&D partnerships, introducing the concept of licensing combination. Drawing on licensing and R&D partnership literature and adopting the “transactional value” approach, we propose two types of antecedents – knowledge and dyad features – to investigate licensing combination. Using a dataset combining 441 original license agreements with firms’ patenting and market activity in the global biopharmaceutical industry, we find a substantial heterogeneity in the ways licensors and licensees jointly exploit markets for knowledge. The research highlights the specific role played by R&D collaboration and minority equity in inter-organizational exchange through licensing. Results show that licensing combination with R&D collaboration is likely when the licensed innovation is embryonic, the licensee is unfamiliar with the licensor’s technology and partners have different technological backgrounds. Instead, licensing of highly specific knowledge is likely to be supported by minority equity participation on the part of the licensee. Finally, licensing is combined with both forms of partnership in case of competence distance between partners. In the light of the empirical results, four types of licensing combination are proposed for future researc