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This study explored how people thought and talked about death/dying during the first wave of the COVID-19 pandemic. The findings presented here are based on data collected for a larger study exploring the processes undertaken that allow individuals to actively think and openly talk about death and dying. Ten of the eleven interviews conducted during the pandemic mentioned COVID-19. These were subjected to thematic analysis, which identified two main themes: 'Becoming more thoughtful and open about death' and 'Anxieties around death and COVID-19'. The findings suggest that COVID-19 has prompted some people to think about and become more open to talk about death and dying. [ABSTRACT FROM AUTHOR]

Spontaneous imaginary companion (SIC) creation in childhood is a typical imaginative play behaviour associated with advanced sociocognitive skills; however, the direction of causality has not been established. To investigate this experimentally, researchers must determine whether children can create, on request, qualitatively equivalent imaginary companions (ICs) to those created spontaneously. We examined whether children could create ICs, and how these compared to SICs. Nine elementary school children were encouraged to create ICs in a 3‐month intervention. Accounts of elicited ICs were compared with an age‐matched sample of interviewees with SICs. Seven children maintained ICs for 6 months post intervention. Template analysis of IC interviews found four themes: Realistic Play, Multifaceted IC Mind, Utility of the IC, and Elicited IC Across Time. Analysis suggests elicited and SICs were similar in nature and utility, although intervention ICs tended to have animal rather than human appearances. Findings support the argument that children can be encouraged to create ICs similar to SICs. [ABSTRACT FROM AUTHOR]

This article examines how client expectations about psychological therapy compare with subjective experiences of undertaking therapy. We interviewed 10 clients who had recently completed therapy about their expectations and experiences, and thematically analysed data in the template style. Three themes are presented ([1]"I didn't know what I was capable of"; [2] "It's 50% me, 50% her"; [3] "You take your stabilisers off and off you go") which describe the experience of psychological therapy from the client perspective, and highlight how expectations compared to experiences of therapy, and changed over time. Findings could inform the development of materials to ensure those referred to therapy are well informed and prepared for therapy, potentially promoting improved client experiences and therapy engagement. [ABSTRACT FROM AUTHOR]

Temporality, occupation, and relationships are identified as discrete factors that impact quality of life for individuals at the end of life and those around them. However, scholars, practitioners, and educators require insights regarding whether and how interactions between these factors shape this quality of life. This study is framed by an understanding that meaning is negotiated between people through social interaction and occupational engagement in temporal contexts. We conducted in-depth interviews with 9 patients and 10 family members, incorporating the Pictor visual elicitation technique. Analysis was conducted through an iterative process involving open and selective coding. Findings are described as three main processes: (a) experiences of temporal rupture, (b) diminished significance of clock time, and (c) shifts in occupational priorities. Participants' perspectives may help carers understand how to foster positive temporal experiences and quality of life for patients and those who love them. [ABSTRACT FROM AUTHOR]

Context: Empathic physician behaviour is associated with improved patient outcomes. One way to demonstrate empathy is through the use of non‐verbal communication (NVC) including touch. To date, research on NVC, and specifically touch, has been relatively limited in medicine, which is surprising given the central role it plays in conveying affective and empathic messages. To inform curriculum development on NVC, this study aimed to examine physicians' experiences of communicating by touch. Methods: We conducted an interpretative phenomenological study. A total of 15 physicians (seven women and eight men) from different specialties, including both recent graduates and experienced doctors, described in detail specific instances of touch drawn from their clinical practices. Interview prompts encouraged participants to recall exact details such as the context, their relationship with the patient they touched and their physical experience of touching. Interviews (45‐100 minutes) were analysed with template analysis, followed by a process of dialectic questioning, moving back and forth between the data and researchers' personal reflections on them, drawing on phenomenological literature to synthesise a final interpretation. Results: Participants described two dimensions of the experience of touch: 'choosing and inviting touch' and 'expressing empathy.' Touch was a personal and fragile process. Participants interpreted non‐verbal patient cues in order to determine whether or not touch was appropriate. They interpreted facial expressions and body language in the present to make meaning of patients' experiences. They used touch to share emotions, and to demonstrate empathy and presence. Participants' experiences of touch framed it as a form of embodied empathic communication. Conclusions: Touch is a powerful form of NVC that can establish human connection. Phenomenological accounts of empathy, which emphasise its embodied intersubjective nature, can be used to theoretically enrich pedagogical approaches to touch in medical education and to deepen our understanding of empathy. If a picture is worth a thousand words, what value hath a touch? The authors of this study describe how doctors communicate empathy through touch, raising awareness of why non‐verbal communication skill should be incorporated into communication skills training. [ABSTRACT FROM AUTHOR]

This paper discusses our use of a hermeneutic phenomenological methodology to explore the lived experience of feeling joyful. Semi-structured interviews were used to discuss two contrasting experiences of joy for each participant. Analysis was informed by van Manen's human science method, facilitated by King's template analysis. Our findings suggest that joy was a profoundly meaningful sense of positivity. Sometimes this feeling was fleeting, at other times it was described as a longer lasting experience. Regardless of duration, joy involved a desire to relinquish control which could be expressed as a freedom of movement, and could be enabled by the security that significant others provided. We discuss our findings in relation to distinctions previously drawn in the literature between happiness and joy and argue that, despite differences in experiences, the participants' accounts support an understanding of joy as a meaningful and social phenomenon which, though often unexpected, requires intentional engagement. [ABSTRACT FROM AUTHOR]

The use of diagrams to stimulate dialogue in research interviews, a technique known as graphic elicitation, has burgeoned since the year 2000. Reviews of the graphic elicitation literature have relied on the inconsistent terminology currently used to index visual methods, and have so far drawn only a partial picture of their use. Individual diagrams are seen as stand-alone tools, often linked to particular disciplines, rather than as images created from a toolbox of common elements which can be customized to suit a research study. There is a need to examine participant-led diagramming with a view to matching the common elements of diagrams with the objectives of a research project. This article aims to provide an overview of diagramming techniques used in qualitative data collection with individual participants, to relate the features of diagrams to the aspects of the social world they represent, and to suggest how to choose a technique to suit a research question. [ABSTRACT FROM AUTHOR]

Purpose: Knowledge on the meaning of quality of life in individuals with spinal cord injury in developing countries is limited. This study aims to explore the meaning and components of quality of life for individuals with spinal cord injury in a rural area in Indonesia. Method: Data were obtained through semi-structured interviews with 12 individuals with paraplegia (8 males, 4 females) aged 24-67 years. Thematic analysis was used to identify themes that constitute meaning and components of quality of life. Results: Quality of life was not an easily understood concept, while "life satisfaction" and "happiness" were. Life satisfaction was associated with a person's feeling when achieving goals or dreams and related to fulfillment of needs. Thirteen components of life satisfaction were identified and categorized into five domains as follows: (1) participation: earning income and work, being useful to others, community participation, and having skills and knowledge, (2) social support: social support, social relationship, (3) relationship with God: injury is God's will, praying, (4) independence: being independent, mobility and accessibility, and health, and (5) psychological resources: accepting the condition, maintaining goals and motivation. Conclusions: Social, cultural and religious influences were prominent in the perception of life satisfaction. The measurement of quality of life for individuals with spinal cord injury in Indonesia needs to consider locally perceived meaning and components of quality of life. [ABSTRACT FROM AUTHOR]

We report on a research study in which we introduced undergraduate social work students in England to two methods originating in Personal Construct Theory (PCT) as a way of encouraging in-depth self-reflection. The methods were first piloted with four students and subsequently used with two large classes of second-year students. The students often found the methods challenging, but many felt that these enabled them to reflect upon social work practice and upon their own assumptions, values and behaviour in a fresh and thought-provoking way. We argue that such methods could usefully be added to existing methods for encouraging reflexivity in social work students. Teaching materials and instructions for delivering our teaching sessions using these methods are available online. [ABSTRACT FROM AUTHOR]

Aim: To explore the role and identify key responsibilities of the Tissue Viability Nurse (TVN) in the UK. Methods: Mixed methodology using questionnaires distributed via SurveyMonkey and semi-structured interviews. Results: 261 respondents completed the online questionnaire and seven participated in semi-structured interviews. Of the 261 respondents to the questionnaire, 63.7% were employed as TVNs. Almost all respondents claimed to have access to a tissue viability service and the mean TVN team size was 4.7. Some 81.9% of respondents stated they had a team vision, with 75.9% stating that their service had set criteria for referrals. Analysis showed a statistical significance (Χ²(1)=16.6; p<0.001) between TVNs' and non-TVNs' knowledge of the referral criteria, with the latter being more aware. There was a variety of other titles used for the role, with interviewees affirming this was poorly understood by patients. The results of this study identified that there is no national job title for Discussion: the TVN role. Data identified that patients do not fully understand the title 'Tissue Viability Nurse'. The TVN role is complex and not just about the management of a wound. However, what is also clear from the analysis of the data is that there are no clear criteria, or educational level, for the role. Data also suggest that review of current service provision, including partnership working with the multidisciplinary team and industry, is required to develop national competencies, guidance and quality assurance measures. [ABSTRACT FROM AUTHOR]

The community matron (CM) is often the key worker caring for patients with chronic, life-limiting, long-term conditions, but these patients are not always recognised as palliative cases. This study explored the experiences of CMs with regard to advance care planning (ACP) and ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) decision-making to understand whether or not they felt adequately prepared for this aspect of their role, and why. Qualitative data were generated from six CMs using a broad interpretive phenomenological approach. Face-to-face recorded interviews were analysed using template analysis. The study found that although participants faced complex ethical situations around ACP and DNACPR almost on a daily basis, none had received any formal training despite the emphasis on training in national and local guidelines. Participants often struggled to get their patients accepted on to the Gold Standards Framework. The research found variability and complexity of cases to be the main barriers to clear identification of the palliative phase. [ABSTRACT FROM AUTHOR]

BACKGROUND: Treatment expectations form a fundamental component of the self-regulatory model of health behavior, which defines such cognitions as illness perceptions. Unrealistic and/or unhelpful treatment expectations have been linked to detrimental clinical and work outcomes in those with persistent low back pain. However, research of this nature has rarely focused on the influence of 'significant others' (spouse/partner/close family member). OBJECTIVE: To provide an in-depth examination of the treatment expectations of the 'significant others' of individuals who have become unable to work due to persistent low back pain, highlighting how significant others may influence recovery and work participation outcomes for such individuals. PARTICIPANTS: A convenience sample (n=18) of work disability benefit claimants and their significant others were recruited from two settings in the North of England. METHOD: A qualitative research design was employed, and semi-structured interviews based on the chronic pain version of the Illness Perceptions Questionnaire-Revised were conducted with claimants and their significant others. Interview data were analysed using template analysis. RESULTS: It was found that significant others expected a substantial reduction or complete removal of pain in order for treatment to be considered successful. The pursuit of diagnostic tests was important in validating such expectations, and there was continued scepticism of treatments already undertaken or offered as an alternative. Like the individuals affected, significant others believed that a correct diagnosis had not yet been received, which led to a continued delay in return to work. CONCLUSIONS: This study demonstrates that significant others have similar unrealistic and/or unhelpful treatment expectations to those widely reported by individuals with persistent low back pain, and could further reinforce such illness perceptions and serve as wider psychosocial obstacles to recovery and continued work participation. [ABSTRACT FROM AUTHOR]

Background Pre-school children in families of recently settled refugees often have very high rates of early childhood caries (ECC). ECC is associated with a high level of morbidity and is largely preventable, however effective culturally appropriate models of care are lacking. This study aimed to provide a deeper understanding of the refugee experience related to early oral health by exploring pre-school refugee families (i) understanding of ECC and child oral health, (ii) experiences of accessing dental services and (iii) barriers and enablers for achieving improved oral health. The knowledge gained will be critical to the development of effective early oral health programs in refugee children. Methods Community based participatory qualitative methodology using focus groups of resettled refugee families and community refugee nurse interviews. A community reference group was established and a bi-lingual community research associate was employed. Transcripts were analysed for thematic content using NVivo software. Results There were 44 participants: eight focus groups (nine countries of origin) and five interviews. Emergent themes were (i) the major influence of parents' previous experience, including their beliefs about deciduous (baby) teeth, traditional feeding practices and poverty; and a consequent lack of understanding of the importance of early oral health and early dental caries, (ii) the burden of resettlement including prioritising, parenting, learning about new foods and how to assimilate into the community, and (iii) refugees' difficulties in accessing both information and dental services, and the role of schools in addressing these issues. An Opportunities for Change Model was proposed. Conclusions The main implication of the study is the demonstration of how enhanced understanding of the refugee experience can inform improvement in early oral prevention and treatment. The community participatory methodology of the study provided a basis for cross-cultural understanding and has already assisted in translating the findings and raising awareness in the provision of targeted refugee oral health services. [ABSTRACT FROM AUTHOR]

Aims: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). Method: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. Findings: Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. Conclusions: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family 'team' arrangements. [ABSTRACT FROM AUTHOR]

Objectives: Social isolation and stigma are frequently reported by patients with chronic fatigue syndrome/myalgic encephalomyelitis and relationships in the home environment with those close to the patients (their ‘significant others’) may thus be particularly important. Rather little attention has yet been paid to the beliefs and experiences of ‘significant others’ themselves in this context. This study sought to explore in-depth the beliefs and experiences of both patients and ‘significant others’ in relation to chronic fatigue syndrome/myalgic encephalomyelitis. Methods: In-depth interviews using a semi-structured interview schedule designed around the core constructs of the Common-Sense Model of self-regulation were conducted with two patients with chronic fatigue syndrome/myalgic encephalomyelitis and their spouses. Interpretative Phenomenological Analysis was used to analyse interview data. Results: Experiences of social interactions in relation to chronic fatigue syndrome/myalgic encephalomyelitis with others outside of the relationship dyad emerged as a key issue for all participants when reflecting on their experiences of living with the condition. These concerns are presented under two themes: interactions with healthcare professionals and interactions with the social world. Conclusions: It is evident that significant others play an important role in the lived experience of chronic fatigue syndrome/myalgic encephalomyelitis. For both patients and significant others, the wider social world and interactions with outside others may be important influences on dyadic coping in chronic fatigue syndrome/myalgic encephalomyelitis. Both future research and treatment interventions could usefully include a ‘significant other’ perspective. [ABSTRACT FROM AUTHOR]

ABSTRACT Social capital has been widely advocated as a way of understanding and building community participation in the interest of health improvement. However, the concept as proposed by Putnam, has been criticised for presenting an overly romanticised account of complex community relations. This paper presents analysis from a qualitative evaluation of a Healthy Living Centre (HLC) in the North of England, to examine the utility of the concept of social capital in this context. We found the concepts of 'bridging' and 'bonding' social capital were useful - though not without limitations - in helping to make sense of the complexities and contradictions in participants' experiences of community group participation. 'Bridging' helped provide an understanding of how the decline in shared social spaces such as local shops impacts on social relationships. 'Bonding' highlighted how community group membership can have positive and negative implications for individuals and the wider community. It was found that skilled group leadership was key to strengthening bridging capital. Politically, in the UK, community participation is seen as having an essential role in social change, for example, its centrality to the coalition government's idea of the 'Big Society'. A micro-examination of this HLC using the lens of social capital provides a valuable critical insight into community participation. It shows that this kind of initiative can be successful in building social capital, given conditions such as an appropriate setting and effective leadership. However, they cannot substitute for other kinds of investment in the physical infrastructure of a community. Copyright © 2012 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Medical Education 2012: 46: 963-973 Context It is important to know how patients are affected by becoming opportunistically involved in medical student education. In previous studies, researchers rather than patients set the research agenda and expert patients or people well known to teachers were more often involved than ordinary people. Objectives This study aimed to explore how ordinary patients experience undergraduate medical teaching when they become involved in it opportunistically and to derive practical insights from the lived experiences of these patients. Methods The research was conducted in line with a conceptual orientation towards communities of practice theory and used phenomenology as a way of exploring patients' lived experiences in depth. Minimally structured interviews were carried out with 10 patients following ordinary out-patient or general practice appointments in which students were being taught. Template analysis was used to generate provisional themes and a process of phenomenological reduction was used to distil individual respondents' lived experiences to their essence. Results The presence of students in ambulatory consultations was normal. Nine respondents described transactional relationships in which they remained outside the community of practice of which the doctor and student were members. Only an intimate problem would engage them deeply enough for a student's presence to 'bother' them. One patient's personal and professional background led her to regard doctors' handling of consultation dynamics as factors contributing to whether teaching consultations were negative or positive experiences. When doctors' sensitive and inclusive behaviour drew her into a triadic relationship with the student and doctor, she experienced mutual benefits with students. When it did not, she felt objectified and alienated. Conclusions Provided they receive the clinical care for which they are attending a consultation and are treated respectfully, patients may sometimes willingly become 'objects' from which students learn. They may, however, become more deeply engaged in teaching consultations in which they participate actively in a triadic relationship of mutual benefit with a doctor and student. Teaching consultations call for doctors to be sensitive and adaptable. [ABSTRACT FROM AUTHOR]

Aim: To outline some of the challenges facing people affected by advanced disease who want to participate in research interviews, and to present Pictor, a method that can help manage some of these challenges. Background: Patients and lay-carers may have many issues that affect their ability to participate in qualitative research interviews. These issues can include the physical effects of disease, its treatments and emotional distress. Data source: An ongoing study exploring experiences of advanced disease when multiple agencies are involved. Review methods: The Pictor technique involves the creation of a chart that supports the exploration of the participant's experience of roles and relationships. The technique has previously been used with health professionals and this paper reports on its use with lay-participants. Discussion: The technique accommodates some disease-related difficulties which helped people with advanced disease to reflect on their experiences of primary care service provision. Participants then communicated these experiences with the researcher. Conclusion: Pictor is a tool that can help manage some of the difficulties experienced by people with advanced disease who are participating in research interviews. This has benefits for researchers and participants INSET: Pictor technique: challenges. [ABSTRACT FROM AUTHOR]

Traditionally, psychologists have researched bondage and discipline, dominance and submission, and sadism and masochism (BDSM) and its participants from an external perspective, seeing it as pathology. However, there is now a growing body of research aiming to challenge this perspective. This article examines some of the ways BDSM has been reconceptualised by researchers who reject the pathological focus, distinguishing between transgressive and coercive sexualities. We focus on the lived experience of BDSM participation to further illuminate these sexual practices. A descriptive phenomenological analysis of four interview transcripts was employed, with the purpose of producing a general structural experience of BDSM participation, which aims to further understanding of this complex phenomenon. The essential structures of the BDSM experience are discussed in terms of authentic fantasy, rejection of social norms and non-sexual positive outcomes. [ABSTRACT FROM AUTHOR]