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1.
Health (London) ; : 13634593241238856, 2024 Apr 04.
Article in English | MEDLINE | ID: mdl-38576080

ABSTRACT

This paper examines how terms of endearment (ToE) are used as a mitigation device in interactions between staff and people living with dementia (PLWD) in the acute hospital environment. ToE are often discouraged in training for healthcare staff. However, this research demonstrates that they are still commonly used in practice. Using conversation analysis, video and audio data were examined to identify the interactional functions of ToE. Analysis showed that ToE play an important role in mitigating potentially face-threatening actions such as when patients are asked to repeat hard-to-interpret talk, or when patient agency is compromised through instruction sequences or having necessary healthcare tasks undertaken. The success of this mitigation is sensitive to the specific interactional circumstances, as well as the responsiveness of the HCP to the patient's voiced concerns. These findings have implications for healthcare practice, training and wider care of PLWD.

2.
Health Expect ; 26(6): 2461-2474, 2023 12.
Article in English | MEDLINE | ID: mdl-37589441

ABSTRACT

BACKGROUND: Actors portraying simulated patients are widely used in communication skills training in healthcare, but debates persist over the authenticity of these interactions. However, healthcare professionals value simulation-based training because of the opportunity to think and react in real time, which alternatives cannot provide. OBJECTIVE: To describe a method for the use of simulation which maximises authenticity by grounding training in real, observed, patterns of patient communication. DESIGN: Naturally occurring care interactions were video recorded and analysed using conversation analysis (CA) to identify communication patterns. We focused on sites of recurring interactional trouble as areas for training, and identified more and less effective ways of dealing with these. We used the CA findings to train actors portraying simulated patients, based on the observed interactional patterns. SETTINGS AND PARTICIPANTS: Patients living with dementia and healthcare practitioners (HCPs) on two acute healthcare of the elderly wards in the English East Midlands. OUTCOME MEASURES: One month later HCPs reported using the skills learned in clinical practice. Masked-ratings of before and after simulated patient encounters confirmed these self-reports in relation to one key area of training. RESULTS: The Conversation Analysis Based Simulation (CABS) method used in this setting showed positive results across a range of quantitative and qualitative outcome measures. What is significant for the transferability of the method is that qualitative feedback from trainees highlighted the ability of the method to not only illuminate their existing effective practices, but to understand why these were effective and be able to articulate them to others. DISCUSSION/CONCLUSION: While the CABS method was piloted in the dementia care setting described here, it has potential applicability across healthcare settings where simulated consultations are used in communication skills training. Grounding simulated interaction in the observed communication patterns of real patients is an important means of maximising authenticity. PATIENT AND PUBLIC CONTRIBUTION: The VideOing to Improve dementia Communication Education (VOICE) intervention which piloted the CABS method was developed by a multidisciplinary team, including three carers of people with dementia. People living with dementia were involved in the rating of the before and after video simulation assessments.


Subject(s)
Communication , Dementia , Humans , Aged , Caregivers/education , Delivery of Health Care , Health Personnel/education , Dementia/therapy
3.
Soc Sci Med ; 333: 116111, 2023 09.
Article in English | MEDLINE | ID: mdl-37572632

ABSTRACT

It is well known that the demands of working in healthcare can take a psychological toll on staff. Schwartz Centre Rounds are an intervention aimed at supporting staff wellbeing through providing a forum to talk about the emotional, social and ethical complexities of such work, employing facilitated storytelling and group discussion to try and achieve this. However, while prior research, through extensive interviews and surveys, has found Schwartz Rounds to be effective in fostering compassion and wellbeing amongst participants, the talk that occurs within Schwartz Rounds themselves has not been explored. One mechanism that has been considered in how Schwartz Rounds function is the creation of a 'counter-cultural', conversational space, suggesting the nature of the interactions themselves may be important in achieving their beneficial effects. Using conversation analytic (CA) methods, we examine Schwartz Rounds in the UK to address, at a detailed micro-level, how sequences of talk work to accomplish the key aims of this setting. Five separate one-hour Schwartz Rounds were recorded across three UK hospital Trusts, between January 2019 and February 2020. Our analysis addresses how panellists tell their stories in a way that emphasises the uniqueness of their experience but also provides a generalisable emotional 'upshot' and 'stance' for the audience to later respond to. We then focus in on how audience members are able to respond to these stories affiliatively, offering endorsements, generalisations and second stories. Drawing on prior CA literature examining support groups and psychotherapy, we consider how the format of Schwarz Rounds creates important opportunities for interpersonal affiliation in this context. Considering these interactional features alongside other research findings on Schwartz Rounds, we discuss how opportunities for interactional affiliation may be central to their success, with implications for how these interactions can be best facilitated.


Subject(s)
Delivery of Health Care , Empathy , Humans , Emotions , Health Facilities
4.
Health Expect ; 26(5): 1785-1788, 2023 10.
Article in English | MEDLINE | ID: mdl-37469280

ABSTRACT

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.


Subject(s)
Attitude , Delivery of Health Care , Humans , Morals , Patient-Centered Care/methods
5.
Health (London) ; : 13634593221127822, 2022 Oct 13.
Article in English | MEDLINE | ID: mdl-36226854

ABSTRACT

This article explores how partners keep the conversation going with people living with dementia (PLWD) when speaking about shared memories. Remembering is important for PLWD and their families. Indeed, memory loss is often equated with identity loss. In conversation, references to shared past events (co-rememberings) can occasion interactional trouble if memories cannot be mutually recalled. This article analyses partners' interactional practices that enable progressivity in conversations about shared memories with a PLWD. In previous research, both informal and formal carers have reported that they can find interacting with PLWD difficult. Identifying practices used by partners is one way to begin addressing those difficulties. Analytical findings are based on over 26 hours of video data from domestic settings where partners have recorded their interactions with their spouse/close friend who is living with dementia. The focus is on 14 sequences of conversation about shared memories. We show how particular practices (candidate answers, tag questions and single-party memory of a shared event) structure the interaction to facilitate conversational progression. When partners facilitate conversational progressivity, PLWD are less likely to experience stalls in conversation. Our findings suggest the actual recall of memory is less relevant than the sense of shared connection resulting from the conversational activity of co-remembering, aiding maintenance of individual and shared identities. These findings have relevance for wider care settings.

6.
Health Expect ; 25(5): 2515-2524, 2022 10.
Article in English | MEDLINE | ID: mdl-35909322

ABSTRACT

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 groups and (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 outcomes and 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, organization and 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.


Subject(s)
Anemia, Sickle Cell , Adolescent , Humans , Anemia, Sickle Cell/therapy , COVID-19/epidemiology , Delivery of Health Care , Ghana , Pandemics , Translational Science, Biomedical
7.
Sociol Health Illn ; 44(6): 1027-1046, 2022 06.
Article in English | MEDLINE | ID: mdl-35488415

ABSTRACT

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 12-17 years 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.


Subject(s)
Adaptation, Psychological , Anemia, Sickle Cell , Adolescent , Anemia, Sickle Cell/complications , Child , Chronic Disease , Fatigue/etiology , Humans
8.
Soc Sci Med ; 282: 114156, 2021 08.
Article in English | MEDLINE | ID: mdl-34182355

ABSTRACT

People living with dementia (PLWD) are almost always admitted to the acute hospital for reasons unrelated to their dementia, finding themselves in the unfamiliar environment of a Health Care of Older Persons acute ward. The effect of this environment creates a challenge not just for a PLWD themselves, but also for the staff who care for them. Concerns have been raised by both policy makers and staff about the quality of communication between hospital staff and PLWD. Using conversation analysis, we examined 41 video recordings of healthcare professional (HCP)/PLWD interactions collected across three acute inpatient wards in a large teaching hospital in the UK. In this paper, we focus our analysis on hard-to-interpret talk (talk where there are problems in hearing, speaking and/or understanding), and the ways in which healthcare professionals respond to this. Repair of hard- to- interpret talk is common in ordinary interaction, but we find that HCPs in this setting use a range of approaches to avoid direct repair. These approaches are: the use of non-committal responses and continuers such as 'yeah' or nods; the use of repetitions or partial repetitions; responding to the emotional tone displayed in the PLWD's utterance; closing the current topic and shifting to the next; and treating the PLWD's talk as related to the task at hand. We suggest that the use of these approaches may be one way in which HCPs manage respecting the personhood of the PLWD, by preserving face and enabling a continuation of an interaction in which the PLWD can take an active part. Our paper provides an empirical demonstration of the high level of interactional skill involved in dementia care work. It also illustrates how these skills can be described and specified, and hence incorporated into the recommendations and tips that are produced for communication with PLWD.


Subject(s)
Dementia , Aged , Aged, 80 and over , Communication , Delivery of Health Care , Health Personnel , Hospitals , Humans
9.
Health Expect ; 24(2): 719-727, 2021 04.
Article in English | MEDLINE | ID: mdl-33629441

ABSTRACT

BACKGROUND: This 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. OBJECTIVE: Narratives 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. DESIGN: Corpus 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. RESULTS: There 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. CONCLUSION: The 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 CONTRIBUTION: The 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.


Subject(s)
Transgender Persons , Adaptation, Psychological , Female , Gender Identity , Humans , Male , Narration , Prospective Studies
10.
Soc Sci Med ; 263: 113188, 2020 10.
Article in English | MEDLINE | ID: mdl-32823045

ABSTRACT

A quarter of UK acute hospital beds are occupied by people living with dementia (PLWD). Concerns have been raised by both policy makers and carers about the quality of communication between hospital staff and PLWD. PLWD may experience communication impairments such as word finding difficulties, limited ability to construct coherent narratives and difficulties understanding others. Since much healthcare delivery occurs through talk, healthcare professionals (HCPs) and PLWD are likely to experience increased communication barriers. Consistent with this, HCPs report stress and reduced job satisfaction associated with difficulty communicating with PLWD. HCPs face these challenges whilst striving to deliver person-centred care, respecting the autonomy and wishes of the patient before them. However, best practice recommendations in the field tend not to be based on actual interactional evidence. This paper investigates recurring interactional difficulties around HCP requests to carry out health and social care tasks and subsequent reluctance or refusal on the part of PLWD. Using conversation analysis, we examined 41 video recordings of HCP/PLWD interactions collected across three acute inpatient wards. We identify both the nature of the refusals, and any mitigation offered, and explore the requests preceding them in terms of entitlement and contingency. We also explore the nature of HCP requests which precede PLWD agreement with a course of action. We conclude that several features of requests can be seen to precede acceptance, principally the use of higher entitlement requests, and the lowering of contingencies. Our findings underline the importance of examining the contextual interactional detail involved in the negotiation of healthcare, which here leads to an understanding of how design of HCP requests can impact on an important healthcare activity being carried out. They also emphasise the power of conversation analytic methods to identify areas of frequent interactional trouble in dementia care which have not previously been articulated.


Subject(s)
Dementia , Negotiating , Caregivers , Health Personnel , Hospitals , Humans
11.
BMJ ; 368: m128, 2020 01 15.
Article in English | MEDLINE | ID: mdl-31941648
12.
Sociol Health Illn ; 41(6): 1120-1137, 2019 07.
Article in English | MEDLINE | ID: mdl-31278758

ABSTRACT

Healthcare encounters involving participants from diverse linguistic backgrounds are becoming more common due to the globalisation of health care and increasing migration levels. Research suggests that this diversity has a significant impact on health outcomes; however less is known about how it is managed in the actual consultation process. This article presents an analysis of antenatal screening consultations video recorded in Hong Kong, using conversation analysis. We consider how the use of a second or subsequent language impacts on these consultations, and on discussions and decisions about further action. The presence or absence of shared first language did not appear to affect the extent to which particular courses of action were promoted or recommended. Recommendations were a common occurrence across consultations with and without shared first language. However, we argue that the routine use of recommendations can be consequential, as second language speakers may have more limited resources to interrogate or contest these. This finding has implications for the ability for professionals to maximise patient involvement in decision-making.


Subject(s)
Communication , Language , Physician-Patient Relations , Prenatal Diagnosis , Referral and Consultation , Decision Making, Shared , Female , Hong Kong , Humans , Patient Participation , Pregnancy , Qualitative Research
13.
BMC Med Educ ; 18(1): 267, 2018 Nov 19.
Article in English | MEDLINE | ID: mdl-30453956

ABSTRACT

BACKGROUND: This paper responds to previously published debate in this journal around the use of sociolinguistic methods in communication skills training (CST), which has raised the significant question of how far consultations with simulated patients reflect real clinical encounters. This debate concluded with a suggestion that sociolinguistic methods offer an alternative analytic lens for evaluating CST. We demonstrate here that the utility of sociolinguistic methods in CST is not limited to critique, but also presents an important tool for development and delivery. METHODS: Following a scoping review of the use of role play and simulated interaction in CST for healthcare professionals, we consider the use of the specific sociolinguistic approach of conversation analysis (CA), which has been applied to the study of health communication in a wide range of settings, as well as to the development of training. DISCUSSION: Role play and simulated interaction have been criticised by both clinicians and sociolinguists for a lack of authenticity as compared to real life interactions. However they contain a number of aspects which healthcare professionals report finding particularly useful: the need to think on one's feet in real time, as in actual interaction with patients; the ability to receive feedback on the simulation; and the ability to watch and reflect on how others approach the same simulation task in real time. Since sociolinguistic approaches can help to identify inauthenticity in role play and simulation, they can also be used to improve authenticity. Analysis of real-life interactions using sociolinguistic methods, and CA in particular, can identify actual interactional practices that are used by particular patient groups. These practices can then be used to inform the training of actors simulating patients. In addition, the emphasis of CA on talk as joint activity means that proper account can be taken of the way in which simulated interaction is co-constructed between simulator and trainee. We suggest that as well as identifying potential weaknesses in current role play and simulation practice, conversation analysis offers the potential to enhance and develop the authenticity of these training methods.


Subject(s)
Communication , Education, Medical, Continuing , Health Personnel/education , Patient Simulation , Role Playing , Attitude of Health Personnel , Health Personnel/psychology , Humans , Interpersonal Relations , Language , Physician-Patient Relations , Process Assessment, Health Care , Program Development
14.
PLoS One ; 13(6): e0198567, 2018.
Article in English | MEDLINE | ID: mdl-29889878

ABSTRACT

BACKGROUND: A quarter of acute hospital beds are occupied by persons living with dementia, many of whom have communication problems. Healthcare professionals lack confidence in dementia communication skills, but there are no evidence-based communication skills training approaches appropriate for professionals working in this context. We aimed to develop and pilot a dementia communication skills training course that was acceptable and useful to healthcare professionals, hospital patients and their relatives. METHODS: The course was developed using conversation analytic findings from video recordings of healthcare professionals talking to patients living with dementia in the acute hospital, together with systematic review evidence of dementia communication skills training and taking account of expert and service-user opinion. The two-day course was based on experiential learning theory, and included simulation and video workshops, reflective diaries and didactic teaching. Actors were trained to portray patients living with dementia for the simulation exercises. Six courses were run between January and May 2017. 44/45 healthcare professionals attended both days of the course. Evaluation entailed: questionnaires on confidence in dementia communication; a dementia communication knowledge test; and participants' satisfaction. Video-recorded, simulated assessments were used to measure changes in communication behaviour. RESULTS: Healthcare professionals increased their knowledge of dementia communication (mean improvement 1.5/10; 95% confidence interval 1.0-2.0; p<0.001). Confidence in dementia communication also increased (mean improvement 5.5/45; 95% confidence interval 4.1-6.9; p<0.001) and the course was well-received. One month later participants reported using the skills learned in clinical practice. Blind-ratings of simulated patient encounters demonstrated behaviour change in taught communication behaviours to close an encounter, consistent with the training, but not in requesting behaviours. CONCLUSION: We have developed an innovative, evidence-based dementia communication skills training course which healthcare professionals found useful and after which they demonstrated improved dementia communication knowledge, confidence and behaviour.


Subject(s)
Clinical Competence , Dementia/pathology , Health Personnel/psychology , Education, Medical, Continuing , Female , Humans , Male , Personal Satisfaction , Program Evaluation , Video Recording
15.
Sociol Health Illn ; 40(7): 1215-1232, 2018 09.
Article in English | MEDLINE | ID: mdl-29797473

ABSTRACT

Many characteristics typical of autism, a neurodevelopmental condition characterised by socio-communicative impairments, are most evident during social interaction. Accordingly, procedures such as the Autism Diagnosis Observation Schedule (ADOS) are interactive and intended to elicit interactional impairments: a diagnosis of autism is given if interactional difficulties are attributed as a persistent quality of the individual undergoing diagnosis. This task is difficult, first, because behaviours can be interpreted in various ways and, second, because conversation breakdown may indicate a disengagement with, or resistance to, a line of conversation. Drawing upon conversation analysis, we examine seven ADOS diagnosis sessions and ask how diagnosticians distinguish between interactional resistance as, on the one hand, a diagnostic indicator and, on the other, as a reasonable choice from a range of possible responses. We find evidence of various forms of resistance during ADOS sessions, but it is a resistance to a line of conversational action that is often determined to be indicative of autism. However, and as we show, this attribution of resistance can be ambiguous. We conclude by arguing for reflexive practice during any diagnosis where talk is the problem, and for a commitment to acknowledge the potential impact of diagnostic procedures themselves upon results.


Subject(s)
Autistic Disorder/diagnosis , Interpersonal Relations , Communication , Humans , Neuropsychological Tests , Patient Acceptance of Health Care/psychology , Young Adult
16.
Soc Sci Med ; 191: 212-225, 2017 10.
Article in English | MEDLINE | ID: mdl-28934622

ABSTRACT

Around a quarter of hospital beds in the UK are occupied by patients living with dementia (PWD), and communication impairments are common across all types of dementia, often exacerbated by the hospital environment. Unsurprisingly, healthcare professionals (HCPs) report particular challenges in caring for this patient group, whilst trying to recognise and value their personhood as per the underpinning ethos of person-centred care. However, whilst there is a growing body of research that underlines the importance of communication in dementia care, there is far less that actually examines this communication in real time interaction. Suggestions and pointers for good communication do exist, but these do not tend to be empirically derived, and sometimes conflict with empirical findings. This paper focuses on a specific area of interaction which has previously received very little attention: the way in which healthcare encounters are ended or closed. There is potentially a conflict between a pressure to manage a patient as efficiently as possible, and endeavouring to ensure person-centred care and deal with communication difficulties arising from dementia. Using conversation analysis, we examined forty-one video recordings of HCP/PWD interactions collected from an acute inpatient ward. We identify three phenomena around which there were recurring troubles in our dataset: 'open-ended pre-closings', 'mixed messages' and 'non specifics and indeterminate terms'. We conclude that moves towards closing an encounter that appear intuitive to HCPs as competent interactants, and that may represent best practice in other healthcare settings, may in fact serve to confuse a PWD and create difficulties with closings. Our findings underline the importance of examining best practice guidance as it is actually talked into being, using approaches which can unpack the interactional detail involved. They also emphasise the importance of context in the analysis of healthcare delivery, to avoid a 'one size fits all' approach.


Subject(s)
Dementia/complications , Health Personnel/psychology , Professional-Patient Relations , Communication , Dementia/psychology , Humans , Patient-Centered Care/methods , United Kingdom
17.
Cancer Nurs ; 40(2): E9-E16, 2017.
Article in English | MEDLINE | ID: mdl-27070222

ABSTRACT

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.


Subject(s)
Alopecia/chemically induced , Alopecia/psychology , Antineoplastic Agents/adverse effects , Breast Neoplasms/drug therapy , Carcinoma, Intraductal, Noninfiltrating/drug therapy , Social Identification , Adult , Aged , Aged, 80 and over , Breast Neoplasms/pathology , Carcinoma, Intraductal, Noninfiltrating/pathology , Female , Humans , Interpersonal Relations , Middle Aged , Neoplasm Staging , Qualitative Research , Stereotyping
18.
Sociol Health Illn ; 39(3): 458-473, 2017 03.
Article in English | MEDLINE | ID: mdl-27577849

ABSTRACT

This study explores women's perceptions of social interaction during and after their treatment for early stage breast cancer. An analysis of interviews with 24 women between 6 months and 29 years post-diagnosis reveals that interactions can be influenced by conflicting public discourses surrounding breast cancer. For example, there is the continuing association of cancer with death and the resulting potential for a stigmatised identity. In contrast is the ultra-positive discourse around cancer survivorship, with breast cancer in particular being associated with pink campaigning and a push towards positive thinking. Participants described managing conversations during treatment; sometimes playing down their private suffering and presenting a positive (public) image rather than risk alienating support. After treatment they were encouraged to move on and get back to 'normal'. While other breast cancer patients and survivors were often good sources of support, there was also a danger of assuming that all experiences would be the same. We present data to illustrate that women often present public accounts that are driven by an expectation of positivity and fear of stigmatisation at all stages of breast cancer treatment and beyond.


Subject(s)
Breast Neoplasms/psychology , Breast Neoplasms/therapy , Interpersonal Relations , Survivors/psychology , Adaptation, Psychological , Adult , Attitude to Health , Female , Humans , Interviews as Topic , Middle Aged , Social Stigma , Social Support , Survivors/statistics & numerical data
19.
Soc Sci Med ; 151: 121-9, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26802368

ABSTRACT

Increasing numbers of women are surviving breast cancer, but little is known about the long-term implications of having survived a life-threatening illness and living with embodied reminders of its potential to return. Twenty-four women aged between 42 and 80 (median = 51)who had been treated for early stage breast cancer in the UK between 6 months and 29 years previously, were recruited through local media and interviewed. Analysis of their narratives revealed challenges in the post-treatment period that were conceptualised as biographical disruption and liminality. Although no longer ill, an ongoing fear of recurrence combined with embodied changes prevented a return to 'normal' i.e. a pre-cancer state in terms of health status, identity and relationships. We argue that following the biographical disruption of breast cancer, a 'new normal' entails a continual renegotiation of identities, daily lives and futures as time passes and lives evolve.


Subject(s)
Adaptation, Psychological , Breast Neoplasms/therapy , Survivors/psychology , Adult , Aged , Aged, 80 and over , Fear , Female , Humans , Middle Aged , Qualitative Research , Survivors/statistics & numerical data
20.
Soc Sci Med ; 151: 38-45, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26773291

ABSTRACT

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.


Subject(s)
Interviews as Topic/methods , Outcome Assessment, Health Care/methods , Outcome Assessment, Health Care/standards , Humans , Longitudinal Studies , Qualitative Research
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