‘You likes your way,we got our own way’: Gypsies and Travellers’ views on infant feeding and health professional support

Background

Gypsies and Travellers are known to have poor health status and access to health services, even in comparison with other ethnic minority groups. People from this stigmatized ethnic group are rarely consulted about their health needs or health service provision. Optimal infant feeding in the first year of life has the potential to improve lifelong health.

Objective

The aim of this study was to explore mothers and grandmothers’ views on feeding in the first year of life, including the support provided by health professionals.

Methods

Semi‐structured interviews were conducted with a purposively selected sample of 22 mothers and grandmothers of English Gypsy, Irish Traveller and Romanian Roma ethnicity between November 2011 and February 2012 in a city in south‐west England.

Results

Few women perceived themselves as requiring help from health professionals in infant feeding, as acceptable and accessible support was available from within their own communities. Roma mothers described a tradition of breast‐feeding and appropriately timed weaning, while English Gypsies and Irish Travellers customarily practised less healthy infant feeding. When mothers requested support, health service provision was often found inadequate.

Conclusion

Exploring the views of Gypsies and Travellers is important to gain insight into the provision of health services for this marginalized ethnic group. This study has implications for policy and the practice of health professionals, in indicating the customary feeding behaviours of some Gypsy and Travellers, and highlighting areas meriting culturally sensitive health promotion.     

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.     

‘You don't get told anything,they don't do anything and nothing changes’. Medicine as a resource and constraint in progressive ataxia

Background

Progressive ataxias are neurological disorders affecting balance, co‐ordination of movement and speech.

Objective

A qualitative study was undertaken to discover patients'' experiences of ataxia and its symptoms.

Participants

Thirty‐eight people with ataxia recruited from patient support groups and two hospital outpatients departments.

Design

Cross‐sectional qualitative study with thematic analysis.

Results

These accounts highlight the limits of medicine in the context of a rare, incurable and disabling disorder, and the embodied uncertainties brought by slowly progressive diseases that lie at the boundaries of mainstream medical knowledge. The existential crises faced by people with ataxia are seemingly magnified by sometimes idiopathic aetiologies and the limited number of inherited conditions identifiable by the available genetic tests. Interviewees were drawn into a medical system that was focused mainly on the diagnosis process, with widely varying results. However, when asked, most had rather valued the provision of disability aids and physical therapies. Only one informant reported overcoming the myriad uncertainties of progressive ataxia, and their account supported the notion of ‘biographical repair’ in chronic illness.

Conclusions

Clinical uncertainties in ataxia constrained people''s attempts to deal with their condition. The construction of the proactive, informed, medical consumer who is assumed to be a partner in care is problematic in the context of a rare and difficult‐to‐diagnose disease for which there is usually no cure. Service providers should be mindful of the need to manage patient expectations in relation to diagnosis and cure. More focus might usefully be placed on the provision of physical therapies and disability aids.     

In search of compassion: a new taxonomy of compassionate physician behaviours

Background

Compassion has been extolled as a virtue in the physician–patient relationship as a response to patient suffering. However, there are few studies that systematically document the behavioural features of physician compassion and the ways in which physicians communicate compassion to patients.

Objective

To develop a taxonomy of compassionate behaviours and statements expressed by the physician that can be discerned by an outside observer.

Design

Qualitative analysis of audio‐recorded office visits between oncologists and patients with advanced cancer.

Setting and Participants

Oncologists (n = 23) and their patients with advanced cancer (n = 49) were recruited in the greater Rochester, New York, area. The physicians and patients were surveyed and had office visits audio recorded.

Main Outcome Measures

Audio recordings were listened to for qualitative assessment of communication skills.

Results

Our sensitizing framework was oriented around three elements of compassion: recognition of the patient''s suffering, emotional resonance and movement towards addressing suffering. Statements of compassion included direct statements, paralinguistic expressions and performative comments. Compassion frequently unfolded over the course of a conversation rather than being a single discrete event. Additionally, non‐verbal linguistic elements (e.g. silence) were frequently employed to communicate emotional resonance.

Discussion and Conclusions

This study is the first to systematically catalogue instances of compassionate communication in physician‐patient dialogues. Further refinement and validation of this preliminary taxonomy can guide future education and training interventions to facilitate compassion in physician–patient interactions.     

A patient perspective of pharmacist prescribing: ‘crossing the specialisms‐crossing the illnesses’

Background

The drive for non‐medical prescribing has progressed quickly since the late 1990s and involves a range of healthcare professionals including pharmacists. As part of a commissioned research project, this qualitative element of a larger case study focused on the views of patients of pharmacist prescribers.

Objective

The aim of this study was to explore patients'' perspectives of pharmacists as prescribers.

Methods

Three pharmacists working as independent prescribers in the clinical areas of (i) hypertension, (ii) cardiovascular/diabetes management, (iii) anticoagulation were recruited to three case studies of pharmacist prescribing in Northern Ireland. One hundred and five patients were invited to participate in focus groups after they had been prescribed for by the pharmacist. Focus groups took place between November 2010 and March 2011 (ethical/governance approvals granted) were audio taped, transcribed verbatim, read independently by two authors and analysed using constant comparative analysis.

Results

Thirty‐four patients agreed to participate across seven focus groups. Analysis revealed the emergence of one overarching theme: team approach to patient care. A number of subthemes related to the role of the pharmacist, the role of the doctor and patient benefits. There was an overwhelming lack of awareness of pharmacist prescribing. Patients discussed the importance of a multidisciplinary approach to their care and recognized limitations of the current model of prescribing.

Conclusion

Patients were positive about pharmacist prescribing and felt that a team approach to their care was the ideal model especially when treating those with more complex conditions. Despite positive attitudes, there was a general lack of awareness of this new mode of practice.     

‘Too much for one day’: a case study of disclosure in the paediatric HIV/AIDS clinic

Background

Despite acknowledgement of the complexity and challenges of the process of disclosure of HIV status to adolescents, little work has been carried out on the communication features which facilitate or hinder the process. This qualitative case study reflects the interactional dynamics of an interaction between caregiver, physician and counsellor around the topic of disclosure in a South African clinic.

Methods

A 40‐minute encounter between a doctor, the grandmother of an adolescent with HIV/AIDS and a counsellor around the process of disclosure was transcribed and examined in detail in relation to its structure, topics, timing and sequence as well as its movement towards a collaborative ending. Analysis was based on elements of conversational and thematic analysis.

Results

The session was characterized by distinct stages and the emergence of multiple voices and perspectives from the participants. The negotiated management of the session sheds light on multiple barriers to care as well as the influence of contextual factors on the process. The important mediating role of the counsellor in the triad emerges. The analysis highlights both unique features of the consultation and common challenges to clinicians when disclosing.

Discussion and Conclusions

The task of disclosure is complex and intricate. Results suggest team processes are critical, as are temporal and contextual factors and the need for an understanding of communication. Implications for the clinic team are discussed and suggestions made for the development of collaborative partnership based on an understanding of roles and responsibilities, time factors and enhancement of features such as trust and communication.     

The politics of patient‐centred care

Background

Despite widespread belief in the importance of patient‐centred care, it remains difficult to create a system in which all groups work together for the good of the patient. Part of the problem may be that the issue of patient‐centred care itself can be used to prosecute intergroup conflict.

Objective

This qualitative study of texts examined the presence and nature of intergroup language within the discourse on patient‐centred care.

Methods

A systematic SCOPUS and Google search identified 85 peer‐reviewed and grey literature reports that engaged with the concept of patient‐centred care. Discourse analysis, informed by the social identity approach, examined how writers defined and portrayed various groups.

Results

Managers, physicians and nurses all used the discourse of patient‐centred care to imply that their own group was patient centred while other group(s) were not. Patient organizations tended to downplay or even deny the role of managers and providers in promoting patient centredness, and some used the concept to advocate for controversial health policies. Intergroup themes were even more obvious in the rhetoric of political groups across the ideological spectrum. In contrast to accounts that juxtaposed in‐groups and out‐groups, those from reportedly patient‐centred organizations defined a ‘mosaic’ in‐group that encompassed managers, providers and patients.

Conclusion

The seemingly benign concept of patient‐centred care can easily become a weapon on an intergroup battlefield. Understanding this dimension may help organizations resolve the intergroup tensions that prevent collective achievement of a patient‐centred system.     

Patients' and clinicians' experiences and perceptions of the primary care management of insomnia: qualitative study

Background

Insomnia is common leading to patients with sleep problems often presenting to primary care services including general practice, community pharmacies and community mental health teams. Little is known about how health professionals in primary care respond to patients with insomnia.

Aim

We aimed to explore health professionals'' and patients'' experiences and perceptions of the management of insomnia in primary care.

Design

We used a qualitative design and thematic approach.

Setting

Primary care in Nottinghamshire and Lincolnshire.

Method

We undertook focus groups and one‐to‐one interviews with a purposive sample of health professionals and adults with insomnia.

Results

We interviewed 28 patients and 23 health professionals. Practitioners focused on treating the cause of insomnia rather than the insomnia itself. They described providing stepped care for insomnia, but this focused on sleep hygiene which patients often disregarded, rather than cognitive behavioural therapy for insomnia (CBT‐I). Practitioners were ambivalent towards hypnotic drugs but often colluded with patients to prescribe to avoid confrontation or express empathy. Patients sometimes took hypnotics in ways that were not intended, for example together with over‐the‐counter medication. Practitioners and patients were sometimes but not always concerned about addiction. Practitioners sometimes prescribed despite these concerns but at other times withdrew hypnotics abruptly without treating insomnia. Both patients and practitioners wanted more options and better training for the management of insomnia in primary care.

Conclusion

A better understanding of the current approaches and difficulties in the management of insomnia will help to inform more therapeutic options and health professional training.     

Lay people's interpretation of ethical values related to mass vaccination; the case of A(H1N1) vaccination campaign in the province of Quebec (French Canada)

Background

Pandemic influenza ethics frameworks are based on respect of values and principles such as regard for autonomy, responsibility, transparency, solidarity and social justice. However, very few studies have addressed the way in which the general population views these moral norms.

Objectives

(i) To analyse the receptiveness of the population of French‐speaking Quebecers to certain ethical principles promoted by public health authorities during the AH1N1 vaccination campaign. (ii) To add to the limited number of empirical studies that examine the population''s perception of ethical values.

Design

Eight months after the end of the AH1N1 vaccination campaign in the Province of Quebec (Canada), 100 French‐speaking Quebecers were assembled in ten focus groups. Discussions focussed on the level of respect shown by public health authorities for individual autonomy, the limits of appeals for solidarity, the balance between vaccination efficiency and social justice towards non‐prioritized subpopulations, vaccination as a demonstration of civic duty and social responsibility.

Results

The population acknowledged a high level of individual responsibility towards family members and agreed to vaccination to protect children and ageing parents. However, the concepts of civic duty and solidarity did not elucidate unanimous support, despite the fact that social justice stood out as a dominant value of public morals.

Conclusion

The ethical principles promoted in influenza pandemic ethics frameworks are subject to reinterpretation by the population. An ethic of public health must consider their understanding of the fundamental values that legitimize mass vaccination.     

Understanding the business versus care paradox in gambling venues: a qualitative study of the perspectives from gamblers,venue staff and counsellors

Background

In recent years, greater emphasis has been placed on gambling venues to identify potential problem gamblers, respond appropriately and refer to treatment. In seeking the perspectives of problem gamblers, venue staff and treatment providers, this qualitative study investigates how problem gamblers experience being identified and referred for treatment by venue staff.

Methods

A semi-structured interview guide focusing on experiences and perceptions of problem gambling identification and referral for treatment in gaming venues was used to conduct 4 focus groups and 9 semi-structured in-depth interviews. Participants comprised 22 problem gamblers, 10 gambling venue staff and 8 problem gambling counsellors. Audio recordings were transcribed verbatim, and an interpretive phenomenological analysis was conducted.

Results

‘Role conflict’ was identified as a considerable source of stress for venue staff who described conflicting priorities in responding to problem gamblers whilst maintaining employer profit margins. Problem gamblers described offers of help from venue staff as hypocritical and disingenuous. Venue staff also described reluctance to make moral judgements through the identification of and engagement with problem gamblers, and gamblers described resentment in being singled out and targeted as a problem gambler. Being approached and offered referral to a counselling service was a rare occurrence among problem gamblers. This corresponded with reports by gambling counsellors.

Conclusions

Role conflict experienced by gambling venue staff and patrons alike inhibits effective referral of potential problem gamblers into treatment. Reducing the need for gambling venue staff to make a perceived moral judgement about the gambling behaviours of specific patrons may improve the reception of responsible gambling information and promote help-seeking.

     

‘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.     

‘No one wants to be the face of Herpes London’: a qualitative study of the challenges of engaging patients and the public in sexual and reproductive health and HIV/AIDS services

Objectives

To explore barriers, challenges and best practice within patient and public engagement (PPE) in sexual and reproductive health and HIV (SRHH) services in London.

Methods

Consultation exercise using qualitative interviews with 27 stakeholders including commissioners, managers, voluntary/community organizations (VCOs) clinicians and patients, analysed using Framework Analysis and Atlas.ti software.

Results

Participants recognized PPE''s importance, echoing recent political and NHS drives, and highlighted the need for meaningful, empowering PPE, including user‐designed methods, peer research and participatory approaches. Although challenging in SRHH and requiring training and support, PPE may help tackle stigma, and promote self‐management and patient‐centred‐care, including peer education and role modelling. Expertise may come from experienced VCOs. Themes in priority order were: organizational commitment (including lack of dedicated staff, time and money); motivating patients; changing NHS philosophy; informing patients/public; using public awareness/education campaigns; overcoming stigma; working with VCOs. ‘Reaching out’ to engage underrepresented groups in this sensitive area was emphasized through community outreach, incentivization and linking with existing organizations. Making engagement easy and addressing issues of public value were also important. Stigma was less hindering than anticipated, except for ethnic minorities. PPE was seen to improve patient satisfaction, increase service uptake and reduce inequalities, key priorities in SRHH, and identify innovative service delivery ideas.

Conclusions

PPE is crucial in creating a patient‐led NHS and responsible society. If organizations, including the NHS, commit to implementing meaningful PPE which actively targets those at risk of poor SRHH, services can be truly patient‐led and patients and communities empowered to tackle the stigma of SRHH.     

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.     

Patient perceptions of patient‐centred care: empirical test of a theoretical model

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.     

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.     

An exploration of patient and family engagement in routine primary care visits

Background

Older adults are commonly accompanied to routine medical visits. Whether and how family companion behaviours relate to visit processes is poorly understood.

Objective

To examine family companion behaviours in relation to older adults'' medical visit processes.

Design and participants

Observational study of 78 accompanied primary care patients ages 65 and older.

Main outcome measures

Medical visit communication (coded using RIAS), patient verbal activity (as a proportion of visit statements) and visit duration (in min), from audio recordings.

Results

Companions'' facilitation of patient involvement was associated with greater patient question asking (P = 0.017) and orienting statements, less passive agreement (P = 0.004) and social talk (P = 0.013) and visits that were 3.4 min longer (P = 0.025). Facilitation of patient understanding was associated with less physician question asking (P = 0.004), visits that were 3.0 min longer (P = 0.031), and lower patient verbal activity (30.3% vs. 36.9% of visit statements; P = 0.028). Facilitation of doctor understanding was associated with greater patient biomedical information giving (P = 0.049). Autonomy detracting behaviours were not associated with visit duration but were associated with lower levels of patient verbal activity (36.3% vs. 29.1% of visit statements; P = 0.041). When companions assumed more behaviours, medical visits were incrementally longer (16.1, 19.5, 21.7 min, corresponding to 0–1, 2–4 and 5+ behaviours; P < 0.001 both contrasts), and patients were less verbally active (35.6%, 33.9%, 27.1% of visit statements; P = 0.09 and P = 0.009, respectively).

Discussion

Behaviours assumed by patients'' companions were associated with visit communication, patient verbal activity and visit duration.

Conclusions

Interventions to capitalize on family companions'' presence may benefit medical visit processes.