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Background: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual's ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people's expectations from AAC may change over time. Aims: To inform the development of a patient‐reported outcome measure for AAC by understanding more about people's expectations from AAC and how these change over time. Methods & Procedures: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south‐west of the UK. Four semi‐structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience. Outcomes & Results: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross‐case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people's hopes and expectations from AAC and how these change over time. Conclusions & Implications: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people's hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research. WHAT THIS PAPER ADDS: What is already known on this subject: We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient‐reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge: This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work?: This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people's experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across. [ABSTRACT FROM AUTHOR]

Patient-reported outcome measures (PROMs) play a central role in clinical research and patient care resulting in a plethora of standardized PROMs to measure a range of constructs, including disease symptoms, health-related quality of life, and health status (Meadows/Reaney) used in a range of settings, including the nursing environment. However, the use of PROMs in drug development and their use in healthcare evaluation do not easily marry together. In drug development, standardization of measurement is key to the interpretation of the formation at a population level with minimal biases. However, in health care, the individual patient perspective, priority, and needs should be taken into account whereas, in the clinical encounter, one has to also deal with what is particular and unique. The purpose of this paper is to describe the characteristics of the phenomenological method as a means within a mixed-method framework, to supplement participants' patient-reported outcome numeric scores with a more in-depth commentary on the essence of the lived health experiences. [ABSTRACT FROM AUTHOR]

Background: Eating disorders are as common in Māori, the Indigenous people of Aotearoa-New Zealand, as they are in non-Māori; however, research has focused on the experiences of non-Māori. This paper will describe explanatory factors, treatment experiences and what helps with recovery for Māori. Methods: Kaupapa Māori research methodology informed the methods and analysis. Fifteen semi-structured interviews comprised thirteen Māori participants with eating disorders (anorexia nervosa, bulimia nervosa and binge eating disorder) and two whānau (support network) members. A thematic analysis was undertaken by a first cycle of coding that used deductive structural coding to identify data describing participants' perceived causes of eating disorders, their experience of treatment and recovery. A second cycle of coding used inductive analysis with descriptive and pattern coding. Results: Three overarching themes were antecedents (cumulative exposure), treatment (a system of complexities) and recovery (resource empowerment). Antecedents comprised cumulative exposure to body and sporting ideals and adversity as causal factors of eating disorders. In the treatment theme, a system of complexities critiqued rural settings for generalised mental health services, allocation of Māori cultural support, the economic burden of treatment, culturally incongruent treatment (methods, values) and a weight-focused discharge criterion. Recovery (resource empowerment) found appropriate health information, self-determination and connection to Māori culture and whānau aspirations helped with recovery. Conclusion: The diversity of birdcalls reminds us of the individuality of eating disorders. Health practitioners are reminded that just as the Tūī, Kākā and Kererū possess their own unique birdcalls, so do Māori with eating disorders and their whānau have their own experiences, needs and required treatment responses. [ABSTRACT FROM AUTHOR]

The Covid-19 pandemic added to collective concerns, making health risks salient especially for the older population. The health emergency exacerbated an already widespread negative representation of aging, and phenomena such as ageism. With the present qualitative inquiry, 21 episodic interviews were collected with the aim of understanding the experience of older adults in residential care facilities, exploring their ideas of aging and the viewpoints that helped them to respond to the pandemic successfully. A thematic analysis was conducted using NudIst software. The results show that participants described multiple personal and relational resources they used to cope with the pandemic, and they were able to express counter-narratives to the ideas of aging as coinciding with decline, and of lockdown as a source of distress alone. The paper concludes with reflections on the relevance of research capable of challenging unhelpful dominant discourses and averting the risk of them turning into negative prophecies. [ABSTRACT FROM AUTHOR]

Background: Historically, researchers have been apt at conducting research on, rather than with, the people who are the focus of their efforts. Such approaches often fail to effectively support and benefit the populations they are intended to. This study aimed to explore the preferences of people with lived experience for engagement with research either as research participants within studies, or through active involvement in mental health research. Methods: Data for this paper were collected in three separate lived experience agenda‐setting studies conducted over a 9‐year period from 2013 to 2022; two group discussions and an open‐ended online survey. Data were combined and thematic analysis undertaken. Results: Participants described the inclusion of lived experience as a critical ingredient and the highest level of knowledge and expertise in mental health research that should lead to knowledge generation and research agendas. Participants discussed the importance and value of research that enables sharing experiences and stories, expressed a need for flexibility in research methods for choice and agency, and support for greater active involvement of people with lived experience across all stages of research. Participants also spoke to the need for perspective and knowledge generated from people with lived experience to have equal power in research, making space for lived experience voices across multiple aspects of research, and greater respect and recognition of the value of lived experience. Conclusion: Lived experience in mental health research is coming of age, but dedicated, cocreated development is needed to get it right. People with lived experience increasingly understand the value their experiential knowledge brings to the mental health research effort, and describe a wide range of ways that researchers can support them to be research participants, and to get actively involved. Power‐sharing, respect and recognition of lived experience as central to effective mental health research are the keys to 'keeping it real'. Patient or Public Contribution: People with lived experience of mental health problems or distress either personally, and/or as carers, family and kinship group members, were involved in the coideation and codesign of this research. All authors identify as people with lived experience. [ABSTRACT FROM AUTHOR]

Background: The global population is ageing rapidly and there is a need for strategies to promote health and wellbeing among older adults. Nutrition knowledge is a key predictor of dietary intake; therefore, effective educational programmes are urgently required to rectify poor dietary patterns. Digital health technologies provide a viable option for delivering nutrition education that is cost‐effective and widely accessible. However, few technologies have been developed to meet the unique needs and preferences of older adults. Objective: The aim of this study was to explore technology use among older adults and qualitatively determine the content needs and design preferences for an online nutrition education resource tailored to older adult consumers in Australia. Methods: Twenty adult participants aged 55 years and older (95% female) participated in one of four 2‐h participatory design workshops. In each workshop, prompted discussion questions were used to explore participants' technology use and preferences and to explore content needs and design preferences for an online nutrition education resource specific to older adults. Results: All participants were regularly using a range of different devices (e.g., smartphones, tablets and computers) and reported being comfortable doing so. Participants wanted a website that provided general nutrition information, practical advice and recipes. To enhance engagement, they sought a personalised resource that could be adjusted to suit their needs, included up‐to‐date information and allowed for easy sharing with others by exporting information as a PDF. Conclusions: Participatory design methods generate new knowledge for designing and tailoring digital health technologies to be appropriate and useful for the target audience. Specifically, older adults seek an online resource that has large and simple fonts with clear categories, providing them with practical advice and general nutrition information that can be personalised to suit their own needs and health concerns, with the option to export and print information into a paper‐based format. Patient or Public Contribution: Older adults actively participated in the development and evaluation process to generate ideas about potential features, functionalities, uses and practicalities of an online nutrition education resource. [ABSTRACT FROM AUTHOR]

Introduction: People who call emergency ambulances frequently are often vulnerable because of health and social circumstances, have unresolved problems or cannot access appropriate care. They have higher mortality rates. Case management by interdisciplinary teams can help reduce demand for emergency services and is available in some UK regions. We report results of interviews with people who use emergency ambulance services frequently to understand their experiences of calling and receiving treatment. Methods: We used a two‐stage recruitment process. A UK ambulance service identified six people who were known to them as frequently calling emergency services. Through third‐sector organisations, we also recruited nine individuals with healthcare experiences reflecting the characteristics of people who call frequently. We gained informed consent to record and transcribe all telephone interviews. We used thematic analysis to explore the results. Results: People said they make frequent calls to emergency ambulance services as a last resort when they perceive their care needs are urgent and other routes to help have failed. Those with the most complex health needs generally felt their immediate requirements were not resolved and underlying mental and physical problems led them to call again. A third of respondents were also attended to by police and were arrested for behaviour associated with their health needs. Those callers receiving case management did not know they were selected for this. Some respondents were concerned that case management could label frequent callers as troublemakers. Conclusion: People who make frequent calls to emergency ambulance services feel their health and care needs are urgent and ongoing. They cannot see alternative ways to receive help and resolve problems. Communication between health professionals and service users appears inadequate. More research is needed to understand service users' motivations and requirements to inform design and delivery of accessible and effective services. Patient or Public Contribution: People with relevant experience were involved in developing, undertaking and disseminating this research. Two public contributors helped design and deliver the study, including developing and analysing service user interviews and drafting this paper. Eight public members of a Lived Experience Advisory Panel contributed at key stages of study design, interpretation and dissemination. Two more public contributors were members of an independent Study Steering Committee. [ABSTRACT FROM AUTHOR]

Total knee arthroplasty (TKA) is a common surgical intervention for patients with advanced arthritis. The aim of this qualitative evidence synthesis was to systematically review the qualitative literature on patients' experiences following primary TKA. Four electronic databases (PubMed, CINAHL, Cochrane and Embase) were searched from inception until October 2021. Pairs of reviewers independently screened search results for eligibility, analysed the quality of included studies and extracted data. We undertook a thematic synthesis and used an interpretive approach to identify recurring themes and draw a conclusion. Data were synthesised using thematic analysis and an interpretive approach was used to identify themes. Twenty-three studies exploring patients' experiences following TKA were included. Five main themes emerged: (i) Experience of healthcare staff, (ii) Pain/Medications, (iii) Was it worth it? (iv) Social Support (v) Follow up. This review highlights the variability in patients' experiences following TKA. Whether this experience detailed their pain, function, or encounter with healthcare staff or systems, patients reported a variety of both positive and negative sentiments. Each theme invites attention to an area in which healthcare can improve to enhance patients' experiences. The importance of patient support, individualised rehabilitation and appropriate follow-up are highlighted. This paper reviews patients' experiences after undergoing total knee arthroplasty (TKA) Patients need individualised programmes, made collaboratively with health care professionals, to maximise outcomes and improve motivation. Improved interdisciplinary dialogue and a more holistic approach would increase patients' confidence in their care. Group-based communication classes may offer an improved method for patients to communicate their worries and learn from one another. [ABSTRACT FROM AUTHOR]