Communicating with patients and families about illness progression and end of life: a review of studies using direct observation of clinical practice.

BACKGROUND: There is growing recognition that a diverse range of healthcare professionals need competence in palliative approaches to care. Effective communication is a core component of such practice. This article informs evidence-based communication about illness progression and end of life through a rapid review of studies that directly observe how experienced clinicians manage such discussions. METHODS: The current rapid review updates findings of a 2014 systematic review, focussing more specifically on evidence related to illness progression and end-of-life conversations. Literature searches were conducted in nine bibliographic databases. Studies using conversation analysis or discourse analysis to examine recordings of actual conversations about illness progression or end of life were eligible for inclusion in the review. An aggregative approach was used to synthesise the findings of included studies. RESULTS: Following screening, 26 sources were deemed to meet eligibility criteria. Synthesis of study findings identified the structure and functioning of ten communication practices used in discussions about illness progression and end-of-life. CONCLUSION: The ten practices identified underpin five evidence-based recommendations for communicating with patients or family members about illness progression and end of life.

Advising without personalising: how a helpline may satisfy callers without giving medical advice beyond its remit.

Callers to telephone helplines often seek advice beyond the authorisation of those staffing the service. On health helplines, this poses a problem to the call-taker. How do they manage the dilemma between, on the one hand, exceeding their competence and authority to give medical advice, and, on the other, leaving the caller unsatisfied with the service? We offer a framework in which to set newly identified practices along with those identified in previous studies. Using a set of calls to a medical helpline run by Parkinson's United Kingdom, we show that the call-taker manages the problem by (i) only suggesting courses of action highly marked for impersonality or contingency (displaying a 'low deontic stance', Stevanovic and Peräkylä 2012), and (ii) limiting the interactional risks of tailoring the advice to callers' personal circumstances. We show how our suggested framework of 'advising without personalising' may guide research into the difficult job of delivering advice where the service provider must observe a limit on what they can say.

Orienting to affect in services for people with severe or profound intellectual disabilities: A UK-based investigation.

BACKGROUND: This study argues for displays of affect by people with severe or profound intellectual disabilities to be analysed in the course of everyday interactions with the people who support them. METHOD: Conversation analysis is applied to the affective displays of residents of a social care service for people with severe or profound intellectual disabilities to identify how such displays are taken up and form the basis for further action. RESULTS: Three types of orientations to affect are identified: where the cause of the affect is unknown; where there is a proximal cause; and where the proximal cause is a prior action by a member of staff. Staff orient to affect as expressions of both feelings and cognitions, thereby providing the basis for self-determination. CONCLUSIONS: Displays of affect are a communicative resource for those with severe or profound impairments and must be studied in situ if they are to inform policy and everyday practice.

To initiate repair or not? Coping with difficulties in the talk of adults with intellectual disabilities.

How do health and social care professionals deal with undecipherable talk produced by adults with intellectual disabilities (ID)? Some of their practices are familiar from the other-initiated repair canon. But some practices seem designed for, or at least responsive to, the needs of the institutional task at hand, rather than those of difficult-to-understand conversational partners. One such practice is to reduce the likelihood of the person with ID issuing any but the least repair-likely utterances, or indeed having to speak at all. If they do produce a repairable turn, then, as foreshadowed by earlier work on conversations with people with aphasia, their interlocutors may overlook its deficiencies, respond only minimally, simply pass up taking a turn, or deal with it discreetly with an embedded repair. When the interlocutor does call for a repair, they will tend to offer candidate understandings built from comparatively flimsy evidence in the ID speaker's utterance. Open-class repair initiators are reserved for utterances with the least evidence to go on, and the greatest projection of a response from the interlocutor. We reflect on what this tells us about the dilemma facing those who support people with intellectual disabilities.

When the larger objective matters more: support workers' epistemic and deontic authority over adult service-users.

We report on how support workers sometimes over-ride the wishes of people living with cognitive impairments. This can happen when they are both involved in some project (such as an institutionally-managed game, a physical journey, an educational activity and so on). The support worker might use their deontic authority (to propose, decide or announce future actions) to do things that advance the over-arching project, in spite of proposals for what are cast as diversions from the person with impairments. They might also use their epistemic authority (their greater knowledge or cognitive capacity) to trump their clients' choices and preferences in subordinate projects. Not orienting to suggested courses of actions is generally interactionally dispreferred and troublesome, but, although the providers do sometimes orient to their actions as balking their clients' wishes, they usually do not, and encounter little resistance. We discuss how people with disabilities may resist or palliate such loss of control, and the dilemmas that support staff face in carrying out their duties.

How adults with a profound intellectual disability engage others in interaction.

Using video records of everyday life in a residential home, we report on what interactional practices are used by people with severe and profound intellectual disabilities to initiate encounters. There were very few initiations, and all presented difficulties to the interlocutor (support staff; the recording researcher); one (which we call 'blank recipiency') gave the interlocutor virtually no information at all on which to base a response. Only when the initiation was of a new phase in an interaction already under way (for example, the initiation of an alternative trajectory of a proposed physical move) was it likely to be successfully sustained. We show how interlocutors responded to initiations verbally, as if to neuro-typical speakers - but inappropriately for people unable to comprehend, or to produce well-fitted next turns. This mis-reliance on ordinary speakers' conversational practices was one factor that contributed to residents abandoning the interaction in almost all cases. We discuss the dilemma confronting care workers.

Social support and unsolicited advice in a bipolar disorder online forum.

How does a newly diagnosed user get inducted into a forum dedicated to people suffering from bipolar disorder? Is their opening message "matched" by the forum's reply? We add to the literature on social support online by using conversation analysis (CA) to explore an apparent contradiction between a new user's first post and forum members' replies with ostensibly unsolicited advice. CA reveals the intimate relation between turns in sequence, an aspect of online communication largely ignored in existing work on social support. Seen from this perspective, giving unsolicited advice, although apparently a "mismatch," turns out to be a consequence of the open design of the new user's initial posting. We speculate that such unsolicited advice might function at the ideological level to induct the new user into the mores of the group, not only in the kind of support it countenances giving, but into the very meaning of bipolarity itself.

Companions' dilemma of intervention when they mediate between patients with intellectual disabilities and health staff.

OBJECTIVE: We analyse, for the first time, how companions intervene in the answers that an adult patient with intellectual disabilities gives to their medical practitioner in primary care. METHODS: Video records of 25 health-check consultations in a large multi-ethnic city in the UK were analysed with the qualitative methods of Conversation Analysis. RESULTS: We found that companions' interventions in patients' answers fell along a gradient of low to high entitlement, from mere hinting to outright direct take-over. CONCLUSION: Companions have to manage the dilemma of displaying information which is the proper domain of the patient: encroachment on the patient's epistemic rights versus the needs of the medical practitioner. PRACTICE IMPLICATIONS: Practitioners may need to check the patients themselves when their companions intervene at the most assertive end of the gradient of help.

The dilemma for staff in 'playing a game' with a person with profound intellectual disabilities: empowerment, inclusion and competence in interactional practice.

Games between staff and people with intellectual disabilities serve to promote social engagement and inclusion. However, when the person has limited and idiosyncratic communicative abilities, it may be hard to gauge what his/her own view of the matter is. We examine video-taped records of two episodes in which a staff member of a group home prompted a resident with profound intellectual disabilities to play a verbal and a non-verbal 'game'. We examine how the staff member in these two cases designs her actions to solve the dilemma she faces between, on the one hand, abandoning an activity when the resident does not provide clear indications that she/he wants to continue or, on the other hand, persisting with it until the resident begins to enjoy it or, at least, participate more fully. The solution lies in a pervasive institutional practice: treat resistance or ambiguity as temporary reluctance. We discuss these interactions as examples of how principles of empowerment, inclusion and independence play out in the details of everyday interaction.

Conversational shaping: staff members' solicitation of talk from people with an intellectual impairment.

In initiating and maintaining talk with people with intellectual impairments, members of care staff use a range of recurrent conversational devices. The authors list six of the more common of these devices, explain how they work interactionally, and speculate on how they serve institutional interests. As in other dealings between staff members and the people with intellectual impairments they support, there is a pervasive dilemma between, on one hand, encouraging participation and, on the other, getting institutional jobs done. The authors show how the practices of encouraging talk that they describe move between the two horns of that dilemma.

The staff are your friends: intellectually disabled identities in official discourse and interactional practice.

Talk between care staff and people with learning disabilities may reveal a conflict between official policy and actual social practice. We explore a case in which care staff are in the process of soliciting residents' views on 'relationships'. Ostensibly, this is an empowering part of a group meeting, meant to help the residents understand their relationships with the people around them, and to value those which are positive. However, the talk mutates from solicitation to instruction and, in doing so, provides a vivid case of people with learning disabilities being attributed social rights more limited than is consistent with institutional service policy. We unpack the play of category membership in this episode to illustrate how conflicting agendas can lead to the construction, even in ostensibly empowering encounters, of identities actively disavowed at the level of official discourse.

Self-disclosure as a situated interactional practice.

Self-disclosure has long been a site of research in clinical and social psychology, where it suffers the fate of many interactional phenomena. It is operationalized (typically, into a set of bald statements of varying intimacy), and measured as a dependent variable (subject to the operation of factors like the age or gender of the discloser, the degree of acquaintance with the disclosed-to recipient, the expectation of reciprocity and so on), or manipulated as a causative independent variable (which affects such things as the perception of the discloser, the effectiveness of therapy, and so on). This treatment of self-disclosure, embedded in a research culture of a-contextual, experimenter-defined phenomena, risks missing the point that in ordinary life, self-disclosure is a social performance which must be brought off in interaction, and has its interactional context and its interactional consequences. When we examine examples of such brought-off disclosures, we start to see patterns in their design as voluntary revelations of personal data, and patterns in their social function, which are invisible to the standard factors and measures paradigm of experimental social psychology.

Can People With Intellectual Disability Resist Implications of Fault When Police Question Their Allegations of Sexual Assault and Rape?

When people alleging sexual assault are interviewed by police, their accounts are tested to see if they would stand up in court. Some tests are in the form of tendentious questions carrying implications (e.g., that the sex was consensual) damaging to the complainant's allegation. In a qualitative analysis of 19 English police interviews with people with intellectual disability (ID) defined in a variety of ways, we show how people with ID deal with the pragmatic complexity of such tendentious questions. We give examples in which the complainants detect and resist the questions' damaging implications; but we focus on occasions when the complainants do not do so. We discuss the use of tendentious questions in the light of national United Kingdom guidelines on the treatment of vulnerable witnesses.

Seven interactional benefits of physical tasks for people with intellectual disability.

People with intellectual disability can be supported by staff encouraging their skills in communication and in physical tasks. In a qualitative study, I used video evidence from a residential home and from 2 garden therapy services to argue that physical tasks are structurally more likely to result in successful performance (and corresponding positive assessment), whereas verbal tasks tend to result in failure (and corresponding correction and unsatisfactory interaction). I suggested 7 distinguishing characteristics of the 2 kinds of task and briefly discussed the policy implications for supporting people with intellectual disability.

Beware the 'Loughborough School' of Social Psychology? Interaction and the politics of intervention.

The authors explain the attractions of applying discursive psychology (DP) and conversation analysis (CA) by reporting three different examples of their engagement with practitioners and clients. Along the way, a case is made for separating DP/CA from other kinds of qualitative analysis in social psychology, and for deconstructing some commonly held misunderstandings and caricatures of DP/CA.

To vaccinate or not? The disqualification of commercial sources of health advice in an online forum.

Public health debates in online forums allow the emergence of ordinary practical reasoning about 'official' health information. We used a Discursive Psychology approach to analyse postings in a forum devoted to the discussion of the H1N1 (Swine flu) virus. We identify the discursive practices that contributors use to valorize certain elements in the debate (what they cast as science, rationality and 'proper' scepticism) over others (especially commercial interests, 'charlatanism' and 'profiteering'). A forum participant can be disqualified on the basis of their alleged partiality and interest, if they can be accused of having a commercial stake in the matter. But no such opprobrium results if they have a 'scientific' interest.

Psychotherapists' practices in keeping a session 'on-track' in the face of clients' 'off-track' talk.

Based on an inspection of sessions with intellectually impaired and non-impaired clients, five conversational practices are identified by which a cognitive behaviour psychotherapist may keep the session 'on-track' in the face of possible deviation. Close inspection of audio- and video-recordings reveals a gradient of therapist responses. They range between minimal receipt of what the client has said, even when this would otherwise have warranted expansion, all the way to explicit active topic shift which is more directive. The operation of these topic-management practices is explained using Conversation Analysis, and their therapeutic utility and possible dangers are outlined. The article ends with a brief sketch of the tension between an 'outsider's' Conversation-Analysis perspective on the organization of therapy talk, and a therapist's, 'insider's' view of the meanings and intentions of what participants say.

Saying no to the staff: an analysis of refusals in a home for people with severe communication difficulties.

People with severe communication difficulties may attempt to exercise control over their lives by verbally or non-verbally refusing an activity proposed by supporters. We detail examples in which such refusals are treated by care home staff as a temporary reluctance, warranting further attempts to persuade the individual to co-operate. We identify the following conversational (and bodily) practices by which staff achieve their institutional ends: appreciating a resident's behaviour as something other than refusal; formulating the invitation again in a no-blame format; minimising the task required; escalating the invitation to a request and an order; moving the person bodily; and positively glossing the proceedings. Dealing with refusals illustrates the dilemma faced by institutional personnel in health and care settings in accepting choices which might disrupt the efficient management of the service.

When psychotherapists disclose personal information about themselves to clients.

Psychotherapists sometimes disclose personal information to their clients during therapeutic sessions. We report here our analysis of how these 'therapist self-disclosures' are done. In a sample of 15 sessions involving four therapists, we find that all therapists use them sparingly and some not at all. When they do, they 'match' something in the client's preceding turn. Vehicles for the match can range from comparatively simple agreements to more complicated 'second stories', which use analogies from the therapists' own current life. We find that these 'personal' disclosures are invariably rather ordinary but are made to bear visibly on the therapeutic business at hand, though not always in obvious ways. The ordinariness of therapist's self-disclosures underpins what seems to be one of their main actions-to 'normalize', for a number of disparate local interactional contingencies, the clients' experience. We discuss the practice of using one's own life experiences to bear on one's client's troubles, noting the recurrent features of extreme case formulations and explicit recipient design. We conclude with a brief discussion of the relation between our analyses and those which might be offered by members of the therapeutic community.

Producing decisions in service-user groups for people with an intellectual disability: two contrasting facilitator styles.

Service-user groups whose goals include the promotion of self-advocacy for people with an intellectual disability aim, among other things, to encourage service users to identify problems and find solutions. However, service users' contributions to group sessions may not always be full and spontaneous. This presents a dilemma to the facilitator. In two case studies, we identify two ways in which the dilemma is managed. In one case, the facilitator takes an initiating role in each stage of a decision-making cycle. In the other, the facilitator short-circuits the decision-making cycle. The former seems to be closer to the philosophy of self-advocacy, but both nevertheless result in clients not taking the initiative and arguably disempowers them.