‘As soon as you've been there,it makes it personal’: The experience of health‐care staff shadowing patients at the end of life

BackgroundPatient shadowing is an experiential technique intended to enable those who shadow to understand care experience from the patient''s point of view. It is used in quality improvement to bring about change that focuses on what is important for patients.AimTo explore the acceptability of patient shadowing for health‐care staff, the impact of the experience and subsequent motivations to make improvements.MethodA qualitative study with a diverse sample of 20 clinical and non‐clinical health‐care staff in different end‐of‐life settings. Data were analysed thematically.ResultsAnticipated anxieties about shadowing did not materialize in participant accounts, although for some it was a deeply emotional experience, intensified by being with patients who were at the end of life. Shadowing not only impacted on participants personally, but also promoted better insights into the experience of patients, thus focusing their improvement efforts. Participants reported that patients and families who were shadowed welcomed additional caring attention.ConclusionWith the right preparation and support, patient shadowing is a technique that engages and motivates health‐care staff to improve patient‐centred care.     

Health‐care professionals’ assessment of a person‐centred intervention to empower self‐management and health across chronic illness: Qualitative findings from a process evaluation study

BackgroundPerson‐centred care (PCC) empowers patients to manage their chronic illness and promote their health in accordance with their own beliefs, values and preferences. Drawing on health‐care professional''s (HCP’s) experiences implementing an empowerment‐focused, person‐centred intervention called the Bodyknowledging Program (BKP), we undertook a process evaluation that aimed to assess the impact on patient health and well‐being.MethodsWe used individual in‐depth interviews and semi‐structured focus groups comprising n = 8 interprofessional HCP who facilitated intervention sessions with n = 58 patients situated in Norwegian specialist care sites. Content analysis was used to analyse the data and summarize major themes.ResultsHealth‐care professional interviews revealed four main ways in which the intervention operated in support of health‐related patient outcomes: (i) addressing the whole person; (ii) hope and affirmation; (iii) expanding recovery; and (iv) social support and revitalized relationships. The intervention provided new tools for patients to understand the social, emotional and physical impact of their illness. Health‐care professional reported new insights to facilitate patient engagement and to promote patients’ health.ConclusionsThe Bodyknowledging Program facilitated patient engagement through the promotion of patient‐centred care while developing the patients’ ability to exploit their own resources for effectively managing their health within illness. The process evaluation supported the underlying theoretical basis of the intervention and was suggestive of its potential transferability elsewhere.     

Stuff you think you can handle as a parent and stuff you can’t’. Understanding parental health‐seeking behaviour when accessing unscheduled care: A qualitative study

BackgroundUnscheduled health care constitutes a significant proportion of health‐care utilization. Parental decision making when accessing unscheduled care for their children is multifaceted and must be better understood to inform policy and practice.DesignNineteen semi‐structured interviews and one focus group (n = 4) with parents of children younger than twelve in Ireland were conducted. Participants had accessed unscheduled care for their children in the past. Data were thematically analysed.ResultsParents accessed unscheduled care for their children after reaching capacity to manage the child''s health themselves. This was informed by factors such as parental experience, perceived urgency and need for reassurance. Parents considered the necessity to access care and situated their health‐seeking behaviour within a framework of ‘appropriateness’. Where parents sought unscheduled care was largely determined by timely access, and inability to secure a general practitioner (GP) appointment often led parents to access other services. Parents expressed a need for more support in navigating unscheduled care options.ConclusionsBetter resources to educate and support parents are required, and structural issues, such as accessibility to GPs, need to be addressed to enable parents to better navigate the unscheduled health system and manage their children''s health. The discourse around ‘appropriate’ and ‘inappropriate’ access to health care has permeated parental decision making when accessing unscheduled health care for their children. What constitutes appropriate access should be examined, and a shift away from this framing of health‐seeking behaviour may be warranted.Patient or Public ContributionThere was no explicit patient or public involvement. All authors hold experience as users of the health system.     

Understanding the prescription of antidepressants: a Qualitative study among French GPs

Background

The QUALICOPC (Quality and Costs of Primary Care in Europe) study aims to evaluate the performance of primary care systems in Europe in terms of quality, equity and costs. The study will provide an answer to the question what strong primary care systems entail and which effects primary care systems have on the performance of health care systems. QUALICOPC is funded by the European Commission under the "Seventh Framework Programme". In this article the background and design of the QUALICOPC study is described.

Methods/design

QUALICOPC started in 2010 and will run until 2013. Data will be collected in 31 European countries (27 EU countries, Iceland, Norway, Switzerland and Turkey) and in Australia, Israel and New Zealand. This study uses a three level approach of data collection: the system, practice and patient. Surveys will be held among general practitioners (GPs) and their patients, providing evidence at the process and outcome level of primary care. These surveys aim to gain insight in the professional behaviour of GPs and the expectations and actions of their patients. An important aspect of this study is that each patient's questionnaire can be linked to their own GP's questionnaire. To gather data at the structure or national level, the study will use existing data sources such as the System of Health Accounts and the Primary Health Care Activity Monitor Europe (PHAMEU) database. Analyses of the data will be performed using multilevel models.

Discussion

By its design, in which different data sources are combined for comprehensive analyses, QUALICOPC will advance the state of the art in primary care research and contribute to the discussion on the merit of strengthening primary care systems and to evidence based health policy development.     

Knowledge sharing to support long‐term condition self‐management—Patient and health‐care professional perspectives

BackgroundIncreased self‐management is a suggested solution to the burden on health‐care services of long‐term conditions (LTCs). This requires effective sharing of knowledge between health‐care professionals and patients, and is an underexplored area.ObjectiveTo understand how patients and health‐care professionals (HCPs) share and utilize knowledge in the social context of health‐care interactions within long‐term condition management.MethodsThematic analysis of 93 hours of observations of health‐care interactions and 33 semi‐structured interviews involving patients, carers and HCPs.Results3 themes were identified: normative social roles, differing professional roles and the value of knowledge. Knowledge sharing was a complex process heavily influenced by social and cultural norms within the health‐care context. Not all knowledge was easily shared within routine health‐care interactions.DiscussionThe social context in which health‐care is practised influences what knowledge is shared and how this is achieved. It favours sharing of clinical knowledge from HCPs to patients and disadvantages patients in their ability to share their unique knowledge based on lived experience of illness. The opportunities for patients to be supported in their knowledge, skills and confidence within routine health‐care interactions are limited.ConclusionBoth patients and HCPs need support to recognize the characteristics of the social context of health care and their understandings of their roles within this in order for them to move beyond accepted behaviours to develop more effective partnership working.Patient or Public ContributionPatients were involved in initial design of the study, particularly ethics of ethnographic observation.     

Psychometric characteristics of the health care empowerment questionnaire in a sample of patients with arthritis and rheumatic conditions

BackgroundPatient empowerment can improve health‐related outcomes and is important in chronic conditions, such as arthritis. This study aimed to validate the Health Care Empowerment Questionnaire (HCEQ), a patient‐reported experience measure of empowerment, for use with patients with arthritis and other rheumatic diseases.MethodsThe HCEQ measures Patient Information Seeking (or Involvement in Decisions) and Healthcare Interaction Results (or Involvement in Interactions) and asks respondents to answer questions in two ways: whether they feel something happened and its importance to them. Face validity was assessed through qualitative data (n = 8, nominal group technique; n = 55, focus groups). Measure structure was assessed through confirmatory factor analysis (CFA); internal consistency was also assessed (n = 9226). Test‐retest reliability was assessed with sub‐sample of participants (n = 182).ResultsWe found adequate face validity of the HCEQ for patients with arthritis. The CFA indicated good fit to the data for the two‐factor structure of the HCEQ (RMSEA = 0.075; CFI = 0.987; TLI = 0.978; SRMR = 0.026). Internal consistency was strong (α=0.94 for both subscales). Test‐retest reliability was moderate for Patient Information Seeking (ICC=0.67) and good for Healthcare Interaction Results (ICC=0.77).ConclusionsThe HCEQ, with modifications, demonstrated promising psychometric properties within this sample, laying the foundation for further assessment. This work supports the HCEQ as an appropriate instrument for examining experiences with and perceived importance of empowerment in individuals with arthritis and other rheumatic conditions.Patient ContributionPatients contributed to the assessment of face validity. As a measure of patient empowerment, the HCEQ’s use can enable further participation of patients in health care.     

Reluctant educators and self‐advocates: Older trans adults’ experiences of health‐care services and practitioners in seeking gender‐affirming services

BackgroundTrans‐identifying individuals experience unique barriers and challenges in negotiating health‐care systems due to the cisnormative attitudes and practices which obstruct the receipt of trans‐inclusive care. To date, there has been little exploration of older trans consumers’ experiences of contemporary health‐care services when seeking to transition medically in later life.ObjectivesQualitative findings are presented from a study of trans ageing and trans‐related health and social care needs in Wales, UK (2016‐18). The objectives are to (1) examine supportive and obstructive points of interaction with health‐care professionals, and (2) identify key learning messages for improving trans‐related health care from the perspectives of trans‐identifying adults in later life.DesignTrans‐identifying participants self‐selected to take part in two interviews—a life‐history interview and a semi‐structured interview. Interview data were analysed thematically using the framework method approach.Setting and participantsThis paper focuses on the accounts of 19 participants (50‐74 years of age) who identified as trans and were seeking to transition medically in mid‐ to later life.ResultsFindings indicate how older trans patients are positioned as reluctant educators for GPs in primary care settings and illustrate the transphobic practices and cisnormative assumptions encountered across health‐care interactions and systems that impede their journey of transitioning in later life.Discussion and conclusionsMessages from this study speak to the importance of improving professionals’ knowledge of gender identity diversity across the life course and making changes at a systemic level in redressing cisnormative assumptions and systems that reinforce inequities on the basis of gender identity.     

Patients with low activation level report limited possibilities to participate in cancer care

BackgroundCancer care trajectories are often complex, with potent multimodality treatments and multiple interactions with health care providers. Communication and coordination are challenging and the patients'' responsibilities to take on more active roles in their own care are increasing.ObjectiveThis study aimed to investigate associations between patient activation level and participation in cancer care, sociodemographic characteristics, clinical data, health‐related quality of life (HRQoL) and helpfulness of received information.MethodsIn this cross‐sectional population‐based study, patients completed questionnaires on patient activation, perceived participation, HRQoL, helpfulness of received information and sociodemographic characteristics. Responses to the patient activation measures (PAMs) were classified into four levels (higher levels indicating more activation). Data on age, sex and cancer diagnosis were collected from the Swedish Cancer Register.ResultsData from 682 patients were analysed. On comparing patients at PAM levels 1 and 4, the latter reported significantly higher possibilities to influence care decisions (46.6% vs. 20.8%) and to ask questions regarding treatment and care (93.4% vs. 68.4%). Patients at PAM level 4 reported wanting to influence decision‐making to a higher extent, compared with patients at other PAM levels, and reported clinically significantly higher HRQoL. No significant differences were found regarding sociodemographic characteristics.ConclusionWe found strong associations between perceived patient participation and activation levels, with limited possibility for participation among those with lower activation levels.Patient or Public ContributionDiscussions with patient representatives have raised the importance of participation. The preliminary findings were presented and discussed in a workshop with representatives from 21 cancer patient advocacy groups.     

Proposals for person‐centred care in the COVID‐19 era. Delphi study

BackgroundIn this COVID‐19 era, we need to rethink the criteria used to measure the results of person‐centred care strategies.ObjectiveTo identify priorities, and criteria that health services can use to pursue actually the goal of achieving person‐centred care.DesignThree‐phase online qualitative study performed during May–July of 2020 using the Delphi technique.Setting and ParticipantsAn online platform was used for a consensus meeting of 114 participants, including health planning experts, health‐care institution managers, clinicians and patients.Main Outcome MeasuresCriteria and indicators for the achievement of person‐centred care.Main ResultsThe first round began with 125 proposals and 11 dimensions. After the second round, 28 ideas reached a high level of consensus among the participants. Ultimately, the workgroup agreed on 20 criteria for goals in the implementation of person‐centred care during the COVID‐19 era and 21 related indicators to measure goal achievement.DiscussionNine dimensions and 28 priorities were identified. These priorities are also in accordance with the quadruple aim approach, which emphasizes the need for care for health‐care professionals, without whom it is impossible to achieve a better quality of care.ConclusionsPerson‐centred care continues to be a key objective. However, new metrics are needed to ensure its continued development during the restoration of public health services beyond the control of COVID‐19.Patient or Public ContributionTwelve professionals and patient representatives participated voluntarily in the construction of the baseline questionnaire and in the selection of the criteria and indicators using an online platform for consensus meetings.     

Assessing and promoting partnership between patients and health‐care professionals: Co‐construction of the CADICEE tool for patients and their relatives

ContextPartnership between patients and health‐care professionals (HCPs) is a concept that needs a valid, practical measure to facilitate its use by patients and HCPs.ObjectiveTo co‐construct a tool for measuring the degree of partnership between patients and HCPs.DesignThe CADICEE tool was developed in four steps: (1) generate key dimensions of patient partnership in clinical care; (2) co‐construct the tool; (3) assess face and content validity from patients’ and HCPs’ viewpoints; and (4) assess the usability of the tool and explore its measurement performance.ResultsThe CADICEE tool comprises 24 items under 7 dimensions: 1) relationship of Confidence or trust between the patient and the HCPs; 2) patient Autonomy; 3) patient participation in Decisions related to care; 4) shared Information on patient health status or care; 5) patient personal Context; 6) Empathy; and 7) recognition of Expertise.Assessment of the tool''s usability and measurement performance showed, in a convenience sample of 246 patients and relatives, high face validity, acceptability and relevance for both patients and HCPs, as well as good construct validity.ConclusionsThe CADICEE tool is developed in co‐construction with patients to evaluate the degree of partnership in care desired by patients in their relationship with HCPs. The tool can be used in various clinical contexts and in different health‐care settings.Patient or Public ContributionPatients were involved in determining the importance of constructing this questionnaire. They co‐constructed it, pre‐tested it and were part of the entire questionnaire development process. Three patients participated in the writing of the article.     

Patient representatives: Crucial members of health‐care working groups facing an uncertain role and conflicting expectations. A qualitative study

BackgroundPatient representatives (PRs) have been involved for decades in health‐care development, and their participation is increasingly sought in health‐care working groups (HCWGs) on every level. However, information on how the role could be further developed and teamwork improved remains sparse.ObjectiveTo explore the role of patient representatives in clinical practice guideline (CPG) monitoring groups, to describe their contributions and identify possibilities of improvement.DesignQualitative design using semi‐structured interviews analysed by content analysis.Setting and participantsInterviews were conducted with 11 PRs, 13 registered nurses, and 9 physicians, all members of national committees monitoring CPGs for cancer in Sweden.ResultsMost participants considered the PR role important but mentioned several problems. PRs’ contributions were hampered by uncertainties about their role, the low expectations of other group members and their sense that their contributions were often disregarded. Some professionals questioned whether PRs were truly representative and said some topics could not be discussed with PRs present.ConclusionThis study highlights the fundamental problems that remain to be solved despite the long involvement of PRs in HCWGs. Even though the PR role and teamwork differed between the groups, most PRs need to be empowered to be actively involved in the teamwork and have their engagement and knowledge fully utilized. Enhancing teamwork through clarifying roles and expectations could lead to more inclusive and equal teams able to work more effectively towards the goal of improving health care.Patient or public contributionPRs were information givers in data collection.     

Shared decision making in consultations for hypertension: Qualitative study in general practice

BackgroundHypertension is mainly managed in primary care. Shared decision making is widely recommended as an approach to treatment decision making. However, no studies have investigated; in detail, what happens during primary care consultations for hypertension.AimTo understand patients’ and clinicians’ experience of shared decision making for hypertension in primary care, in order to propose how it might be better supported.DesignLongitudinal qualitative study.SettingFive general practices in south‐west England.MethodInterviews with a purposive sample of patients with hypertension, and with the health‐care practitioners they consulted, along with observations of clinical consultations, for up to 6 appointments. Interviews and consultations were audio‐recorded and observational field notes taken. Data were analysed thematically.ResultsForty‐six interviews and 18 consultations were observed, with 11 patients and nine health‐care practitioners (five GPs, one pharmacist and three nurses). Little shared decision making was described by participants or observed. Often patients’ understanding of their hypertension was limited, and they were not aware there were treatment choices. Consultations provided few opportunities for patients and clinicians to reach a shared understanding of their treatment choices. Opportunities for patients to engage in choices were limited by structured consultations and the distribution of decisions across consultations.ConclusionFor shared decision making to be better supported, consultations need to provide opportunities for patients to learn about their condition, to understand that there are treatment choices, and to discuss these choices with clinicians.Patient or Public ContributionA patient group contributed to the design of this study.     

Determinants of patient activation and its association with cardiovascular disease risk in chronic kidney disease: A cross‐sectional study

BackgroundPatient activation describes the knowledge, skills and confidence in managing one''s own health. Promoting patient activation is being prioritized to reduce costs and adverse outcomes such as cardiovascular disease (CVD). The increasing prevalence of chronic kidney disease (CKD) presents a need to understand the characteristics that influence patient activation and the effect on health outcomes.DesignCross‐sectional study.Setting and participantsPatients with non‐dialysis CKD recruited from 14 sites (general nephrology and primary care) in England, UK.Outcome measuresPatient activation was measured using the PAM‐13. Demographic and health‐related variables, self‐reported symptom burden, health‐related quality of life (HRQOL), socioeconomic status (SES), were assessed as determinants of patient activation. Major CVD risk factors included hypertension, dyslipidaemia, obesity and hyperkalaemia.Results743 patients were included (eGFR: 32.3 (_SD17.1) mL/min/1.73 m², age 67.8 (_SD13.9) years, 68% male). The mean PAM score was 55.1 (_SD14.4)/100. Most patients (60%) had low activation. Those with low activation were older (P<.001), had lower eGFR (P = .004), greater number of comorbidities (P = .026) and lower haemoglobin (P = .025). Patients with low activation had a 17% greater number of CVD risk factors (P < .001). Risk factors in those with low activation were being older (P < .001) and having diabetes (P < .001).ConclusionThis study showed that only a minority of CKD patients are activated for self‐management. Our findings help better understand the level of activation in these patients, particularly older individuals with multimorbidity, and further the knowledge regarding the characteristics that influence activation.Patient or Public ContributionPatients were involved in the design of main study.     

A scoping review of practice recommendations for clinicians’ communication of uncertainty

BackgroundHealth‐care providers increasingly have to discuss uncertainty with patients. Awareness of uncertainty can affect patients variably, depending on how it is communicated. To date, no overview existed for health‐care professionals on how to discuss uncertainty.ObjectiveTo generate an overview of available recommendations on how to communicate uncertainty with patients during clinical encounters.Search strategyA scoping review was conducted. Four databases were searched following the PRISMA‐ScR statement. Independent screening by two researchers was performed of titles and abstracts, and subsequently full texts.Inclusion criteriaAny (non‐)empirical papers were included describing recommendations for any health‐care provider on how to orally communicate uncertainty to patients.Data extractionData on provided recommendations and their characteristics (eg, target group and strength of evidence base) were extracted. Recommendations were narratively synthesized into a comprehensible overview for clinical practice.ResultsForty‐seven publications were included. Recommendations were based on empirical findings in 23 publications. After narrative synthesis, 13 recommendations emerged pertaining to three overarching goals: (a) preparing for the discussion of uncertainty, (b) informing patients about uncertainty and (c) helping patients deal with uncertainty.Discussion and conclusionsA variety of recommendations on how to orally communicate uncertainty are available, but most lack an evidence base. More substantial research is needed to assess the effects of the suggested communicative approaches. Until then, health‐care providers may use our overview of communication strategies as a toolbox to optimize communication about uncertainty with patients.Patient or public contributionResults were presented to stakeholders (physicians) to check and improve their practical applicability.     

A nationwide participatory programme to measure person‐centred hospital care in Italy: Results and implications for continuous improvement

BackgroundPatient‐centredness has been targeted by the Italian government as a key theme for the future development of health services.ObjectiveMeasuring patient‐centred health services in partnership with citizens, health professionals and decision makers.DesignNational participatory survey in a large test set of hospitals at national level.Setting and participantsA total of 387 hospital visits conducted in 16 Italian regions by over 1,500 citizens and health professionals during 2017‐2018.Main variables and outcome measuresAn ad hoc checklist was used to assess person‐centredness in hospital care through 243 items, grouped in 4 main areas, 12 sub‐areas and 29 person‐centred criteria (scored 0‐10). GEE linear multivariate regression was used to explore the relation between hospital characteristics and person‐centredness.ResultsPerson‐centred scores were moderately high, with substantial variation overall (median score: 7.0, range: 3.2‐9.5) and by area (Care Processes: 6.8, 2.0‐9.8; Access: 7.4, 2.7‐9.7; Transparency: 6.7, 3.4‐9.5 and Relationship: 7.3, 0.8‐10.0). Multivariate regression found higher scores for increasing volumes of activity (quartile increase: +0.21; 95% CI: 0.13, 0.29) and lower scores in the south and islands (−1.03; −1.62,‐0.45).DiscussionThe checklist has been applied successfully by over 1,500 collaborators who assessed hospitals in 16 distinct Regions and Autonomous Provinces of Italy. Despite an overall positive mark, all scores were highly variable by location and hospital characteristics.Conclusion and patient or public contributionA national participatory programme to improve patient‐centredness in Italian hospitals highlighted critical areas with the direct input of citizens.     

Preference‐based patient participation for most,if not all: A cross‐sectional study of patient participation amongst persons with end‐stage kidney disease

BackgroundPatient participation is considered central for good healthcare. Yet, the concept is not fully understood when it comes to patients'' experiences of participation in conjunction with their preferences, particularly in long‐term healthcare. The aim of this study was to investigate the extent and variation of preference‐based patient participation in patients with end‐stage kidney disease (ESKD).MethodsA cross‐sectional study was conducted with 346 patients in renal care. The main variables were patients'' preferences for and experiences of patient participation, determined using the Patient Preferences for Patient Participation tool, the 4Ps. Analyses identified the degree of match between preferences and experiences, that is, the preference‐based patient participation measure.ResultsOverall, 57%–84% of the patients reached a sufficient level of preference‐based patient participation on the items, while 2%–12% reached an insufficient level. A mismatch indicated either less or more participation than preferred; for example, 40% had less experience than preferred for taking part in planning, and 40% had more than preferred for managing treatment.ConclusionThis study shows that, although many patients reach a sufficient level of preference‐based patient participation, this is not the case for all patients and/or attributes. Further opportunities for a mutual understanding of patients'' preferences are needed for healthcare professionals to support person‐centred patient participation.Patient or Public ContributionThe 4Ps is manufactured in collaboration with people with experience of the patient role, and persons living with ESKD were engaged in identifying their preferences and experiences of participation in renal care.     

Approaches to optimize patient and family engagement in hospital planning and improvement: Qualitative interviews

BackgroundPatient engagement (PE) in health‐care planning and improvement is a growing practice. We lack evidence‐based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals.MethodsThis study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis.ResultsParticipants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health‐care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs.ConclusionThis research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On‐going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches.Patient or public contributionThree patient research partners with hospital PE experience informed study objectives and interview questions.