Search

This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM). A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC. From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context. The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication. Patient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation. It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC). This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC. The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies. [ABSTRACT FROM AUTHOR]

Aim: To assess the knowledge, attitudes and practices of Registered Nurses working in residential aged care facilities pertaining to pain management for residents living with dementia. Background: Sub-optimal pain management continues for people living with dementia in residential aged care. Registered Nurses are the pivotal staff responsible for complex assessment and management of people residing in residential aged care facilities. Design and methods: :This integrative literature review was informed by Whittemore (2005). Searching and screening followed the PRISMA guidelines. Results: Thirteen papers were identified, the major themes identified were gaps in knowledge and skills, uncertainty of assessment, and delays in treatment. Conclusion: Registered Nurses require education on pain management for people living with dementia in residential aged care. Broader issues in residential aged care contribute to the problem and require examination. Research pertaining to Registered Nurses' roles pain management for residents living with dementia is required. [ABSTRACT FROM AUTHOR]

Livestreaming and filming death rites and funeral ceremonies to enable remote engagement proliferated rapidly during the COVID-19 pandemic, and many expect these options to remain prevalent going forward. This paper draws on interviews with a diverse UK sample of 68 bereaved people, funeral directors, officiants and celebrants. It illustrates how, and explains why, people's experiences and evaluations of hybrid funerals can vary. In a context when in-person gatherings were limited, hybridisation played a valuable role in enabling more people to engage with funerals. However, virtual attendance was often considered less satisfying than in-person attendance because it did not enable people to participate well in the funeral activities that mattered to them or to participate with others as they would in person. Scope for participation was partly contingent on the functionality and use made of technology, including whether and which steps were taken to facilitate engagement and a sense of connection for those joining online. People's evaluations of hybrid funerals could also reflect their relationships to the deceased and their frames of reference – for example, whether they were comparing virtual attendance to attending in person, or to being unable to attend at all, or to an overwhelmingly large funeral. [ABSTRACT FROM AUTHOR]

We report on a qualitative Group Survey study involving four healthcare professionals (HCPs) and eight people living with HIV who were recipients of care in the United Kingdom (UK). The survey aimed to bring participants' perspectives into dialogue and establish consensus about how communication between HCPs delivering HIV care and their patients could be improved in the context of the routine care consultation. Responses from both parties were anonymously collated, thematically analysed, and shared back with participants in two subsequent survey rounds to support consensus-building on matters of concern and identify thematic insights. In this paper, we report three themes for informing future designs of tools and services to support communication between patients and HCPs: Patient-clinician relationship for trusted sharing; Self-reporting psychosocial information to support Whole-person care; and Perceived barriers for online trusted sharing with HCPs. Our findings highlight key areas of concern and further investigation is needed to understand how self-reported information may be meaningfully captured, interpreted and processed by HCPs in ways that are trusted by patients who voice privacy and security concerns. [ABSTRACT FROM AUTHOR]

Parent and therapist engagement and partnership are critical in early intervention physiotherapy and occupational therapy for infants with cerebral palsy to improve outcomes. The main aim of this study was to understand how parents perceive their engagement experience in early intervention over time. Grounded theory methodology was used. Twenty parents of diverse backgrounds participated in 22 interviews (including some repeated longitudinally) to reflect on their engagement experience within the context of early intervention community services provided in the UK NHS. The findings highlight how parents' perspectives of their engagement in EI change according to critical circumstances, including their preceding neonatal trauma, the at-risk CP label, firmer diagnosis of CP and their child's response to intervention. We theorise that this disrupted transition experience to parenthood becomes part of parental framing (or sense-making) of their engagement in EI. Overlapping frames of uncertainty, pursuit and transformation capture and explain nuances in parents' engagement patterns within EI over time. This theorising has implications for early intervention therapists in how they engage in the lives of families and partner with parents to support healthier parental transition, wellbeing and subsequent improved infant outcomes. New insights are provided into how recent advances to prognostic practices for infants with cerebral palsy affect parental perspectives and their engagement experience in early intervention The paper's organising concepts support a clearer understanding for early intervention practitioners of this complex parent experience Early intervention practitioners are encouraged to reflect upon their practice as they engage in families' lives and partner with parents during this challenging period to optimise outcomes [ABSTRACT FROM AUTHOR]

In 2023, the UK Government published its long-awaited reform strategy for England's children's social care system. Whilst the strategy set out planned reforms for several aspects of the wider system, an area requiring particular 'priority' was the purported workforce instability seen within child protection social work. However, the strategy has subsequently faced criticism on the basis that the suggested reforms were not satisfactorily informed by the testimonies of practicing social workers. This paper draws from a mixed-method study to report on the lived experiences of a sample of 201 child protection social workers practicing across England, in the context of better understanding the factors which they believed were impacting on workforce stability within England's child protection system. Implications that emerge are the need for an increase in the monetary commitment offered by the UK Government (especially in the context of tackling high caseloads, and improving local authority pay scales to reduce the allure of agency work); a targeted emphasis on challenging local cultures preoccupied with evidencing compliance over time spent with children; and the Government taking a more assertive role in tackling the often-counterproductive commentary perpetuated by politicians and media. [ABSTRACT FROM AUTHOR]

Alcohol marketing influences drinking practices, and this helps shape how gender identities are constructed. This paper presents research exploring how women who are sober manage and negotiate their non-drinking and sober identities in neo-liberal contexts that market alcohol products and consumption as a defining feature of feminine identities. Semi-structured in-depth interviews (n = 15) and online content produced by sober women active in the positive sobriety community on the social media platform Instagram were analysed using thematic analysis. Women negotiated marketing messages within their everyday experiences of sobriety, with associations between drinking and motherhood, female friendship and empowerment, discussed as impacting their drinking, lived experience and sense of self. They negotiated such messages, and created alternative ways of 'doing femininity' as sober women, through distancing themselves from their previous drinking identities; rejecting, reworking and countering marketing that links alcohol use to femininity; and alternative consumption practices. Instagram allowed women to publicly critique and counter marketing messages in ways that unlinked alcohol use, but not consumption more generally, from femininity, in traditional and news ways. Marketing regulation should consider how those experiencing problematic alcohol use may be particularly vulnerable to marketing messages, in ways that are gendered. [ABSTRACT FROM AUTHOR]

Talking about death and dying is promoted in UK health policy and practice, from a perception that to do so encourages people to plan for their end of life and so increase their likelihood of experiencing a good death. This encouragement occurs alongside a belief that members of the public are reluctant to talk about death, although surveys suggest this is not the case. This paper describes findings from a research study in which people participated in deliberative discussion groups during which they talked about a range of topics related to death, including talking about death, the good death, choice and planning and compassionate communities. Here we report what they had to say in relation to talking about death and dying. We identified three themes: 1. The difference between talking about death as an abstract concept and confronting the certainty of death, 2. how death and dying presents issues for planning and responsibility, and 3. approaches to normalising death within society. For our participants, planning was considered most appropriate in relation to wills and funerals, while dying was considered too unpredictable to be easy to plan for; they had complex ideas about the value of talking about death and dying. [ABSTRACT FROM AUTHOR]

Moral thinking and communication are critical competencies for confronting social dilemmas in a challenging world. We examined these moral competencies in 70 college students and graduates from Taiwan, the United Kingdom, and the United States. Participants were assessed through semi-structured written interviews, Facebook group discussions, and a questionnaire. In this paper, we describe the similarities and differences across cultural groupings in (1) the social issues of greatest importance to the participants; (2) the factors influencing their approaches to thinking about social issues and communicating with others; and (3) the characteristics of their moral functioning in terms of moral awareness, moral judgment, moral discourse, and moral decision-making. [ABSTRACT FROM AUTHOR]

The Research Excellence Framework (REF) follows a set of submission rules. Here we analyse whether the submission rules of the impact element arguably shaped the submission sizes of the submitting units – a group of academics researching on a specific subject area in higher education providers – to the REF in 2014. The number of impact case studies required was determined by the number of full-time equivalent (FTE) staff members submitted by the unit. We argue that units that did not have an extra impact case study or units' perception of lower quality of additional impact case study made some units to lower their submission sizes. We show that there were proportionately more submissions with a size just below the threshold FTE – a threshold used to identify the numbers of impact case studies – than those just above the threshold, suggesting that some units arguably decreased their size to return fewer impact studies. [ABSTRACT FROM AUTHOR]