The role of hair loss in cancer identity: perceptions of chemotherapy-induced alopecia among women treated for early-stage breast cancer or ductal carcinoma in situ

Background: The trauma of chemotherapy-induced alopecia is well documented. However, less is known about how the stereotypical cancer identity affects social interactions. Objective: The aim of this study is to explore women's experiences of hair loss resulting from breast cancer treatment, from a sociological perspective. Methods: Twenty-four women who had been treated for early-stage breast cancer or ductal carcinoma in situ were interviewed. References to hair (loss) were isolated from their narratives. Results: Findings confirm previous research that hair loss can be traumatic. The stigma attached to both having a cancer patient identity and nonconformity with norms of appearance means that women must decide how much to reveal and to whom. An unexpected finding was that distressing experiences were reported by some women who had not lost their hair. Conclusions: Hair is important to identity; therefore, there are implications for social interactions whether women decide to disguise their hair loss or not. There may also be implications for women who do not lose their hair because they fail to conform to the stereotypical appearance of the bald cancer patient. Future research should consider the role of stereotypes in patient experiences. Implications for Practice: Nurses should provide sufficient information and support to prepare patients for the impact on self-perception and social interactions when facing hair loss. Also, patients should be forewarned about the possible implications of not conforming to the cancer stereotype. In addition, greater education among the wider population about the possible side effects of cancer treatments may prevent women feeling stigmatized while already undergoing a stressful experience

Reconsidering patient‐centred care: Authority, expertise and abandonment

Patient-centred care is commonly framed as a means to guard against the problem of medical paternalism, exemplified in historical attitudes of ‘doctor knows best’. In this sense, patient-centred care (PCC) is often regarded as a moral imperative. Reviews of its adoption in healthcare settings do not find any consistent improvement in health outcomes; however, these results are generally interpreted as pointing to the need for more or ‘better’ training for staff, rather than raising more fundamental questions. Patient autonomy is generally foregrounded in conceptualizations of PCC, to be actualized through the exercising of choice and control. But examining healthcare interaction in practice shows that when professionals attempt to enact these underpinnings, it often results in the sidelining of medical expertise that patients want or need. The outcome is that patients can feel abandoned to make decisions they feel unqualified to make, or even that care standards may not be met. This helps to explain why PCC has not produced the hoped-for improvement in health outcomes. It also suggests that, rather than focusing on scoring individual consultations, we need to consider how medical expertise can be rehabilitated for a 21st century public, and how patient expertise can be better incorporated into co-design and co-production of services and resources rather than being seen as something to be expressed through a binary notion of control. Patient and Public Contribution: This viewpoint draws on research conducted by the author across a range of settings in health and social care, all of which incorporated patient and public involvement when it was conducted

Imagined Constructed Thought:how staff interpret the behaviour of patients with intellectual disabilities.

This paper examines ‘imagined constructed thought’: speakers giving voice to the inner world of a non-present other. Drawing on 9 hours of video footage of health-care staff discussing patients with intellectual disabilities during Discovery Awareness sessions, we explored times when the staff presented a possible version of a patient's thoughts. They used those versions to take a stance on the patient’s inner world, often as a bridge between description of objectively observable phenomena and subjective interpretation of its meaning. It also projected staff's own stance on what the patient was thinking, both in first-position descriptions, and as a competitive resource in those given in second position. The findings suggest that presenting the patients' thoughts from a first-person perspective can be a versatile way of enacting a variety of complex epistemic and empathic actions in this setting. Data are in English

"Pharmacy counselling": a study of the pharmacist/patient encounter using conversation analysis

Pharmacy as a profession is changing rapidly in the UK. Over recent years, the increased utilization of ready-prepared drugs has led to a decline in the need for the traditional skills of formulation, while computerization has resulted in a situation where much of the routine dispensing work can be undertaken by less qualified personnel. The decline in the traditional aspects of pharmacy has been matched by the emergence of a much greater advisory role. Pharmacy practice researchers have been drawn to support these developments by investigating related areas, but the common factor linking this research is its focus on clinical as opposed to communication issues. Rather than investigating the nature of face-to-face interaction between pharmacists and clients as a topic in itself, researchers instead have been largely concerned with patient/health care system mteractions as a function of drug therapy. Those few studies that have focused exclusively on communication have done so from a quantitative, social psychology framework, thus ignoring the two way, reactive nature of the interaction process. This study, using data collected from patients' and carers' consultations with pharmacists in a hospital paediatric oncology outpatient clinic, uses the sociological methodology of Conversation Analysis (CA) in order to analyze the encounters which take place. In so doing, it aims to shed some light upon what is actually involved in the process of "patient counselling" in this setting. The body of CA literature which considers advice-giving in health care settings provides the starting point for a consideration of the ways in which pharmacists give advice in this setting, and how this is responded to. The aims are thus twofold: to enlarge the methodological resources of PPR, and also to begin an examination of the communicative competencies required of pharmacists in this setting. NB. This ethesis has been created by scanning the typescript original and may contain inaccuracies. In case of difficulty, please refer to the original text

Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana

Introduction: Effective transfer of research findings to key knowledge users, particularly in low- and middle-income countries, is not always achieved, despite being a shared priority among researchers, funders, healthcare and community stakeholders and decision-makers. A constructivist grounded theory study conducted in 2015–2019 in Ghana that explored sickle cell-related fatigue in adolescence resulted in numerous implications for practice and policy. Peer-reviewed funding was obtained to support disseminating these findings to relevant stakeholders. Methods: Key steps in implementing this study dissemination project included: (1) identifying and attracting target stakeholders from healthcare and community organizations; (2) tailoring tools for communication of research findings for the stakeholder groupsand (3) designing interactive workshops to facilitate knowledge sharing and uptake. Finding: Despite the COVID-19 pandemic, 50 healthcare and community stakeholders participated in the dissemination workshops. The dissemination activities contributed new layers of understanding to the original research findings through discussions. Through the workshops, participants identified culturally valuable and actionable recommendations that they could take forward to improve care and support for young people with sickle cell disease in Ghana. A follow-up 6 months post the workshops indicated some positive knowledge usage and benefits. Conclusion: This dissemination project provided a unique opportunity for researchers and stakeholders to share in the interpretation of research findings and to strategically plan recommendations to improve SCD-focused care and support for young people in Ghana. Further research dissemination should continue to be grounded in locally generated knowledge, include systematic, long-term evaluation of dissemination outcomesand be adequately financed. Patient and Public Contribution: Public involvement in this study was critical to the research dissemination project. The Sickle Cell Association of Ghana (Kumasi chapter) actively supported the project's development, organizationand facilitation. Parent members of the Association, the Association's executive members and volunteers, and the health professionals involved in sickle cell care at the Komfo Anokye Teaching Hospital participated in the project workshops. They contributed to the knowledge transfer and uptake

Biographical accounts of the impact of fatigue in young people with sickle cell disease

Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in-depth interviews with adolescents aged 12–17years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non-normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD

Participants' use of enacted scenes in research interviews: a method for reflexive analysis in health and social care

In our study of a workforce intervention within a health and social care context we found that participants who took part in longitudinal research interviews were commonly enacting scenes from their work during one-to-one interviews. Scenes were defined as portions of the interviews in which participants directly quoted the speech of at least two actors. Our analysis in this paper focuses on these enacted scenes, and compares the content of them before and after the intervention. We found that, whilst the tensions between consistency and change, and change management, were common topics for scene enactment in both pre and post-intervention data, following the intervention participants were much more likely to present themselves as active agents in that change. Post-intervention enacted scenes also showed participants' reports of taking a service user perspective, and a focus on their interactions with service users that had been absent from pre-intervention data. In addition, descriptions of positive feeling and emotions were present in the post-intervention enacted scenes. We suggest that this analysis confirms the importance of enacted scenes as an analytic resource, and that this importance goes beyond their utility in identifying the impact of this specific intervention. Given the congruence between the themes prominent in enacted scenes, and those which emerged from a more extensive qualitative analysis of these data, we argue that enacted scenes may also be of wider methodological importance. The possibility of using scene enactment as an approach to the validation of inductive analysis in health and social care settings could provide a useful methodological resource in settings where longitudinal ethnographic observation of frontline care staff is impossible or impractical

Talking about learning disability: Discursive acts in managing an ideological dilemma

Learning disability is a term that can mean different things to different people. It is also a term that has undergone much revision and critique, being linked to stigma and prejudice. Consequently, talking about learning disability can be a delicate matter. This paper analyses the discursive work done by focus group participants (professionals and lay people in supportive roles) to manage their talk about learning disability. We show how participants drew on six interpretive repertoires, organised as three binary pairs, to negotiate an ideological dilemma associated with stigma and the body. We argue that the participants drew on these repertoires to maintain a particular subject position, the ‘good person’ subject position, and performed what we call ‘passing off’ behaviour to manage their talk. We conclude that some aspects of learning disability remain ‘unspeakable’, and that this has consequences for the policies and practices which determine the support available to people with learning disabilities

Identifying coping strategies used by patients at a transgender health clinic through analysis of free text autobiographical narratives

BackgroundThis paper presents an analysis of 32 narratives written by patients waiting for assessment at a transgender health clinic (THC) in England. Narratives are autobiographical free texts, designed to allow patients to describe in their own words their experiences of their gender identity and/or transition prior to a clinic appointment, as part of the assessment process.ObjectiveNarratives were analysed to identify actions prospective patients had taken to manage their (usually lengthy) waiting times, so that these ‘coping strategies’ could be shared with future patients.DesignCorpus linguistic methodology was utilized to identify common patterns across the whole corpus of text‐based data, augmented with more detailed sociolinguistic analysis of individual narratives.ResultsThere are broad commonalities in the way the transition experience is described across the corpus in terms of presentation of key experiences and feelings. There are specific descriptions of a number of recurring coping strategies, both positive and negative.ConclusionThe empowerment value of writing these narratives may be limited; the existence of recurring key features suggests that patients may feel they have to present their experiences in certain ways to be accepted for treatment. However, dissemination of some positive coping strategies may help future clients of THCs to better cope with waiting times, as well as assisting practitioners in THCs in supporting their patients during this wait.Patient/Public ContributionThe clinic's Service Users’ Research Advisory Group contributed to formulating the objective and design of the study. Results were presented at the clinic's annual PPI conference

"What do you expect from physiotherapy?": a detailed analysis of goal setting in physiotherapy

Purpose: Health care practice guidelines require physiotherapists to include patients in goal-setting. However, not much is known about how this process is accomplished in practice. The purpose of this study is to analyse patient–physiotherapist consultations and to identify how physiotherapists enquire about goals and how patients respond to these enquiries. Method: 37 consenting patients and their physiotherapist from outpatient physiotherapy practice settings were videotaped. Conversation analysis was used to transcribe and analyse the data. Results: In 11 cases, physiotherapists enquire explicitly about goals. Patients’ responses indicate that problems can arise when therapists’ questions treat it as expected that the patient has a goal already in mind, and has sufficient understanding about “physiotherapy-relevant” goals. Patients’ difficulties with stating a goal are related to patients’ knowledge to propose a goal and whether they treat consultations as one in which it is appropriate to claim knowledge about goals. Conclusions: Goal-setting is not a straightforward process. Practices that entail asking patients to state their goals neither take into consideration the fact that patients may not know what an achievable goal is nor do they consider so-called social reasons for patients not to make claims to their physiotherapist about what the goals should be