Does implementing a development plan for user participation in a mental hospital change patients' experience? A non‐randomized controlled study

Background

Governments in several countries attempt to strengthen user participation through instructing health‐care organizations to implement user participation initiatives. There is, however, little knowledge on the effect on patients'' experience from comprehensive plans for enhancing user participation in whole health service organizations.

Objective

To investigate whether implementing a development plan intending to enhance user participation in a mental hospital had any effect on the patients'' experience of user participation.

Design, setting and participants

A non‐randomized controlled study including patients in three mental hospitals in Central Norway, one intervention hospital and two control hospitals.

Interventions

A development plan intended to enhance user participation was implemented in the intervention hospital as a part of a larger reorganizational process. The plan included establishment of a patient education centre and a user office, purchase of user expertise, appointment of contact professionals for next of kin and improvement of the centre''s information and the professional culture.

Main outcome measures

Perceptions of Care, Inpatient Treatment Alliance Scale and questions made for this study.

Results

A total of 1651 patients participated. Implementing a development plan in a mental hospital intending to enhance user participation had no significant effect on the patients'' experience of user participation.

Discussions and conclusions

The lack of effect can be due to inappropriate initiatives or challenges in implementation processes. Further research should ensure that initiatives and implementation processes are appropriate to impact the patients'' experience.     

Communication relating to family members' involvement and understandings about patients' medication management in hospital

Background

Many patients with complex health‐care needs are prescribed several medications on a daily basis. With admission to hospital, patients are often placed in a vulnerable position. Family members can therefore play an important role in supporting patients in decision making about managing medications and negotiating communication exchange with health professionals.

Objectives

From the perspective of family members, to explore family members'' involvement with health professionals and patients about how patients'' medications are managed in hospital.

Design

Using an ethnographic design, interviews were conducted with family members of patients admitted to hospital who had at least five medications prescribed in hospital. A purposive sampling approach was used for recruitment. A thematic framework process was used for analysis.

Setting

Interviews took place in four surgical and four medical wards in each of two Australian hospitals.

Results

Forty interviews were conducted with family members in relation to their respective relative''s medications. Family members tended to participate in passive, rather than active or shared decision‐making activities. Those who demonstrated active or shared decision making were extensively involved in managing medications and in addressing problems relating to continuity of care. Communication with health professionals was generally insufficient, despite family members'' keenness to speak with them.

Conclusions

Improved communication is needed between family members, health professionals and patients in hospitals. Greater attention should be played by health professionals in initiating communication proactively. Family members possessed valuable, unique information about patients'' medications that can be utilized to facilitate patient safety.     

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.     

Joint replacement recipients' views about health information privacy

Background

Researchers are concerned about the possibility of restricted access to data as a result of specific consent requirements in privacy legislation, potentially resulting in smaller samples and a lack of representativeness which could bias results. In addition, there is uncertainty about what influences individuals to give consent for the use of their personal health information.

Objective

To measure joint replacement recipients'' health information privacy views and to assess potential predictors of these views.

Design

Cross‐sectional survey.

Setting and participants

Potential joint replacement recipients from two teaching hospitals in London, Ontario, Canada.

Main variables

Age, gender, education, employment status, anticipated joint replacement, and expectations for surgery.

Main outcome measures

Privacy concerns as measured by the Concern Scale.

Results

The response rate was 182/253 or 72%. The mean Concern score was 143.9/235.0 for the total sample (range = 82–216). Women had higher levels of privacy concerns than men on slightly over half of the individual questionnaire items. In women, surgical joint, age and employment explained 15% of the variance in concerns about personal health information privacy (P = 0.001). The model explained 6% of the variance in concerns in men (P = 0.138) and was not statistically significant.

Discussion and conclusion

This study indicates that demographic characteristics and health‐care experiences play a role in the variability of health information privacy concerns. A greater understanding of patients'' privacy views about health information could lead to a greater harmonization among privacy rules, research and data access, and the preferences of health‐care consumers.     

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.     

Views on traditional Chinese medicine amongst Chinese population: a systematic review of qualitative and quantitative studies

Background

Health‐care professionals worldwide have started to appreciate patients'' perspectives on the use of complementary and alternative medicine (CAM) particularly given its popularity. However, cultural perspectives may vary and it may not be possible to apply research findings on the use of CAM from the west to the east.

Objective

This systematic review aims to synthesize usage patterns of traditional Chinese medicine (TCM) amongst Chinese populations in different parts of the world and explore potential geographical variations.

Search strategy

Six international and four Chinese databases were searched, and manual searches of relevant monographs and government publications were carried out.

Inclusion criteria

Quantitative, qualitative or mixed‐method research that aimed to investigate Chinese patients'' perception of, and perspectives on, TCM was included.

Data extraction and synthesis

For each study included, texts under the headings of ‘results’ or ‘findings’ were extracted and subjected to analysis. A thematic synthesis approach was adopted for synthesizing qualitative and quantitative studies.

Main results

Amongst the 28 studies included, twenty were quantitative surveys, six were qualitative studies and two were mixed‐method studies. The overall methodological quality was mediocre. Data synthesis suggested that patients from all regions share a common cultural affinity to TCM and consider it to be an effective complement to western medicine (WM) for treating chronic or serious diseases. However, heterogeneous views on (i) disclosing TCM use to WM doctors and (ii) the potential harm of herbs emerged across different study locations.

Discussion and conclusions

Future research should explore how variation in health systems may influence patients'' perception of CAM in different countries.     

‘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.     

Lost in hospital: a qualitative interview study that explores the perceptions of NHS inpatients who spent time on clinically inappropriate hospital wards

Background

Prior research suggests that the placement of patients on clinically inappropriate hospital wards may increase the risk of experiencing patient safety issues.

Objective

To explore patients'' perspectives of the quality and safety of the care received during their inpatient stay on a clinically inappropriate hospital ward.

Design

Qualitative study using semi‐structured interviews.

Participants and setting

Nineteen patients who had spent time on at least one clinically inappropriate ward during their hospital stay at a large NHS teaching hospital in England.

Results

Patients would prefer to be treated on the correct specialty ward, but it is generally accepted that this may not be possible. When patients are placed on inappropriate wards, they may lack a sense of belonging. Participants commented on potential failings in communication, medical staff availability, nurses'' knowledge and the resources available, each of which may contribute to unsafe care.

Conclusions

Patients generally acknowledge the need for placement on inappropriate wards due to demand for inpatient beds, but may report dissatisfaction in terms of preference and belonging. Importantly, patients recount issues resulting from this placement that may compromise their safety. Hospital managers should be encouraged to appreciate this insight and potential threat to safe practice and where possible avoid inappropriate ward transfers and admissions. Where such admissions are unavoidable, staff should take action to address the gaps in safety of care that have been identified.     

‘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.     

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.     

Opting out of dialysis – Exploring patients' decisions to forego dialysis in favour of conservative non‐dialytic management for end‐stage renal disease

Background

Dialysis prolongs the life of people with end‐stage renal disease (ESRD), but for patients who are elderly and suffer multiple comorbid illnesses the benefits of dialysis may be outweighed by its negative consequences. Non‐dialytic conservative management has therefore become an alternative treatment route, yet little is known on patients'' experience with choosing end‐of‐life treatment.

Aims

To gain insight into the decision‐making process leading to opting out of dialysis and the experience with conservative non‐dialytic management from the patients'' perspective.

Design

Qualitative study using semi‐structured interviews. Interpretative phenomenological analysis was undertaken as the framework for data analysis.

Setting/Participants

N = 9 ESRD participants who have taken the decision to forego dialysis were recruited from the advanced care programme under the National Healthcare Group, Singapore.

Results

Participants discussed life since ESRD diagnosis, and the personal and contextual factors that led them to choose conservative management. The perceived physical and financial burden of dialysis both for the individual but most importantly for their family, uncertainty over likely gains over risks which were fuelled by communication of negative dialysis stories of others, coupled with sense of life completion and achievement led them to refuse dialysis. All participants took ownership of their decision despite contrary advice by doctors and were content with their decision and current management.

Conclusions

Study highlights the factors driving patients'' decisions for conservative non‐dialytic management over dialysis to allow medical professionals to offer appropriate support to patients through their decision‐making process and in caring them for the rest of their lives.     

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.     

Including citizens in institutional reviews: expectations and experiences from the Dutch Healthcare Inspectorate

Background

Recent changes in the structure and policy context of Dutch health care have placed the issue of citizen participation high on the agenda of the Dutch Healthcare Inspectorate (IGZ), which conducts quality and safety reviews in medical practices and health‐care institutions. With a few exceptions, the potential role that citizens can play in the regulation of health‐care institutions is overlooked in research on patient/citizen participation in health care.

Objective

This research addressed the following question: What are the (political) expectations for increasing citizen participation in health‐care regulation and how do these compare to regulators'' expectations and experiences in practice?

Design

Because of the largely explorative nature of this study, we used qualitative methods (document and web analysis, focus groups and interviews) to answer this question.

Results

Our study shows that inspectors already have experience with participatory formats that lead to important information. There are three areas where the IGZ is currently increasing citizen participation: (i) providing individuals with information about inspectorate processes and activities, (ii) including patients as sources of information, and (iii) formally reviewing how citizen participation is ensured by health‐care institutions. In situations where the patient has the clearest overview of the whole care trajectory, intensive methods of participation deliver valuable information.

Conclusions

It is important to target participation activities and to capitalize on existing opportunities and activities, rather than creating participation activities for the sake of participation. In this regard, further research on the effectiveness and efficacy of different participatory strategies is necessary.     

Survey of patients' experiences and perceptions of care provided by nurse and pharmacist independent prescribers in primary care

Background

In the United Kingdom, nurses and pharmacists who have undertaken additional post‐registration training can prescribe medicines for any medical condition within their competence (non‐medical prescribers, NMPs), but little is known about patients'' experiences and perceptions of this service.

Objective

to obtain feedback from primary care patients on the impact of prescribing by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs) on experiences of the consultation, the patient–professional relationship, access to medicines, quality of care, choice, knowledge, patient‐reported adherence and control of their condition.

Design

Two cross‐sectional postal surveys.

Setting and participants

Patients prescribed for by either NIPs or PIPs in six general practices from different regions in England.

Results

30% of patients responded (294/975; 149/525 NIPs; 145/450 PIPs). Most said they were very satisfied with their last visit (94%; 87%), they were told as much as they wanted to know about their medicines (88%; 80%), and felt the independent prescriber really understood their point of view (87%; 75%). They had a good relationship with (89%; 79%) and confidence in (84%; 77%) their NMP. When comparing NMP and doctor prescribing services, most patients reported no difference in their experience of care provided, including access to it, control of condition, support for adherence, quality and safety of care.

Discussion and conclusions

Patients had positive perceptions and experience from their NMP visit. NMPs were well received, and patients'' responses indicated the establishment of rapport. They did not express a strong preference for care provided by either their non‐medical or medical prescriber.     

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.