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.     

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.     

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.     

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.     

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.     

Quality and use of consumer information provided with home test kits: room for improvement

Background

Diagnostic self‐tests (tests on body materials that are initiated by consumers with the aim of diagnosing a disorder or risk factor) are becoming increasingly available. Although the pros and cons of self‐testing are currently not clear, it is an existing phenomenon that is likely to gain further popularity.

Objective

To examine consumers'' use of and needs for information about self‐testing, and to assess the quality of consumer information provided with home test kits, as perceived by consumers and as assessed using a checklist of quality criteria.

Methods

A cross‐sectional Internet survey among 305 self‐testers assessed their use of and needs for information and their perception of the quality of consumer information provided with self‐test kits. A meta‐search engine was used to identify Dutch and English consumer information for home diagnostic tests available online at the time of the study. The quality of this consumer information was evaluated using a checklist of quality criteria.

Results

The consumers'' information needs were in line with the most frequently used information, and the information was perceived as being of moderate to good quality. The information was mostly in agreement with clinical practice guidelines, although information on reliability and follow‐up behaviour was limited. Approximately half of the instruction leaflets did not include information on the target group of the test.

Conclusions

Although generally of moderate to good quality, some aspects of the information provided were in many cases insufficient. European legislation concerning self‐tests and accompanying information needs to be adapted and adhered to more closely.     

Consumer views on a new holistic screening tool for supportive and palliative‐care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self‐help support groups in health care

Background

Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use.

Aims

To elicit the views of a wide variety of members of consumer and self‐help support groups concerned with health care on the relevance, acceptability and the overall perception of using SPARC as an early holistic needs assessment tool in supportive and palliative care.

Methods

This study was conducted in South Yorkshire and North Derbyshire (UK). Ninety‐nine consumer and self‐help groups were identified from information in the public domain. Thirty‐eight groups participated. Packs containing study information and self‐complete postal questionnaires were distributed to groups, and they were asked to circulate these to their members. Completed questionnaires were returned in pre‐paid envelopes to the research team.

Results

135 questionnaires and feedback forms were returned. The majority of respondents found SPARC easy to understand (93% (120/129; 95% Confidence Interval 87% to 96%) and complete (94% (125/133; 95% CI: 88% to 97%). A minority, 12.2% (16/131), of respondents found questions on SPARC ‘too sensitive’.

Conclusions

Overall, respondents considered SPARC an acceptable and relevant tool for clinical assessment of supportive and palliative‐care needs. Whilst a small minority of people found SPARC difficult to understand (i.e. patients with cognitive impairments), most categories of service user found it relevant. Clinical studies are necessary to establish the clinical utility of SPARC.     

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.     

Attitudes and beliefs of non‐participants in a population‐based screening programme for colorectal cancer

Background

Uptake of colorectal cancer screening programmes needs to be improved or at least maintained in order to achieve projected reductions in mortality and morbidity. Understanding the origins of non‐participation in screening is therefore important.

Objective

To explore the beliefs and experiences of individuals who had not responded either to their screening invitation or reminder.

Design

A qualitative study using in‐depth interviews with non‐participants from England''s population‐based colorectal cancer screening programme. Data collection and analysis were carried out using a grounded theory approach, with an emphasis on the constant comparison method, and continued until saturation (27 interviews).

Findings

The interviews provided an in‐depth understanding of a range of reasons and circumstances surrounding non‐participation in screening, including contextual and environmental influences as well as factors specific to the screening test. Non‐participation in screening was not necessarily associated with negative attitudes towards screening or a decision to not return a kit. Reasons for non‐participation in screening included not feeling that participation is personally necessary, avoiding or delaying decision making, and having some degree of intention to take part but failing to do so because of practicalities, conflicting priorities or external circumstances. Beliefs, awareness and intention change over time.

Discussion and conclusions

A range of approaches may be required to improve screening uptake. Some non‐participants may already have a degree of intention to take part in screening in the future, and this group may be more responsive to interventions based on professional endorsement, repeat invitations, reminders and aids to making the test more practical.     

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.     

Why do women not return family history forms when referred to breast cancer genetics services? A mixed‐method study

Background

Personal and family data forms, completed by women referred to breast cancer genetics clinics, are valuable tools for verification and extension of family history, crucial steps in accurate risk evaluation. A significant minority of women do not complete and return these forms, despite reminders, even when completion is a pre‐requisite for a clinic appointment.

Objective

To facilitate access of women at increased familial risk of breast cancer to screening and counselling services by investigating reasons for non‐return of the forms.

Participants and Design

Based on a single regional ‘breast cancer family’ service in the UK, Analysis of quantitative data comparing women who did not return forms (n = 55) with those who had done so (n = 59), together with qualitative evaluation of potential barriers to form‐completion through semi‐structured telephone interviews with a random subset of ‘non‐returners’ (n = 23).

Results

Non‐returners have higher proportions of the very young (below the age at which surveillance could be offered) and of women from lower social deprivation categories. Interviews revealed that the majority of non‐returners are anxious, rather than unconcerned about their breast cancer risk and circumstances and attitudes contributed to non‐compliance. Twenty‐one participants confirmed that they would welcome an appointment at a ‘breast cancer family’ clinic, but nine did not attend for the appointment. They were significantly younger than those who attend, but were not at lower familial risk.

Discussion and Conclusions

Many women who fail to complete and return a family history form would benefit from risk assessment and genetic counselling. Several steps are suggested that might help them access the relevant services.     

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.     

Critical appraisal training increases understanding and confidence and enhances the use of evidence in diverse categories of learners

Background

Training in evidence‐based medicine is most commonly offered to physicians, medical students and health‐care decision‐makers.

Setting and participants

We partnered with community organizations to recruit participants and develop trainings for consumers, non‐physician health‐care providers and journalists in California.

Intervention

We conducted half‐day and one‐day workshops in critical appraisal of health evidence. Workshops consisted of didactic presentations, small‐group practice sessions and class discussions.

Outcome measures

We measured knowledge and confidence immediately before and after the workshops and at follow‐up 6 months later. We also asked participants to describe their use of health evidence before the workshops and at follow‐up.

Results

At baseline, 41% of the consumers, 45% of the providers and 57% of the journalists correctly answered questions about health evidence. Scores increased by about 20% (P < 0.05) in all groups at the end of the workshops and remained significantly over baseline at follow‐up. At baseline, 26% of the participants were confident in their understanding of critical appraisal concepts, significantly increasing to 54% after the workshops and sustained (53%) at follow‐up. During discussions, participants’ comments often focused on funding and the potential effects of financial conflicts of interest on study findings. Participants did not use evidence more frequently at follow‐up but said that they applied workshop skills in evaluating research, communicating with others and making decisions about health care.

Conclusion

It is possible to successfully conduct critical appraisal workshops to aid health‐related decision making for groups who have previously not had access to this kind of training.     

Is the Give Youth a Voice questionnaire an appropriate measure of teen‐centred care in paediatric oncology: a Rasch measurement theory analysis

Background

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

Objective

To determine whether the 56‐item Give Youth a Voice (GYV‐56), its subscales and its 20‐item short‐form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen‐centred care (TCC) in paediatric oncology.

Design

Qualitative interviews and a questionnaire survey.

Setting and participants

Qualitative interviews with 38 childhood cancer survivors. GYV‐56 data collected from 200 paediatric cancer patients and survivors.

Main outcome measure

The GYV‐56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen‐centred services.

Results

Qualitative data provided broad support for the TCC conceptual framework and GYV‐56 items. After post‐hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi‐square P‐values, scale reliability were supported and item locations defined a continuum for TCC that was well‐targeted to the sample. By calibrating the items for each subscale and the short‐form to the full scale, the scores obtained on each measure are directly comparable.

Conclusion

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.     

Attitudes to weight and weight management in the early teenage years: a qualitative study of parental perceptions and views

Background

As most young teenagers grow up in families, parents might be well situated to facilitate and support their weight management and thereby prevent or manage obesity prior to adulthood.

Aim

This paper explores parents'' perceptions of, and views about, their teenage children''s weight and the factors that influence parents'' weight management strategies.

Design, setting and participants

We conducted two qualitative studies in Scotland, UK, involving in‐depth interviews with the parents of overweight/obese and ‘normal’ weight 13–15 year olds (n = 69).

Findings

Parents'' concerns about their own weight provided useful context for understanding their attitudes or actions with regards to their teenage child. Some parents described their teenager''s weight as being of concern to them, although puberty often introduced confusion about a child''s weight status. Genetic explanations were very often put forward as a way of making sense of teenage weight or body size. Frustration about advising teenagers about weight management was expressed, and some parents worried about giving their growing child a ‘problem’ if they directly raised concerns about weight with them.

Discussion

Parents'' views about their own weight as well as social and moral norms about labelling a teenager as overweight or as needing help with their weight could usefully inform patient‐centred service development. Parent/teenage partnerships and supporting parents to create a healthy home in which teenagers can make healthier choices are suggestions for intervention development.

Conclusion

The study highlights the importance of taking parents'' perceptions into account when developing family‐based interventions to address teenage overweight and obesity.