The use of Talking Mats to support people with dementia and their carers to make decisions together

Policy guidelines insist that people with dementia should be involved in decisions about key life choices and transitions. However, as dementia affects both cognitive and communication difficulties, it becomes increasingly difficult to do this, and innovative and effective ways to support people with dementia and their carers to interact with each other are needed. This project, funded by Joseph Rowntree Foundation, examined if Talking Mats, a low‐tech communication framework, could support family carers and people with dementia to discuss issues around daily living with each other. The fieldwork phase took place from September 2008 to May 2009. Eighteen couples (person with dementia and their family carer) from Scotland and the North of England were involved. The couples were visited in their own homes and asked to discuss together four topics (Personal Care; Getting Around; Housework; Activities) under two different conditions: (i) using the Talking Mats framework and (ii) using their usual communication methods (UCMs). After the interviews, each participant was asked separately to complete a short questionnaire (Involvement Measure), which included five questions to evaluate how involved s/he felt in each type of discussion and a final question to measure satisfaction with the overall discussion. The findings show that both people with dementia and their carers feel more involved in discussions about how they are managing their daily living when using the Talking Mats framework, compared with their UCM. They also feel more satisfied with the outcome of those discussions. The use of Talking Mats could result in increased well‐being and positive adjustment to accepting increasing levels of care for people with dementia. In addition, it could improve the relationship between the person with dementia and family carers, if all involved feel that the views of the person with dementia and the family carer have truly been acknowledged.     

Best interests decisions: professional practices in health and social care

This paper reports on data collected in 2011 from a national study about the operation of the best interests principle, a key feature of the Mental Capacity Act (MCA) 2005 for England and Wales. The objective was to provide a picture of current professional practices in best interests decision‐making. Four contrasting sample sites were selected, in which National Health Service trusts, social care and other organisations were recruited to participate. A multimethod design was followed, including an online survey with 385 participants, followed by qualitative research through a telephone survey of 68 participants, and face‐to‐face semi‐structured interviews following up 25 best interests cases, with different perspectives on the process in 12 of those cases. The current paper reports only on the qualitative findings. The findings indicate that the MCA was successful in providing a structure for these practitioners, and that the five principles of the MCA were in general adhered to. A variety of perceived risks led to best interests processes being undertaken, and a typical scenario was for a period of hospitalisation or ill health to trigger a best interests decision process about a social care and or a life decision. The study supported previous research in finding the notion of capacity the most difficult aspect of the MCA, and it provides evidence of some specific capacity assessment practices, including problematic ones relating to ‘insight’. Best interests decisions were often made by consensus, with practitioners taking on different roles within the process. Meetings played a key part, but other ways of involving people lacking capacity and significant others were also important. It was recommended that the issues highlighted in this research could be clarified further in the Code of Practice, or within risk guidance.     

Exploring online identity construction for the caregivers of adults living with dementia and the value of interactions with health and social care professionals

Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172 entries) were selected through purposive and snowball sampling, and discourse analysis was used to analyse online identity construction for informal caregivers of adults living with dementia. Six areas of online identity construction were identified: changing family role; powerful expert social campaigner; being an advocate; guardian of their relative's selfhood; sustaining creative and spiritual individuality and wider community member in online and real life. Further to this, the importance of health and social care service interactions in the development of caregiver identity revealed that professionals must ensure person-centred service contacts for caregivers. This is a challenging task in the pandemic climate where interactions between health and social care professionals and caregivers are limited due to isolation measures. It is evident that the blog format can provide a forum through which the identity of the caregiver of an adult living with dementia can evolve. The six areas of identity construction reveal the multifaceted nature of identity for the caregiver and the value of belonging to an online community both in relation to identity construction and support. This finding is especially applicable in the current pandemic when accessing a face-to-face community is challenging for caregivers who may be shielding or living in isolation. The findings of this research can aid health and social care professionals in understanding the development of caregiver identity and in providing appropriate support during service interactions, on accessing virtual and face to face community support.     

Advice,authority and autonomy in shared decision‐making in antenatal screening: the importance of context

Shared decision‐making (SDM) has been widely advocated across many branches of healthcare, yet there is considerable debate over both its practical application and how it should be examined or assessed. More recent discussions of SDM have highlighted the important of context, both internal and external to the consultation, with a recognition that decisions cannot be understood in isolation. This paper uses conversation analysis (CA) to examine how decision‐making is enacted in the context of antenatal screening consultations in Hong Kong. Building on previous CA work (Collins et al. 2005 , Toerien et al. 2013), we show that, whilst previously identified formats are used here to present the need for a decision, the overriding basis professionals suggest for actually making a decision in this context is the level of worry or concern a pregnant woman holds about potential foetal abnormality. Professionals take an unknowing ‘epistemic stance’ (Heritage 2012 ) towards this worry, and hence step back from involvement in decision‐making. We argue that this is linked to the non‐directive ethos that prevails in antenatal screening services, and suggest that more research is needed to understand how the enactment of SDM is affected by wider professional contexts and parameters.     

Assessing collaborative efforts of making care fit for each patient: A systematic review

Introduction

For too many people, their care plans are designed without fully accounting for who they are, the lives they live, what matters to them or what they aspire to achieve. We aimed to summarize instruments capable of measuring dimensions of patient–clinician collaboration to make care fit.

Methods

We systematically searched several databases (Medline, Embase, Cochrane, Scopus and Web of Science) from inception to September 2021 for studies using quantitative measures to assess, evaluate or rate the work of making care fit by any participant in real-life clinical encounters. Eligibility was assessed in duplicate. After extracting all items from relevant instruments, we coded them deductively on dimensions relevant to making care fit (as presented in a recent Making Care Fit Manifesto), and inductively on the main action described.

Results

We included 189 papers, mostly from North America (N = 83, 44%) and in the context of primary care (N = 54, 29%). Half of the papers (N = 88, 47%) were published in the last 5 years. We found 1243 relevant items to assess efforts of making care fit, included within 151 instruments. Most items related to the dimensions ‘Patient-clinician collaboration: content’ (N = 396, 32%) and ‘Patient-clinician collaboration: manner’ (N = 382, 31%) and the least related to ‘Ongoing and iterative process’ (N = 22, 2%) and in ‘Minimally disruptive of patient lives’ (N = 29, 2%). The items referred to 27 specific actions. Most items referred to ‘Informing’ (N = 308, 25%) and ‘Exploring’ (N = 93, 8%), the fewest items referred to ‘Following up’, ‘Comforting’ and ‘Praising’ (each N = 3, 0.2%).

Discussion

Measures of the work that patients and clinicians do together to make care fit focus heavily on the content of their collaborations, particularly on exchanging information. Other dimensions and actions previously identified as crucial to making care fit are assessed infrequently or not at all. The breadth of extant measures of making care fit and the lack of appropriate measures of this key construct limit both the assessment and the successful implementation of efforts to improve patient care.

Patient Contribution

Patients and caregivers from the ‘Making care fit Collaborative’ were involved in drafting the dimensions relevant to patient–clinician collaboration.     

Shared decision making in oncology: assessing oncologist behaviour in consultations in which adjuvant therapy is considered after primary surgical treatment

Introduction Shared decision making (SDM) is now considered a desirable goal in health care, yet little is known about current practice in cancer care, and its impact on patient outcomes. This study aimed to develop an oncology‐specific coding system for SDM, explore variations in SDM according to patient and disease characteristics, determine the relationship between SDM and patient satisfaction with the consultation, and explore the impact of SDM on patient anxiety. Methods Sixty‐three medical and radiation oncology consultations with patients with primary cancer involving consideration of adjuvant therapy after surgery were audio‐taped, transcribed and coded. Intra and inter‐rater reliability of the coding system was 95 and 90% respectively. Patients completed questionnaires before and after the consultation. Results Construct validity of the SDM coding system was successfully conducted. Oncologists demonstrated on average under 11 of 18 SDM behaviours. Behaviours seeking patient preferences were particularly rare. SDM behaviours were more apparent in consultations involving female breast cancer patients. SDM behaviour scores in combination with patient involvement preference could predict achievement of patient involvement preference but not overall patient satisfaction. Although there was no overall relationship between patient anxiety and SDM scores, it did appear that physicians may change SDM behaviour according to patient factors including anxiety. Conclusion Our findings reinforce the importance of the doctor in facilitating shared decision making in oncology consultations.     

‘She's usually quicker than the calculator’: financial management and decision‐making in couples living with dementia

This article explores how married couples managed their finances and made financial decisions when one spouse had dementia, drawing comparisons with the approaches used prior to the illness. More specifically, the article examines the role of social factors in influencing the involvement of people with dementia in financial management and decision‐making, particularly whether a gender dynamic adopted earlier in a marriage similarly influenced a gendered approach following dementia. The research formed part of a larger study of everyday decision‐making by couples living with dementia which explored the role of non‐cognitive factors in influencing whether people with dementia were involved in decision‐making processes. Twenty‐one married couples living at home took part; the recently‐diagnosed were excluded. Qualitative methods ‐including participant observation and interviews ‐ were used to examine the couples’ fiscal management and decision‐making‐processes, the perceptions of people with dementia and their spouses about their current financial abilities and whether any support provided by spouse‐carers influenced their partners’ financial capacity. The fieldwork was undertaken in the North of England between June 2010 and May 2011. Thematic analysis of the data showed that social factors influenced the perceived capacity of people with dementia and the financial practices adopted by the couples. In particular, gender influenced whether people with dementia were involved in financial decisions. The research demonstrated that non‐cognitive factors need to be taken into account when assessing and facilitating the capacity of people with dementia. In addition, as people with dementia were somewhat marginalised in decisions about designating financial authority (Lasting Power of Attorney), spouse‐carers may need guidance on how to undertake advance care planning and how to support their relatives with dementia in major decision‐making, particularly when there are communication difficulties.     

The use of evidence by health care user organizations

Objectives To explore the use of research evidence by consumer and patient organizations and the extent to which their goals and activities are consistent with evidence-based health care and patient-centred care.
Design A mailed survey, telephone and face-to-face interviews of leaders of organizations representing health care users.
Setting Norway.
Participants Sixty-nine of 109 questionnaires that were mailed were included in our analysis and approximately 20 interviews were conducted with representatives of general consumer and patient advocacy groups and interest groups that focus on particular diseases or disabilities.
Measurements Information was collected on the goals of the organizations, the nature of their everyday work, the extent to which research information is required in this work and how research information is accessed and appraised.
Results An important focus of many user groups is peer support. They tend to emphasize experience-based knowledge. A total of 82% of the respondents said that they often or sometimes had use for research results in their work. Research-based information is most often obtained indirectly through physicians or researchers.
Conclusions Norwegian health care user organizations do not appear to promote evidence-based health care. To the extent that they help to disseminate scientific information, they appear to do so uncritically, relying on few sources and traditional authorities.     

Achieving involvement: process outcomes from a cluster randomized trial of shared decision making skill development and use of risk communication aids in general practice

BACKGROUND: A consulting method known as 'shared decision making' (SDM) has been described and operationalized in terms of several 'competences'. One of these competences concerns the discussion of the risks and benefits of treatment or care options-'risk communication'. Few data exist on clinicians' ability to acquire skills and implement the competences of SDM or risk communication in consultations with patients. OBJECTIVE: The aims of this study were to evaluate the effects of skill development workshops for SDM and the use of risk communication aids on the process of consultations. METHODS: A cluster randomized trial with crossover was carried out with the participation of 20 recently qualified GPs in urban and rural general practices in Gwent, South Wales. A total of 747 patients with known atrial fibrillation, prostatism, menorrhagia or menopausal symptoms were invited to a consultation to review their condition or treatments. Half the consultations were randomly selected for audio-taping, of which 352 patients attended and were audio-taped successfully. After baseline, participating doctors were randomized to receive training in (i) SDM skills or (ii) the use of simple risk communication aids, using simulated patients. The alternative training was then provided for the final study phase. Patients were allocated randomly to a consultation during baseline or intervention 1 (SDM or risk communication aids) or intervention 2 phases. A randomly selected half of the consultations were audio-taped from each phase. Raters (independent, trained and blinded to study phase) assessed the audio-tapes using a validated scale to assess levels of patient involvement (OPTION: observing patient involvement), and to analyse the nature of risk information discussed. Clinicians completed questionnaires after each consultation, assessing perceived clinician-patient agreement and level of patient involvement in decisions. Multilevel modelling was carried out with the OPTION score as the dependent variable, and rater, consultation and clinician levels of data, standardized by rater within clinician. RESULTS: Following each of the interventions, the clinicians significantly increased their involvement of patients in decision making (OPTION score increased by 10.6 following risk communication training [95% confidence interval (CI) 7.9 -13.3; P < 0.001] and by 12.9 after SDM skill development (95% CI 10 -15.8, P < 0.001), a moderate effect size. The level of involvement achieved by the risk communication aids was significantly increased by the subsequent introduction of the skill development workshops (7.7 increase in OPTION score, 95% CI 3.4-12; P < 0.001). The alternative sequence (skills followed by risk communication aids) did not achieve this effect. The use of most risk information formats increased after the provision of specific risk communication aids (P < 0.001). Clinicians using the risk communication tools perceived significantly higher patient and clinician agreement on treatment (P < 0.001), patient satisfaction with information (P < 0.01), clinician satisfaction with decision (P < 0.01) and general overall satisfaction with the consultation (P < 0.001) than those who were exposed to SDM skill development workshops. CONCLUSIONS: These clinicians were able to acquire the skills to implement SDM competences and to use risk communication aids. Each intervention provided independent effects. Further progress towards greater patient involvement in health care decision making is possible, and skill development in this area should be incorporated into postgraduate professional development programmes.     

Reframing risk management in dementia care through collaborative learning

Risk management is a complex aspect of practice which can lead to an emphasis on maintaining physical safety, which impacts on the well-being of people with dementia. Education for practitioners in risk management is particularly challenging because of its conceptual nature and diverse perceptions of risk between and within professional groups. The practice development research reported here formed one part of a multisite study and contributed to developing a risk assessment and management framework for use by practitioners in partnership with people with dementia and their families. Practice development research uses learning theories in the process of the research, and in so doing its intent is to not only create new knowledge but to view the research process as also a process of learning for those involved. Twenty practitioners from varying professions participated in five Collaborative Learning Groups, each of at least 2 hours duration, which were held over a 7-month period. Data analysis highlighted contradictions in the care system and in the professional's intention to practice in a person-centred way. These were expressed through the themes of: Seeking Certainty; Making Judgements; Team Working; Managing Complexity; Gathering and Using Information.     

Best Methods of Communicating Clinical Trial Data to Improve Understanding of Treatments for Patients with Multiple Sclerosis

Background

Patients’ understanding of treatment risks and benefits is a prerequisite for shared decision making. Yet, patients with multiple sclerosis (MS) do not accurately understand treatment information provided in regular clinical consultations.

Values and risks of second opinion in Japan's universal health‐care system

Background

Second opinion (SO) is widely recognized in Japan, but we do not know how patients view and use SO.

Objectives

To investigate optimum seeking of SO in Japan''s universal health‐care system.

Design, participants, and methods

Survey of patients at Tokyo Medical and Dental University Hospital. Of 365 responses, 67 had experienced SO with standardized protocol at SO Clinic; 82 had obtained SO elsewhere without instruction; 216 had never sought SO.

Main outcome measures

Views of values and risks of SO.

Results

Second opinion patients with standardized protocol better understood their illness, treatment options, individualized plan, and uncertainty in medicine, and also reported improved decision making compared with SO patients without the protocol (P < 0.05). However, more than half of respondents misunderstood SO as a way to change doctors or treatment. Second opinion respondents (n = 149) had a propensity to request treatment changes (P < 0.1) and more than one‐third (n = 82) did not tell SO doctor they were being treated by another doctor. The absolute majority of non‐SO patients would seek SO for a serious illness but would hesitate to tell their doctors.

Discussion and conclusion

Respondents recognized value of SO to improve understanding and decision making. This study also found risks in SO misuse which may be reinforced by Japan''s cultural tendencies and universal health‐care system. Our findings suggest steps to increase the benefit of SO: ensure involvement of original doctor, instruct patients about SO and help them organize their thinking before SO and facilitate patients'' return to the treating doctor for discussion and decision making.