Factors Influencing Caregiver Decision Making to Change the Communication Method of their Child with Hearing Loss.

The communication journey of a child with hearing loss is often a complex, interwoven process in which the child's use of language or method of communication may change numerous times. As there has been limited research exploring the caregiver decision making process behind making such changes, this qualitative descriptive study aimed to explore the factors which influence the caregiver decision making process to change the communication method of their child with hearing loss. Individual semi-structured in-depth interviews were conducted with seven caregivers of children with hearing loss in Australia. Thematic analysis revealed five key themes which influenced caregiver decisions regarding changes to their child's method of communication, including: (1) family characteristics; (2) family access to information; (3) family strengths; (4) family beliefs; and (5) family-centered practice. The overall finding that the family unit is at the core of decision-making has important clinical implications regarding early intervention professionals' provision of family-centered services when working with the families of children with hearing loss.

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

BACKGROUND: 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. AIMS: To use data triangulation across multiple sources to describe resident-staff communication and communication management in residential-aged care. METHODS & PROCEDURES: 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. OUTCOMES & RESULTS: 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. CONCLUSIONS & IMPLICATIONS: 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.

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.

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.

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.

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

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.

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.

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.