A qualitative study of patient and professional perspectives of healthcare services for multiple sclerosis: implications for service development and policy

Multiple sclerosis (MS) is a chronic degenerative condition, with heterogeneous symptoms, and an unpredictable prognosis. Previous literature suggests patients' experiences of healthcare are unsatisfactory. Primary care may play a key role in the management of people with MS (PwMS); however, provision of services for PwMS has received little focus in the primary care literature. This study aimed to explore perspectives and experiences of PwMS and healthcare professionals of UK healthcare services for MS. Semi‐structured interviews were conducted with 24 PwMS, 13 Practice Nurses, 12 General Practitioners and 9 MS Specialist Nurses in northern England, between October 2012 and April 2014. Participants were purposively selected. Data were analysed thematically using constant comparative analysis. The theoretical framework of candidacy was used to interrogate data, with themes mapping onto the National Institute for Health and Care Excellence (NICE) guideline for MS. How PwMS interpreted symptoms as leading to candidacy for care dictated help‐seeking. PwMS required additional support in identifying symptoms due to MS. Participants reported poor experiences of care including poor access to services, poor continuity of care and poor interpersonal interactions with perceptions of limited person‐centredness. PwMS and professionals identified that MS‐related disability and progression of symptoms required responsive care. Relational continuity enabled PwMS to feel understood, and professionals to holistically appraise symptoms and progression. In conclusion, continuity and patient‐centredness of care are central to positive healthcare experiences for PwMS and professionals. Services need to be more accessible to ensure responsive and effective MS management. This study provides unique findings on the role of primary care for PwMS, and the relationship between findings and MS NICE guideline recommendations with implications for service delivery in the community.     

Renegotiating inter‐professional boundaries in maternity care: implementing a clinical pathway for normal labour

This article presents findings from a study of a clinical pathway for normal labour (Normal Labour Pathway) implemented in Wales, UK. The study was conducted between 2004 and 2006. The pathway aimed to support normal childbirth and reduce unnecessary childbirth interventions by promoting midwife‐led care. This article focuses on how the pathway influenced the inter‐professional relationships and boundaries between midwives and doctors. Data are drawn from semi‐participant observation, focus groups and semi‐structured interviews with 41 midwives, and semi‐structured interviews with five midwifery managers and six doctors, working in two research sites. Whereas some studies have shown how clinical pathways may act as ‘boundary objects’, dissolving professional boundaries, promoting interdisciplinary care and de‐differentiating professional identities, the ‘normal labour pathway’ was employed by midwives as an object of demarcation, which legitimised a midwifery model of care, clarified professional boundaries and accentuated differences in professional identities and approaches to childbirth. The pathway represented key characteristics of a professional project: achieving occupational autonomy and closure. Stricter delineation of the boundary between midwifery and obstetric work increased the confidence and professional visibility of midwives but left doctors feeling excluded and undervalued, and paradoxically reduced the scope of midwifery practice through redefining what counted as normal.     

Negotiating inter‐professional interaction: playing the general practitioner‐pharmacist game

Despite a mutual interest in optimising the benefits of medication for patients, the general practitioner (GP) and community pharmacist (CP) often work in isolation from one another, both physically and figuratively. Sources of tension include pharmacy's ‘shopkeeper’ image, traditional medical hierarchies and potential encroachment on professional boundaries. This article examines GP and CP perceptions of their interactions and negotiations and, drawing on the works of Stein and Goffman, identifies a set of ‘unwritten’ rules, termed the ‘GP‐pharmacist game’, which involves the concept of ‘face‐work’. Qualitative interviews with 20 GPs and 23 CPs located in four geographically and demographically different areas in England were conducted during 2010–11. Key rules of the game include the pharmacist avoiding blaming the GP, using discretion in front of patients, and balancing the necessity and frequency of the communication. This article argues that whilst adhering to the ‘GP‐pharmacist game’ may avoid conflict and ‘get the job done’, it may also constrain efforts to meet wider health care policy aims of a more collaborative relationship.     

The early days of primary care groups: general practitioners' perceptions

English primary care is currently undergoing radical reform. Primary care groups (PCGs), effectively compulsory federations of general practices, came into legal existence in April 1999. This paper contains a review of general practitioners' (GPs') initial perceptions of the impact of these reforms on practice and considers the wider issue of changes in professional autonomy. A random sample of 49 GPs from two adjacent health districts in the North of England were interviewed as part of a longitudinal qualitative study. One round of interviews took place 7 to 9 months after the creation of PCGs and a further round of interviews was carried out 6 months later. We were interested in GPs' knowledge of recently formed (PCGs') plans and priorities, the impact of PCG activity to date, and the predicted future impact of such activity. After the published priorities of PCGs had been identified, thematic content analysis was used to ascertain GPs' perceptions of those priorities. GPs were generally unaware of their PCGs' published priorities. The wider strategic role of PCGs in commissioning services was rarely alluded to. Although over a third of GPs reported no current impact of the PCG, the majority expected PCGs to have considerable impact. In particular, control, management and accountability arrangements were all perceived as central issues in the expected developments. Performance management arrangements related to specific clinical priorities were widely expected. Although the new arrangements were inspiring little enthusiasm, the reforms did not appear to threaten GPs sufficiently enough to provoke active resistance.     

Primary care team working in Ireland: a qualitative exploration of team members’ experiences in a new primary care service

Team working is an integral aspect of primary care, but barriers to effective team working can limit the effectiveness of a primary care team (PCT). The establishment of new PCTs in Ireland provides an excellent opportunity to explore team working in action. The aim of this qualitative study was to explore the experiences of team members working in a PCT. Team members (n = 19) from two PCTs were interviewed from May to June 2010 using a semi‐structured interview guide. All interviews were audio‐recorded and transcribed. Data were analysed using NVivo (version 8). Thematic analysis was used to explore the data. We identified five main themes that described the experiences of the team members. The themes were support for primary care, managing change, communication, evolution of roles and benefits of team working. Team members were generally supportive of primary care and had experienced benefits to their practice and to the care of their patients from participation in the team. Regular team meetings enabled communication and discussion of complex cases. Despite the significant scope for role conflict due to the varied employment arrangements of the team members, neither role nor interpersonal conflict was evident in the teams studied. In addition, despite the unusual team structure in Irish PCTs – where there is no formally appointed team leader or manager – general issues around team working and its benefits and challenges were very similar to those found in other international studies. This suggests, in contrast to some studies, that some aspects of the leadership role may not be as important in successful PCT functioning as previously thought. Nonetheless, team leadership was identified as an important issue in the further development of the teams.     

Labor supply effects of long‐term care reform in Germany

Many informal caregivers are of working age, facing the double burden of providing care and working. Negative labor supply effects can severely reduce the comparative cost advantage of informal over formal care arrangements. When designing long‐term care (LTC) policies, it is crucial to understand the effects not only on health outcomes but also on labor supply behavior of informal caregivers. We evaluate labor supply reactions to the introduction of the German long‐term care insurance in 1995 using a difference‐in‐differences approach. The long‐term care insurance changes the caregivers' trade‐off between labor supply and care provision. The aim of the reform was to strengthen informal care arrangements. We find a strong negative labor supply effect for men but not for women. We argue that the LTC benefits increased incentives for older men to leave the labor market. The results reveal a trade‐off for policy makers that is important for future reforms—in particular for countries that mainly base their LTC system on informal care.     

Approaches to reducing the most important patient errors in primary health‐care: patient and professional perspectives

We have previously reported a preliminary taxonomy of patient error. However, approaches to managing patients’ contribution to error have received little attention in the literature. This paper aims to assess how patients and primary care professionals perceive the relative importance of different patient errors as a threat to patient safety. It also attempts to suggest what these groups believe may be done to reduce the errors, and how. It addresses these aims through original research that extends the nominal group analysis used to generate the error taxonomy. Interviews were conducted with 11 purposively selected groups of patients and primary care professionals in Auckland, New Zealand, during late 2007. The total number of participants was 83, including 64 patients. Each group ranked the importance of possible patient errors identified through the nominal group exercise. Approaches to managing the most important errors were then discussed. There was considerable variation among the groups in the importance rankings of the errors. Our general inductive analysis of participants’ suggestions revealed the content of four inter‐related actions to manage patient error: Grow relationships; Enable patients and professionals to recognise and manage patient error; be Responsive to their shared capacity for change; and Motivate them to act together for patient safety. Cultivation of this GERM of safe care was suggested to benefit from ‘individualised community care’. In this approach, primary care professionals individualise, in community spaces, population health messages about patient safety events. This approach may help to reduce patient error and the tension between personal and population health‐care.     

Health and the Internet--changing boundaries in primary care

BACKGROUND: Little is known about the frequency with which information from the Internet is presented by patients within primary care consultations or the subsequent impact that it may have on those consultations. OBJECTIVES: The aims of this study were to describe the frequency with which Internet information was presented within primary care consultations in one inner-city health authority and to describe the characteristics of the subsequent consultation from the perspective of the health professionals involved. METHODS: A postal survey was used to estimate the frequency of Internet information presentation and eight in-depth interviews were used to obtain health professionals' perceptions of the consultations that followed. RESULTS: Presentation of information from the Internet was relatively infrequent within primary care at the time of the survey (November 2000 to March 2001), but frequencies of presentation were higher for GPs than for any other health professional group. Health professionals have stereotypical views of Internet users and fear for their own professional status in relation to the Internet-informed patient or client. CONCLUSIONS: Although presentation of information from the Internet to date remains relatively infrequent, health professionals appear to feel threatened by it and adopt strategies that minimize its impact on the subsequent consultation.     

Empowering people to help speak up about safety in primary care: Using codesign to involve patients and professionals in developing new interventions for patients with multimorbidity

Background

Multimorbidity, defined as the presence of two or more long‐term conditions, is increasingly common in primary care, and patients with multimorbidity may face particular barriers to quality of care and increased safety risks due to the complexity of managing multiple conditions. Consistent with calls to directly involve service users in improving care, we aimed to use design materials to codesign new interventions to improve safety in primary care.

Design

We drew on two established methods—accelerated experience‐based codesign and the future workshop approach. We synthesized design materials based on research into the patient experience of safety and multimorbidity in primary care to enable both patients, service users and carers, and primary health‐care professionals to propose interventions to improve care.

Results

Both patients and professionals prioritized polypharmacy as a threat to safety. Their recommendations for supportive interventions were consistent with Burden of Treatment theory, emphasizing the limited capacity of patients with multimorbidity and the need for services to proactively offer support to reduce the burden of managing complex treatment regimes.

Discussion & Conclusions

The process was feasible and acceptable to participants, who valued the opportunity to jointly propose new interventions. The iterative workshop approach enabled the research team to better explore and refine the suggestions of attendees. Final recommendations included the need for accessible reminders to support medication adherence and medication reviews for particularly vulnerable patients conducted with pharmacists within GP practices.     

Challenges of providing confidential care to adolescents in urban primary care: clinician perspectives

PURPOSE Clinician time alone with an adolescent has a major impact on disclosure of risk behavior. This study sought to describe primary care clinicians’ patterns of delivering time alone, decision making about introducing time alone to adolescents and their parents, and experiences delivering confidential services.METHODS We undertook qualitative interviews with 18 primary care clinicians in urban health centers staffed by specialists in pediatrics, family medicine, and adolescent medicine.RESULTS The annual preventive care visit is the primary context for provision of time alone with adolescents; clinicians consider the parent-child dynamic and the nature of the chief complaint for including time alone during visits for other than preventive care. Time constraints are a major barrier to offering time alone more frequently. Clinicians perceive that parental discomfort with time alone is rare. Many clinicians wrestle with internal conflict about providing confidential services to adolescents with serious health threats and regard their role as facilitating adolescent-parent communication. Health systems factors can interfere with delivery of confidential services, such as inconsistent procedures for determining whether unaccompanied youth would be seen.CONCLUSION Despite competing time demands, clinicians report commitment to offering time alone during preventive care visits and infrequently offer it at other times. Experienced clinicians can gain skills in the art of managing complex relationships between adolescents and their parents. Office systems should be developed that enhance the consistency of delivery of confidential services.     

Paediatric spinal fusion surgery and the transition to home‐based care: provider expectations and carer experiences

There are more than 12 million children with special healthcare needs (CSHCNs) in the United States, many of whom require specialised health‐care to treat chronic physical and developmental conditions. This study is a qualitative investigation of programme, surgical and at‐home recovery experiences among CSHCNs and their family carers who participated in a spine surgical care programme at a paediatric hospital in the Western United States. The programme is designed to manage increased surgical risk and the transition of care from hospital to home for children with severe scoliosis undergoing spinal fusion surgery. We conducted 30 semi‐structured in‐depth interviews with 14 surgical team members and 16 family carers of children who had programme evaluations and spinal surgeries in 2006. Data were collected in 2008 and 2009 in hospital or at home locations to gather programme participation feedback from families and inform the adequacy of programme support to families during at‐home recovery. Data were analysed by reflexive team and content analysis methodologies. Results showed the programme was effective at improving preoperative surgical evaluation and helping families to anticipate some aspects of the surgical experience and hospital discharge. However, the impact of spinal fusion surgery and the subsequent transition to home‐based care was profoundly emotional for patients and their carers. Our data indicate that programme providers underestimated the extent of emotional trauma experienced by patients and families, particularly during the at‐home recovery process. The data also suggest meaningful differences in providers' and carers' expectations for surgery. Carers' disappointment with their recovery experiences and the perceived lack of post‐discharge support impacted their interpretations of and perspectives on their surgical experience. Implications of this research for surgical care programmes include the need for assessment and provision of support for physical, social, and emotional burdens experienced by patients and carers at pre‐surgical, surgical and at‐home recovery phases.     

Facilitators and inhibitors of transition for older people who have relocated to a long‐term care facility: A systematic review

Moving into a long‐term care facility to live permanently is a significant life event for older people. Care facilities need to support older people to make a healthy transition following relocation. To help achieve this, we need to understand what facilitates and inhibits the transition process from the perspective of older people, their families, and care facility staff. Our review generated new knowledge to inform this understanding. We addressed the question: what factors facilitate and inhibit transition for older people who have relocated to a long‐term care facility? Five electronic databases, PsychINFO, British Nursing Index, CINAHL, MEDLINE and Web of Science were searched for the period January 1990 to October 2017. Grey literature searches were conducted using Google Scholar, and Social Science Research Network. Data were extracted for individual studies and a narrative synthesis was conducted informed by Meleis's Theory of Transition. Thirty‐four studies (25 qualitative, 7 quantitative and 2 mixed methods) met the inclusion criteria. Data synthesis identified that transition following relocation was examined using a variety of terms, timelines and study designs. Potential personal and community focused facilitators and inhibitors mapped to four themes: resilience of the older person, interpersonal connections and relationships, this is my new home, and the care facility as an organisation. These findings can inform the development of interventions for these target areas. They highlight also that further research is warranted to understand the organisational culture of long‐term care facilities, how this influences transition, and how it might be shaped to create and sustain a caring culture for older people.     

Unmet long‐term care needs and depression: The double disadvantage of community‐dwelling older people in rural China

This study investigates the relationship between unmet long‐term care needs and depressive symptoms among community‐dwelling older people in China. The data come from a nationally representative sample of 1,324 disabled older people from the China Health and Retirement Longitudinal Survey (CHARLS) collected between 2013 and 2014. Regression analyses were conducted to examine the factors associated with unmet needs and the impacts of unmet needs on people’s depressive symptoms. We found that disabled older people living in rural communities have a higher level of unmet needs than those in urban communities. Unmet needs cause more severe depressive symptoms among rural older people, but they do not have a significant impact among urban older people. Depressive symptoms are also affected by people’s health conditions in rural China and by household income in urban China. We argue that older people living in rural communities face a double disadvantage. The first disadvantage relating to unmet needs reinforces the second one relating to mental health. These findings highlight the urgent need for more investment by the Chinese central government in formal social care services and support for carers in rural areas.     

Infectious diseases in primary care; managing the interface between the person and the community

Respiratory infections are still among the most common new diagnoses in primary care. The most frequent reason for encounter is acute cough. General practitioners have to make antibiotic prescribing decisions in a context of diagnostic uncertainty, patient preferences and antimicrobial resistance. There is a causal link between antimicrobial resistance and antibiotic prescribing in primary care. GRACE observational studies (www.grace-lrti.org), show that variation in clinical presentation does not explain the considerable variation in antibiotic prescribing in Europe for adults presenting in primary care with acute cough and that recovery is similar between those treated with any antibiotic, a particular antibiotic class, or no antibiotic. A GRACE randomized controlled trial (RCT) of the effect of antibiotics for acute cough has recruited more patients than all RCTs combined in the current Cochrane Review and will have the power to identify subgroups of patients who will (not) benefit from amoxicillin. Another multi-country GRACE RCT assessing the effect on antibiotic prescribing of largely web-based versions of successful interventions including a C-reactive protein point-of-care test, a communication skill training and an interactive patient booklet is awaited. Given potential long-term cost-effectiveness, the GRACE suite of observational and interventional studies are enhancing the evidence base for reducing diagnostic uncertainty and managing patient expectations in a patient-centred way to achieve greater evidence-based antibiotic prescribing that is likely to help containing antimicrobial resistance.     

The benefits of respectful interactions: fluid alliancing and inter‐occupational information sharing in primary care

Though inter‐occupational interactions in health care have been the focus of increasing attention, we still know little about how such interactions shape information sharing in clinical settings. This is particularly true in primary care where research on teams and collaboration has been based on individual perceptions of work (using surveys and interviews) rather than observing the interactions that directly mediate the inter‐occupational flow of information. To explore how interactions shape information sharing, we conducted a secondary analysis of ethnographic data from 27 primary care practices. Ease of information sharing among nurses and doctors is linked to the degree to which practices feature respectful interactions, with practices in the sample falling into one of three categories (those with low, uneven, and high degrees of respectful interactions). Those practices with the highest degree of respectful interactions demonstrate what we describe as fluid‐alliancing: flexible interactions between individuals from different occupational groups in which bidirectional information sharing occurs for the benefit of patients and the efficacy of the practice community. We conclude by arguing that this process unlocks the strengths of all practice members, and that leadership should encourage respectful interactions to augment organisational efficacy and the ability of individual practice members to provide quality patient care.