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.     

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.     

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.     

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.     

Towards a stakeholders' consensus on patient payment policy: the views of health‐care consumers,providers, insurers and policy makers in six Central and Eastern European countries

Background

Although patient charges for health‐care services may contribute to a more sustainable health‐care financing, they often raise public opposition, which impedes their introduction. Thus, a consensus among the main stakeholders on the presence and role of patient charges should be worked out to assure their successful implementation.

Aim

To analyse the acceptability of formal patient charges for health‐care services in a basic package among different health‐care system stakeholders in six Central and Eastern European countries (Bulgaria, Hungary, Lithuania, Poland, Romania and Ukraine).

Methods

Qualitative data were collected in 2009 via focus group discussions and in‐depth interviews with health‐care consumers, providers, policy makers and insurers. The same participants were asked to fill in a self‐administrative questionnaire. Qualitative and quantitative data are analysed separately to outline similarities and differences in the opinions between the stakeholder groups and across countries.

Results

There is a rather weak consensus on patient charges in the countries. Health policy makers and insurers strongly advocate patient charges. Health‐care providers overall support charges but their financial profits from the system strongly affects their approval. Consumers are against paying for services, mostly due to poor quality and access to health‐care services and inability to pay.

Conclusions

To build consensus on patient charges, the payment policy should be responsive to consumers'' needs with regard to quality and equity. Transparency and accountability in the health‐care system should be improved to enhance public trust and acceptance of patient payments.     

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.     

Polio survivors' perceptions of the meaning of quality of life and strategies used to promote participation in everyday activities

Introduction

The term ‘post‐polio syndrome’ (PPS) is used to describe new and late manifestations of poliomyelitis that occur later in life. Research in this area has focused upon health status rather than its effect on quality of life.

Aim

To gain an in‐depth understanding of the meaning of quality of life for polio survivors and to determine the type of strategies that are used by people with PPS and the support that they consider as important to facilitate participation in everyday life activities that have an impact on their quality of life.

Method

Six focus groups were conducted with 51 participants from two regions in England. Data were audio‐taped and analysed using thematic analysis.

Results

Our research found that polio survivors used terms used to describe quality of life which could be associated with that of happiness. Our research has identified resolvable factors that influence quality of life namely inaccessible environments, attitudes of health‐care professionals and societal attitudes. Polio survivors have tried alternative therapies, chiefly acupuncture and massage, and found them to be effective in enhancing their quality of life.

Conclusion

It is suggested that health‐care professionals should consider factors which influence happiness and implement a person‐centred approach with the views of the polio survivor being listened to. The three factors that influenced quality of life could be resolved by health‐care professionals and by society. With regard to strategies used, we suggest that polio survivors should have access to the treatments that they perceive as important, although further research is required to design optimal interventions for this client group.     

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.     

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.     

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.     

The Consumer Quality Index in an accident and emergency department: internal consistency,validity and discriminative capacity

Background

Patients’ experiences are an indicator of health‐care performance in the accident and emergency department (A&E). The Consumer Quality Index for the Accident and Emergency department (CQI A&E), a questionnaire to assess the quality of care as experienced by patients, was investigated. The internal consistency, construct validity and discriminative capacity of the questionnaire were examined.

Methods

In the Netherlands, twenty‐one A&Es participated in a cross‐sectional survey, covering 4883 patients. The questionnaire consisted of 78 questions. Principal components analysis determined underlying domains. Internal consistency was determined by Cronbach''s alpha coefficients, construct validity by Pearson''s correlation coefficients and the discriminative capacity by intraclass correlation coefficients and reliability of A&E‐level mean scores (G‐coefficient).

Results

Seven quality domains emerged from the principal components analysis: information before treatment, timeliness, attitude of health‐care professionals, professionalism of received care, information during treatment, environment and facilities, and discharge management. Domains were internally consistent (range: 0.67–0.84). Five domains and the ‘global quality rating’ had the capacity to discriminate among A&Es (significant intraclass correlation coefficient). Four domains and the ‘global quality rating’ were close to or above the threshold for reliably demonstrating differences among A&Es. The patients’ experiences score on the domain timeliness showed the largest range between the worst‐ and best‐performing A&E.

Conclusions

The CQI A&E is a validated survey to measure health‐care performance in the A&E from patients’ perspective. Five domains regarding quality of care aspects and the ‘global quality rating’ had the capacity to discriminate among A&Es.     

Assessing patient preferences for the delivery of different community‐based models of care using a discrete choice experiment

Objectives

To assess patient preferences for different models of care defined by location of care, frequency of care and principal carer within community‐based health‐care services for older people.

Design

Discrete choice experiment administered within a face‐to‐face interview.

Setting

An intermediate care service in a large city within the United Kingdom.

Participants

The projected sample size was calculated to be 200; however, 77 patients were recruited to the study. The subjects had recently been discharged from hospital and were living at home and were receiving short‐term care by a publicly funded intermediate care service.

Interventions

Not applicable.

Main Outcome Measure

The degree of preference, measured using single utility score, for individual service characteristics presented within a series of potential care packages.

Results

Location of care was the dominant service characteristics with care at home being the strongly stated preference when compared with outpatient care (0.003), hospital care (<0.001) and nursing home care (<0.001) relative to home care, although this was less pronounced among less sick patients. Additionally, the respondents indicated a dislike for very frequent care contacts. No particular type of professional carer background was universally preferred but, unsurprisingly, there was evidence that sick patients showed a preference for nurse‐led care.

Conclusions

Patients have clear preferences for the location for their care and were able to state preferences between different care packages when their ideal service was not available. Service providers can use this information to assess which models of care are most preferred within resource constraints.     

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.     

Multidisciplinary diabetes team care: the experiences of young adults with Type 1 diabetes

Background

This research examined whether young adults with Type 1 diabetes engage with the multidisciplinary consultation process and if not, then why.

Methods

We designed a web‐based self‐reported survey, available online from February to May 2011, for Australian adults 18–35 years with Type 1 diabetes. Respondents were asked about which clinicians they consulted to assist with self‐management. To expand on the results of the survey, we interviewed 33 respondents.

Results

Survey: Respondents (n = 150) consulted with the following clinicians: endocrinologist and diabetes educators: 23.3%; endocrinologist only: 18.0%; endocrinologist, diabetes educators and dieticians: 14.6%; endocrinologist, diabetes educators, dietician and general practitioners (GP): 11.3%; endocrinologist and GP: 10.6%; GP only: 4.6%; all clinicians recommended to assist with self‐management: 1.3%; 2.7% did not consult any clinician. Interview: Participants (n = 33) reported eight key disincentives to consultation with multidisciplinary clinicians. These were time constraints; provision of conflicting advice; inaccessibility of health services; variation in service standards; cost constraints; failure of clinicians to refer to other clinicians; lack of opportunity to build a therapeutic relationship; and failure of clinicians to engage in shared decision making.

Conclusion

Our results indicate that high attrition rates of young adults with Type 1 diabetes from recommended diabetes health services is linked to the failure of those services to meet the needs and preferences of their patients. The identified needs and preferences included joint consultation with multi‐disciplinary team clinicians; flexible access to advice by email or telephone consultation; and shared decision making. Patient engagement in health‐service re‐design has implications for improved health‐service delivery and enhanced treatment outcomes.     

What is the evidence base for public involvement in health‐care policy?: results of a systematic scoping review

Background

Public involvement in health‐care policy has been advocated as a means to enhance health system responsiveness, yet evidence for its impact has been difficult to ascertain.

Objectives

To review the peer‐reviewed empirical evidence on outcomes of public involvement in health‐care policy.

Methods

We systematically searched PsychINFO and PubMed from November 2000 to April 2010 for empirical studies that reported on original research only; studies in languages other than English, German or French were excluded. Data were extracted using a standardized evidence table with a priori determined headings.

Main results

Nineteen studies were identified as eligible for inclusion in our review. We found that sound empirical evidence of the outcomes of public involvement activities in health care remains underdeveloped. The concept and the indicators used to examine and determine outcomes remain poorly specified and inconsistent, as does the reporting of the evidence. There was some evidence for the developmental role of public involvement, such as enhancing awareness, understanding and competencies among lay participants. Evidence for instrumental benefits of public involvement initiatives was less well documented.

Conclusions

Despite the growing body of work on public involvement in health‐care policy, evidence of its impact remains scarce; thus, firm conclusions about involvement activities that are appropriate and effective for policy development are difficult to draw. However, focus on outcomes risks missing the normative argument that involving the public in the health‐care policy process may be seen to be of intrinsic value.     

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.