What factors influence older adults to discuss falls with their health‐care providers?

Objective

To identify from the older adults'' perspective, the factors associated with discussion about falls with their general practitioners and other health professionals and the factors associated with initiation of these discussions. We explored the content of and barriers to discussion about falls.

Methods

A prospective cohort study where a baseline cross‐sectional survey was followed by a survey 1 year later. Survey domains were drawn from constructs of behavioural change models. Data from 245 older community dwellers in Victoria, Australia, in the follow‐up survey were used for this study. Survey format consisted of yes and no responses, Likert scale and open/closed‐ended responses.

Results

Few older adults talked with and initiated a talk with their health‐care providers about falls in the follow‐up period. Multiple regression showed anxiety or depression [OR = 2.78, 95% CI (1.21–6.41)], chronic medical conditions such as diabetes [OR = 2.71, 95% CI (1.19–6.17)] and having a self‐reported fall in the last 12 months [OR = 4.26, 95% CI (2.16–8.41)] were associated with discussion of falls with general practitioners. Higher perception of risk of sustaining a serious injury from falling [OR = 1.49 (1.03–2.13)] was associated with discussion about falls with other health professionals. Participants discussed various topics of falls with their health‐care providers. Different barriers to discussion about falls were identified.

Conclusion

Health‐care providers should routinely discuss falls prevention with older adults. Dissemination of evidence‐based advice and followed up with referral during consultations, particularly in general practitioners could advance falls prevention practice. The results could help to develop a conceptual framework to predict the likelihood of falls discussion.     

Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument

Background

We have no clear overview of the extent to which health‐care providers involve patients in the decision‐making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this.

Objective

To systematically review studies that used the OPTION instrument to observe the extent to which health‐care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation.

Search strategy

We conducted online literature searches in multiple databases (2001–12) and gathered further data through networking.

Inclusion criteria

(i) OPTION scores as reported outcomes and (ii) health‐care providers and patients as study participants. For analysis, we only included studies using the revised scale.

Data extraction

Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting.

Main results

We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient‐involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0–100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15).

Conclusions

Whatever the clinical context, few health‐care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.     

‘The onus is on me’: primary care patient views of Medicare‐funded team care in chronic disease management in Australia

Background and objective

This study investigated the views of primary care patients in receipt of Medicare‐funded team care for chronic disease management (CDM) in Australia.

Design

A qualitative study using a repeat in‐depth interview design.

Participants and setting

Twenty‐three patients (17 female), aged 32–89, were recruited over a six‐month period from two purposively selected general practices: one urban and one regional practice in Queensland, Australia.

Data collection procedure

Semi‐structured interviews were conducted with participants 6 months apart. An interview guide was used to ensure consistency of topics explored. Interviews were recorded and transcribed, and a thematic analysis was conducted.

Results

Patients in this study viewed the combined contributions of a GP and other health professionals in team care as thorough and reassuring. In this case of Medicare‐funded team care, patients also saw obligations within the structured care routine which cultivated a personal ethics of CDM. This was further influenced by how patients viewed their role in the health‐care relationship. Aside from personal obligations, Medicare funding got patients engaged in team care by providing financial incentives. Indeed, this was a defining factor in seeing allied health professionals. However, team care was also preferential due to patients'' valuations of costs and benefits.

Conclusion

Patients are likely to engage with a structured team care approach to CDM if there is a sense of personal obligation and sufficient financial incentive. The level of engagement in team care is likely to be optimized if patient expectations and preferences are considered in decisions.     

What primary health‐care services are Australian consumers willing to accept from nurse practitioners? A National Survey

Background

Nurses are becoming increasingly important as providers of primary health care in Australia. In November 2010, Medicare provider rights and Pharmaceutical Benefits Scheme rights for nurse practitioners, working in private practice and in collaboration with a medical practitioner, were introduced in Australia. Although international evidence suggests that nurse practitioners would be appropriate and acceptable providers of care at the first point of contact, such as primary health care, there is little Australian evidence about what care consumers are willing to accept from nurse practitioners.

Objectives

To ascertain what care Australian health‐care consumers would accept from nurse practitioners in this setting.

Participants

Australian adults over 18 years of age.

Methods

National Survey delivered online. Information about the survey was disseminated through a media campaign, stakeholder engagement and through the health‐care consumer networks nationally.

Results

The total number of respondents that started the survey was n = 1883. Ninety‐five percentage (n = 1784) of respondents completed the survey. The majority of respondents were women, aged 25–54 years, had completed tertiary education and had an annual household income of more than A$80 000. The majority of the respondents (n = 1562, 87%) said they would be prepared to see a nurse practitioner for some of their primary health‐care needs.

Conclusions

The findings of this study suggest consumers are accepting of a range of activities undertaken by nurse practitioners in primary health care and this has relevance for primary health‐care workforce mix and organization, particularly for areas that are underserved by medical practitioners.     

Having diabetes and having to fast: a qualitative study of British Muslims with diabetes

Background

There are approximately 2.7 million Muslims in the UK, constituting 4.8% of the population. It is estimated that 325 000 UK Muslims have diabetes. Whilst dietary practices of Muslims with diabetes have been explored, little work has described the beliefs and decisions to fast during Ramadan, whereby Muslims with diabetes refrain from eating, drinking and taking medication between sunrise and sunset.

Objective

To explore beliefs and experiences of fasting during Ramadan of Muslim respondents with diabetes and their perceptions of the role played by their general practitioner (GP) and/or practice nurse (PN) in supporting them.

Design

Qualitative study.

Setting

General practices and community groups located in Greater Manchester.

Participants

23 South Asian Muslims.

Methods

Semi‐structured interviews were conducted as part of the Collaboration of Applied Health Research and Care (CLAHRC) programme, Greater Manchester. Respondents were recruited using random and purposive sampling techniques. Interviews were analysed thematically using a constant comparison approach.

Results

Thirteen respondents reported they fasted and altered diabetes medication and diet during Ramadan. The decision to fast was influenced by pressures from the family and the collective social aspect of fasting, and respondents made limited contact with primary care during fasting.

Conclusion

Tensions exist between the respondent''s personal desire to fast or not fast and their family''s opinion on the matter, with a strong reluctance to disclose fasting to GP and/or PN. Future research needs to explore whether GPs or PNs feel competent enough to support patients who wish to fast.     

Perceptions and attitudes towards exercise among Chinese elders – the implications of culturally based self‐management strategies for effective health‐related help seeking and person‐centred care

Background

Encouraging the uptake of physical activity among a culturally diverse elderly population presents a challenge for health‐care providers across the world. Little is known about the health‐care needs of these populations, for example the increasingly ageing group of Chinese elders in many parts of the world who are now facing later life and increasing challenges to their health.

Objective

This study aimed to explore behaviours and attitudes towards exercise among older Chinese immigrants in the UK to provide insights into the health of Chinese populations in the UK and elsewhere.

Design

A Grounded Theory approach using purposive and theoretical sampling with in‐depth semi‐structured interviews.

Setting and participants

Chinese elders were recruited from Chinese communities in the North West of England. Thirty‐three participants were interviewed face‐to‐face and audio‐recorded.

Results

Participants self‐managed exercise based on cultural perceptions of health and ingrained Chinese values. Professional support and information was lacking and relied on folk norms rather than person‐centred recommendations for healthy living. Inappropriate exercise regimes could act as a substitute for seeking health‐related advice when exercise was often used as a self‐monitored barometer to assess their perceived health status.

Discussion and conclusion

Chinese elders may undertake inappropriate exercise, leading to high‐risk situations, if appropriate professional information is not provided. Health‐care practitioners should devote attention to understanding Chinese elders'' attitudes towards exercise, as this may ultimately lead to successful health promotion activities. A person‐centred approach that acknowledges and works with self‐management practices is advocated.     

Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ)

Context

Existing measurements of patient preferences cover only a limited range of health information and participation in decision making. A broader approach is necessary to understand the breadth and variations in patient preferences.

Objective

To explore the breadth and variances in patient preferences for health information and participation in decision making and to understand the relationship between age and each type of preference.

Design

The Health Information Wants Questionnaire (HIWQ) was administered during May–December 2010 to gather data about the information and corresponding decision‐making autonomy participants would want in seven areas: diagnosis, treatment, laboratory tests, self‐care, complementary and alternative medicine (CAM), psychosocial factors and health‐care providers.

Setting

A large state university, public libraries and senior centres in Maryland, USA.

Participants

A convenience sample of 438 individuals, including 226 undergraduates (mean age = 20; SD = 2.15) and 212 community‐dwelling older adults (mean age = 72; SD = 9.00).

Main Outcome Measures

Ratings on the information and decision‐making items of the HIWQ.

Results

Participants expressed higher levels of preference for information than for participation in decision making on six of seven subscales. On the psychosocial subscale, they expressed stronger desire for participation in decision making than for information. Age had no predictive effect on the overall preferences or specific preferences for information and participation in decision making about standard treatments and CAM. The predictive effect of age on the other types of preferences varied significantly.

Conclusions

Physicians should take into account the breadth and variations in patient preferences. The predictive effect of age on patient preferences varied depending on the specific area of preferences.     

A systematic review of research into black and ethnic minority patients' views on self‐management of type 2 diabetes

Context

Eliciting patients'' views of type 2 diabetes self‐management provides insights on how policy and services might better support the needs of this population.

Objective

To synthesize black and ethnic minority patients'' views on the barriers and facilitators influencing the self‐management of type 2 diabetes.

Search strategy

A systematic search of international literature published in nine electronic databases was undertaken in 2008. Search strategies used both MeSH and free‐text terms. Two relevant journals were also hand searched.

Inclusion criteria

Any primary empirical study published in the English language since 1986 that reported black and ethnic minority patients'' views on type 2 diabetes self‐management.

Data extraction and synthesis

Data were extracted and study quality was formally assessed. Data were analysed using thematic synthesis.

Main results

Fifty‐seven studies were included, of qualitative (n = 54), mixed‐method (n = 2) or quantitative (n = 1) design. Studies were from North America (n = 41), Europe (n = 14) and Australia (n = 2), including 1735 participants in total. Three analytical themes emerged: ‘Importance of identity’; ‘Being understood by others’ and ‘Making sense of condition’, all linked conceptually under the overarching theme ‘Sense of self’. The quality of the studies varied.

Discussion and conclusions

The findings provide insight into what black and minority ethnic people regard as the barriers to, and facilitators of self‐management, as opposed to what health professionals, policy makers and trial researchers may have assumed. Recognition of the views of people with diabetes is essential for the design and delivery of patient‐centred care and policies.     

Self‐management and skills acquisition in boys with haemophilia

Background

There is an increasing prevalence of children/young people with long‐term conditions (LTC) in the UK due to improvements in health‐care management and delivery. These children are often involved, from an early age, in their own care and management; yet, there are little data to support how or when they develop the necessary skills and knowledge to become competent at this care.

Objective

This study aimed to understand self‐management of haemophilia, from a child''s perspective, in the 21st century in the UK where intensive prophylactic therapy is given from early childhood.

Design

A qualitative study using grounded theory to evaluate life‐experiences of children and young people with haemophilia.

Setting and participants

Thirty boys aged 4–16 with severe haemophilia treated at a single paediatric haemophilia care centre were interviewed at home or in a focus group.

Intervention/variables

Multimethod qualitative research including age‐appropriate research tools (draw and write, photo‐elicitation and interviews) to facilitate data collection from children.

Results

Boys develop self‐management skills over time. They learn from health‐care professionals, their parents and other family members with haemophilia.

Discussion

Self‐management skills (bleed recognition, self‐infusion, self and medicines management, pain and risk management and conceptualizing preventative therapy) are developed through experiential learning and individualized education, and not through formalized expert patient programmes.

Conclusion

The boys in this study have benefited from early prophylactic factor replacement therapy. They develop skills in haemophilia and self‐management at a relatively young age and are experts in their own haemophilia care.     

Patients' lay expertise in chronic self‐care: a case study in type 1 diabetes

Background

The impact of chronic diseases in our society is growing. The idea of self‐care generates understandable enthusiasm and is seen as a natural answer. It is important to develop an understanding of self‐care practices that goes beyond a clinical understanding of the disease and that acknowledges everyday practicalities, and the perspective of the patient.

Objective

To shed light on some of the practicalities of everyday chronic self‐care, to expose to analysis the key role of lay expertise and to stress the importance of its recognition in future chronic care practices and technology.

Design

Ethnomethodological investigations based on observations of a patient support group (10 months) and some shadowing sessions of everyday practices, semi‐structured interviews with individuals with type 1 diabetes (n = 14) and professional caregivers (n = 7).

Analysis

The qualitative data analysis was inspired by grounded theory and aimed at ordering data under emerging categories and topics.

Results

The patient''s knowledge and expertise is critical to grounding, integrating and complementing technical‐medical/clinical knowledge in everyday chronic self‐care. To deal with the intricacies and difficulties of everyday chronic self‐care, individuals with type 1 diabetes develop different ways of knowing and dealing with the disease that need to be equally taken into account in the reorganization of care delivery, and in the design of the tools to support it.

Conclusion

Rethinking the traditional separation between hard and soft data may be a possible first step towards rethinking the role of lay expertise in chronic care towards better supports for self‐care practices and patient empowerment.     

Room for improvement: complementary therapy users and the Australian health system

Context

People with chronic conditions who are often in contact with the health‐care system are well placed to reflect on how services meet their needs. Some research characterizes people who use complementary and alternative medicines (CAMs) as a distinct group who opt out of the mainstream health system. However, many CAM users are people with chronic or terminal health conditions who concurrently use mainstream health‐care services. The difference in perspectives between people with chronic conditions who do or do not use CAM has received little attention by researchers.

Objective

To explore the views of CAM users with chronic conditions and identify their perspectives on the health system.

Design and Setting

In‐depth interviews and a self‐administered questionnaire were used to collect data on care‐seeking, self‐management and CAM use among people with type 2 diabetes and/or cardiovascular disease living in Victoria, Australia.

Results

One in four CAM practitioner users was partly motivated to use CAM as a result of their dissatisfaction with the mainstream health system. In general, their dissatisfaction mirrored the concerns of the general population. This included the perceived lack of a humanistic or person‐centred approach, which was central to problems relating to individuals'' clinical encounters as well as to health system design.

Discussion and Conclusion

Participants'' concerns suggest room for improvement in the Australian health system to better reflect patients'' needs. A systems approach is needed to reorient health‐care practitioners to modify the organization of care because of the incentives embedded in the structure of the health‐care system.     

Aiming for inclusion: a case study of motivations for involvement in mental health‐care governance by ethnic minority users

Objective

To examine the motivations for involvement in mental health‐care governance by socially disadvantaged ethnic minority users.

Design and setting

A qualitative case study approach was employed to investigate the involvement of minority north‐eastern users in mental health‐care governance at CAPS Pedro Pellegrino in Rio de Janeiro, Brazil. Semi‐structured interviews with minority Northeasterners (n = 12) and institutional stakeholders (n = 26) were complemented by participant observation of user assembly and user movement meetings.

Findings

Minority Northeasterners express both individual and collective motivations for involvement in mental health‐care governance. Individual motivations include the desire to increase social interaction, acquire meaningful social roles and overcome the stigma attached to mental illness. Collective motivations include the intent to improve the responsiveness of mental health care and achieve social justice for people with mental problems. Taken together, these motivations demonstrate a strong aspiration by users to promote their social inclusion and the inclusion of others who also experience marginalization. Results also reveal that the involvement of long‐term participants is driven mostly by collective goals while early‐stage participants focus predominantly in dealing with individual concerns. This is at odds with the mutual incentives theory, which postulates that collective motivations prevail over individual motivations in explaining user involvement.

Conclusion

Groups historically excluded from decision‐making processes may identify social inclusion as the core goal of their involvement. Initiatives aiming to increase user participation in health‐care governance must address the range of motivations driving the involvement of users, instead of focusing solely on issues related to health‐care management and provision.     

Heart failure patients' descriptions of participation in structured home care

Background

To strengthen the patient''s position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self‐care is an important part of disease management and participation is crucial to succeed with this.

Objective

To examine how heart failure patients receiving structured home care described participation in the care.

Design

Qualitative study.

Setting and participants

Thirteen men and six women, aged between 63 and 90 years, were interviewed. The informants received structured home care at four home care units in Sweden. The interviews were analysed using qualitative content analysis.

Results

Five categories with associated subcategories describing participation in care were identified: communication between patients and health‐care professionals (HCPs) including time and space for dialogue and exchange of care‐related information, accessibility to care through awareness of the plan for home visits or feasibility to initiate home visits, active involvement in care by engaging in self‐care and collaboration with HCPs, trustful relation with HCPs, with confidence in competence and individually adapted care, options for decision making, by making decisions or entrusting decisions.

Conclusions

Patient participation could be strengthened through structured home care. Participation was facilitated when there was a balance between the patient''s own preferences to influence care and the health‐care professional''s actions and values and the organization of care. Barriers to participation could depend on the health‐care organization, lack of continuity and confidence in HCPs.     

Convergences and divergences of diabetic patients' and healthcare professionals' opinions of care: a qualitative study

Objectives

To investigate opinions'' convergences and divergences of diabetic patients and health‐care professionals on diabetes care and the development of a regional diabetes programme.

Background

Development and implementation of a regional diabetes programme.

Research design

Qualitative study using focus groups to elicit diabetic patients'' and health‐care professionals'' opinions, followed by content analysis.

Setting and participants

Eight focus groups: four focus groups with diabetic patients (n = 39) and four focus groups with various health‐care professionals (n = 34) residing or practicing in the canton of Vaud, Switzerland, respectively.

Results

Perceived quality of diabetes care varied between individuals and types of participants. To improve quality, patients favoured a comprehensive follow‐up while professionals suggested considering existing structures and trained professionals. All participants mentioned communication difficulties between professionals and were favouring teamwork. In addition, they described the role that patients should have in care and self‐management. Financial difficulties were also mentioned by both groups of participants. Finally, they were in favour of the development of a regional diabetes programme adapted to actors'' needs. For patients indeed, such a programme would represent an opportunity to improve information and to have access to comprehensive care. For professionals, it would help the development of local networks and the reinforcement of existing tools and structures.

Discussion and conclusions

Acknowledging convergences and divergences of opinions of both diabetic patients and health‐care professionals should help the further development of a programme adapted to users'' needs, taking all stakeholders interests and priorities into consideration.     

Drivers of overall satisfaction with primary care: evidence from the English General Practice Patient Survey

Background/objectives

To determine which aspects of primary care matter most to patients, we aim to identify those aspects of patient experience that show the strongest relationship with overall satisfaction and examine the extent to which these relationships vary by socio‐demographic and health characteristics.

Design/setting

Data from the 2009/10 English General Practice Patient Survey including 2 169 718 respondents registered with 8362 primary care practices.

Measures/analyses

Linear mixed‐effects regression models (fixed effects adjusting for age, gender, ethnicity, deprivation, self‐reported health, self‐reported mental health condition and random practice effect) predicting overall satisfaction from six items covering four domains of care: access, helpfulness of receptionists, doctor communication and nurse communication. Additional models using interactions tested whether associations between patient experience and satisfaction varied by socio‐demographic group.

Results

Doctor communication showed the strongest relationship with overall satisfaction (standardized coefficient 0.48, 95% CI = 0.48, 0.48), followed by the helpfulness of reception staff (standardized coefficient 0.22, 95% CI = 0.22, 0.22). Among six measures of patient experience, obtaining appointments in advance showed the weakest relationship with overall satisfaction (standardized coefficient 0.06, 95% CI = 0.05, 0.06). Interactions showed statistically significant but small variation in the importance of drivers across different patient groups.

Conclusions

For all patient groups, communication with the doctor is the most important driver of overall satisfaction with primary care in England, along with the helpfulness of receptionists. In contrast, and despite being a policy priority for government, measures of access, including the ability to obtain appointments, were poorly related to overall satisfaction.     

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.     

Patients' and clinicians' views of comparing the performance of providers of surgery: a qualitative study

Objectives

Comparison of providers'' outcomes is intended to encourage patient choice and stimulate clinicians to improve the quality of their services. Given that success will depend on how patients and clinicians respond, our aim was to explore their views of using outcome data to compare providers.

Method

Qualitative data from six focus groups with patients (n = 45) and seven meetings with surgical clinicians (n = 107) were collected during autumn 2010. Discussions audio‐taped, transcribed and a thematic analysis carried out.

Results

Patients and clinicians confirmed the value of making comparisons of the outcomes of providers publicly available. However, both groups harboured three principal concerns: the validity of the data; fears that the data would be misinterpreted by the media, politicians and commissioners, and the focus should not just be on providers but also on the performance of individual surgeons. In addition, patients felt that information on providers'' outcomes would only ever have a limited impact on their choice because there were other important factors to be taken into account: accessibility, waiting time, the size of the provider and the quality of other aspects such as cleanliness and nursing. Also patients acknowledged the importance of friends'' and relatives'' experiences and that they would seek their GP''s advice.

Conclusions

While comparisons of providers'' outcomes should be available to patients to stimulate improvements in performance, information should be directed principally to hospital clinicians and to GPs. Impact may be enhanced by providing data on individual clinicians rather than providers. The extent to which these findings are generalizable to other areas of health care is uncertain.     

Linking people with long‐term health conditions to healthy community activities: development of Patient‐Led Assessment for Network Support (PLANS)

Objective

To combine insights from service users with long‐term conditions (LTCs) to assist the development of a community referral intervention designed to promote engagement and improve access to health‐relevant resources.

Background

Social deprivation and reduced access to resources have been causally linked with social isolation and the ability to manage LTCs. Participation in meaningful activity has been associated with positive health benefits, and strategies to promote access to community activities have shown some potential to improve outcomes for people with LTCs. This suggests the need to develop an engagement and referral intervention in partnership with service users and community groups as part of mainstream self‐care support.

Method

A series of focus groups and interviews with members of community groups in Greater Manchester designed as an iterative and collaborative approach to elicit the role of personal and community networks that support long‐term condition management (LTCM) to develop a community referral tool.

Results

Participants reported a broad range of resources relevant to LTCM that often went beyond the usual concerns associated with self‐care. This helped to inform a tool (PLANS) to tailor access to types of community‐based resources which can support LTCM.

Conclusions

Understanding the everyday challenges of living with a LTC highlighted the importance of connecting and engaging with localized support for people. In response to this, we developed an intervention (PLANS) which tailors access to local resources based on personal preferences, needs and acceptability to encourage service users to engage with sustainable health choices.     

Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Background

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Objective

The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care?

Setting and participants

Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically.

Results

Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’.

Discussion

Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients'' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients'' cyclic decision‐making patterns and facilitating carer inclusion in decision processes.

Conclusions

The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.     

What do people appreciate in physicians' communication? An international study with focus groups using videotaped medical consultations

Background

The literature shows that the quality of communication is usually determined from a professional perspective. Patients or lay people are seldom involved in the development of quality indicators or communication.

Objective

To give voice to the lay people perspective on what constitutes ‘good communication’ by evoking their reactions to variations in physician communication.

Design

Lay people from four different countries watched the same videotaped standardized medical encounters and discussed their preferences in gender‐specific focus groups who were balanced in age groups.

Setting and participants

Two hundred and fifty‐nine lay people (64 NL, 72 IT, 75 UK and 48 BE) distributed over 35 focus groups of 6–8 persons each.

Main variables studied

Comments on doctors'' behaviours were classified by the GULiVer framework in terms of contents and preferences.

Results

Participants prevalently discussed ‘task‐oriented expressions’ (39%: competency, self‐confident, providing solutions), ‘affective oriented/emotional expressions'' (25%: empathy, listening, reassuring) and ‘process‐oriented expressions'' (23%: flexibility, summarizing, verifying). ‘Showing an affective attitude’ was most appreciated (positive percentage within category: 93%, particularly facilitations and inviting attitude), followed by ‘providing solution’ (85%). Among disfavoured behaviour, repetitions (88%), ‘writing and reading’ (54%) and asking permission (42%) were found.

Conclusions

Although an affective attitude is appreciated by nearly everybody, people may vary widely in their communication needs and preferences: what is ‘good communication’ for one person may be disliked or even a source of irritation for another. A physician should be flexible and capable of adapting the consultation to the different needs of different patients. This challenges the idea of general communication guidelines.