“When that understanding is there, you work much better together”: the role of family in audiological rehabilitation for older adults

OBJECTIVE: This study aimed to explore the experiences and perceptions of adults with hearing impairment and family members regarding the role of family in audiological rehabilitation. DESIGN: A qualitative descriptive methodology was used. STUDY SAMPLE: A total of 37 people participated, 24 older adults with hearing impairment and 13 family members (11 spouses and 2 adult children). Four focus group interviews were conducted with the adults with hearing impairment, and 3 with family members. RESULTS: Five key themes emerged from analysis of the transcripts: (1) knowledge and understanding of hearing impairment and treatment; (2) the role of family members in rehabilitation is complex and multifaceted; (3) audiologists have an influential role in facilitating family member involvement; (4) the role of communication in rehabilitation; and (5) outcomes of family member involvement. Importantly, although perceptions were generally very positive, there was some uncertainty about the role of family. CONCLUSIONS: Audiologists have a key role in facilitating family involvement in audiological rehabilitation that is identified by adults with hearing impairment and their families. Although participants reported limited involvement in audiological rehabilitation currently, they identified potential for involvement in areas such as goal setting and decision-making

Exploring the complexity of how families are engaged in early speech-language pathology intervention using video-reflexive ethnography

BACKGROUND: Despite being an important aspect of effective early intervention service delivery, ‘engagement’ has been inconsistently defined in paediatric healthcare. Previous research has identified that engagement in early speech–language pathology intervention is complex and multifaceted. However, more research is needed to understand the ways that different families may engage with intervention in different settings. AIMS: To explore the complexity of engagement in early speech–language pathology intervention from the perspectives of both families and their speech–language pathologists (SLPs). METHOD AND PROCEDURES: Video‐reflexive ethnography was used to explore engagement with 21 matched SLP–family dyads in early intervention services. Up to three intervention appointments for each participating family were video recorded. Short video segments were selected and played to participants during individual semi‐structured interviews where participants were invited to reflect on the interactions captured (i.e., ‘video‐reflexive sessions’). Interview data were analysed using thematic analysis. OUTCOMES AND RESULTS: Results from the interview data were organized into one overarching theme ‘Families may have “different levels of engagement”’, and four individual themes that reflected how families engage differently in various aspects of intervention, including (1) attending sessions and coming into the room; (2) actively participating in sessions; (3) continuing to actively participate outside sessions; and (4) having open and honest communication with their SLPs. CONCLUSIONS AND IMPLICATIONS: Families may have different levels of engagement in various aspects of intervention, which contribute to their unique profile of engagement. Findings of this study prompt SLPs to move beyond using blanket statements about whether or not families are engaged, to instead describing in detail how families are uniquely engaged

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

Exploring factors influencing the use of an eHealth intervention for families of children with hearing loss: An application of the COM-B model

BACKGROUND: Prior to developing a successful eHealth intervention, it is important that we explore stakeholders’ capacity to adapt to eHealth. OBJECTIVE: To explore what factors influence the use eHealth services from the perspectives of families of children with hearing loss and professionals who support families as they transition into early intervention. METHODS: A qualitative study incorporating semi-structured in-depth interviews was conducted with families (n = 17) and professionals (n = 11). Interview topic guides were developed based on the COM-B model of behaviour change to explore barriers and facilitators related to capability, opportunity, and motivation. RESULTS: The COM-B model captured several factors that may influence the use eHealth interventions for families of children with hearing loss. The capability factors included computer literacy and familiarity with social media. The opportunity factors were access to online resources, reliable Internet, and affordable equipment. Professionals’ and families’ preferences and a culture of face-to-face services were also identified as barriers for using eHealth. The motivation factors included families’ and professionals’ confidence in using technology and beliefs that there were benefits (e.g., saving travel) associated with using eHealth services. In contrast, beliefs that eHealth may be difficult to set up and not able to replace in-person communication identified as barriers to families and professionals adopting eHealth interventions. CONCLUSION: Findings of this study indicated that implementation of an eHealth intervention could be facilitated by addressing the barriers in stakeholders’ capabilities, opportunities (e.g., equipment and social support), and motivation (e.g., negative beliefs about eHealth) before developing eHealth services

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

Attitudes towards Human Papillomavirus vaccination among African parents in a city in the north of England: A qualitative study.

Background: Human papillomavirus (HPV) is sexually transmitted and has been conclusively linked to cervical cancer and genital warts. Cervical cancer is attributed to approximately 1100 deaths annually in UK, and is the second most common female cancer globally. It has been suggested that black African women are more predisposed to HPV infection and cervical cancer. A vaccine has been developed to reduce HPV infection, and in the UK, has been offered to 12-13 year old adolescent girls through schools as part of their childhood immunization programme since 2008. Upon programme initiation, it was noted that vaccine uptake was lower in schools where girls from ethnic minority groups were proportionately higher. Objectives: The study’s objectives were to explore factors influencing UK based African parents’ acceptance or decline of the HPV vaccine, whether fathers and mothers share similar views pertaining to vaccination and any interfamily tensions resulting from differing views. Methodology: A qualitative study was conducted with five African couples residing in north England. Face to face semi-structured interviews were carried out. Participants were parents to at least one daughter aged between 8 and 14 years. Recruitment was done through purposive sampling using snowballing. Results: HPV and cervical cancer awareness was generally low, with awareness lower in fathers. HPV vaccination was generally unacceptable among the participants, with fear of promiscuity, infertility and concerns that it’s still a new vaccine with yet unknown side effects cited as reasons for vaccine decline. There was HPV risk denial 3 as religion and good cultural upbringing seemed to result in low risk perceptions, with HPV and cervical cancer generally perceived as a white person’s disease. Religious values and cultural norms influenced vaccine decision-making, with fathers acting as the ultimate decision makers. Current information about why the vaccine is necessary was generally misunderstood. Conclusion: Tailored information addressing religious and cultural concerns may improve vaccine acceptability in African parents

How Can eHealth Meet the Hearing and Communication Needs of Adults With Hearing Impairment and their Significant Others? A Group Concept Mapping Study

Objectives: To seek the perspectives of key stakeholders regarding: (1) how eHealth could help meet the hearing and communication needs of adults with hearing impairment and their significant others; and (2) how helpful each aspect of eHealth would be to key stakeholders personally. / Design: Group concept mapping, a mixed-methods participatory research method, was used to seek the perspectives of key stakeholders: adults with hearing impairment (n = 39), significant others (n = 28), and hearing care professionals (n = 56). All participants completed a short online survey before completing one or more of the following activities: brainstorming, sorting, and rating. Brainstorming required participants to generate ideas in response to the focus prompt, “One way I would like to use information and communication technologies to address the hearing and communication needs of adults with hearing loss and their family and friends is to….” The sorting task required participants to sort all statements into groups that made sense to them. Finally, the rating task required participants to rate each of the statements according to “How helpful would this idea be to you?” using a 5-point Likert scale. Hierarchical cluster analysis was applied to the “sorting” data to develop a cluster map using the Concept Systems software. The “rating” data were subsequently analyzed at a cluster level and an individual-item level using descriptive statistics. Differences in cluster ratings between stakeholder groups were examined using Kruskal-Wallis tests. / Results: Overall, 123 statements were generated by participants in response to the focus prompt and were included in subsequent analyses. Based on the “sorting” data and hierarchical cluster analysis, a seven-cluster map was deemed to be the best representation of the data. Three key themes emerged from the data, including using eHealth to (1) Educate and Involve Others; (2) Support Aural Rehabilitation; and (3) Educate About and Demonstrate the Impacts of Hearing Impairment and Benefits of Hearing Rehabilitation. Overall median rating scores for each cluster ranged from 3.97 (educate and involve significant others) to 3.44 (empower adults with hearing impairment to manage their hearing impairment from home). / Conclusions: These research findings demonstrate the broad range of clinical applications of eHealth that have the capacity to support the implementation of patient- and family-centered hearing care, with self-directed educational tools and resources typically being rated as most helpful. Therefore, eHealth appears to be a viable option for enabling a more biopsychosocial approach to hearing healthcare and educating and involving significant others in the hearing rehabilitation process without adding more pressure on clinical time. More research is needed to inform the subsequent development of eHealth interventions, and it is recommended that health behavior change theory be adhered to for such interventions

Analyzing the potential biological determinants of autism spectrum disorder: From neuroinflammation to the kynurenine pathway

Autism Spectrum Disorder (ASD) etiopathogenesis is still unclear and no effective preventive and treatment measures have been identified. Research has focused on the potential role of neuroinflammation and the Kynurenine pathway; here we review the nature of these interactions. Pre-natal or neonatal infections would induce microglial activation, with secondary consequences on behavior, cognition and neurotransmitter networks. Peripherally, higher levels of pro-inflammatory cytokines and anti-brain antibodies have been identified. Increased frequency of autoimmune diseases, allergies, and recurring infections have been demonstrated both in autistic patients and in their relatives. Genetic studies have also identified some important polymorphisms in chromosome loci related to the human leukocyte antigen (HLA) system. The persistence of immune-inflammatory deregulation would lead to mitochondrial dysfunction and oxidative stress, creating a self-sustaining cytotoxic loop. Chronic inflammation activates the Kynurenine pathway with an increase in neurotoxic metabolites and excitotoxicity, causing long-term changes in the glutamatergic system, trophic support and synaptic function. Furthermore, overactivation of the Kynurenine branch induces depletion of melatonin and serotonin, worsening ASD symptoms. Thus, in genetically predisposed subjects, aberrant neurodevelopment may derive from a complex interplay between inflammatory processes, mitochondrial dysfunction, oxidative stress and Kynurenine pathway overexpression. To validate this hypothesis a new translational research approach is necessary

“We don’t have up to date knowledge about the disease” Practical challenges encountered in the delivery of cervical cancer screening in Iraq

Objective: This qualitative study explored the lived experience of medical doctors in delivering cervical cancer screening in a city in Iraq. Methods: An applied grounded theory approach explored the reported experiences of doctors in the field. A purposive sample of 12 gynaecologists and one general practitioner (GP) working in two main hospitals participated: Semi-structured interviews took place from June to September 2015. Thematic coding of data was peer reviewed and included participant reading of transcripts and translations from Arabic to English. Theory generation involved synthesis of a prior literature review and interview findings. Results: Gynaecologist and GP experiences showed overwhelming gaps in cervical cancer experience and screening. Iraqi women mainly presented for help with late stage cancer. Practical barriers included cultural stigma, low priority for women’s health needs, lack of knowledgeable leadership and perceived shortage of adequately trained staff. Conclusion: There is an urgent need for culturally appropriate cervical cancer prevention policies and strategies in Iraq, focused on evidence-based population-based cervical screening to identify and prevent advanced cervical cancer among women. Regional educational initiatives should be encouraged and primary health care systems supported to undertake screening. Key words: Cervical cancer, Screening, Health system, Barriers, Iraq, Medical education