How healthcare professionals experience patient participation in designing healthcare services and products. A qualitative study in the field of spinal cord injury in Switzerland

Objectives

This study explored healthcare professionals’ accounts of patient participation, focusing particularly on aspects related to patients’ contributions to the planning and design of healthcare services and products. It aimed to determine (1) how healthcare professionals experience patient participation, (2) what factors, in their view, may inhibit or promote it; and (3) through what channels they think it can take place.

Participation of family members in ward rounds: Attitude of medical staff, patients and relatives

OBJECTIVE: To assess the attitude of medical staff, patients and their relatives to the presence of FMs in WRs. METHODS: This prospective study was performed in an Internal Medicine Department in Israel. WRs were conducted without (phase 1) and with (phase 2) the presence of FMs. Questionnaires were completed by staff members (N = 26, 23), patients (N = 26, 35) and FMs (N = 32, 40) during phases 1 and 2, respectively. RESULTS: 82.6%, 96% and 96.7% of staff, patients and relatives, respectively, expressed a positive attitude towards the participation of FMs in WRs. Staff members became significantly more positive about the concept after having undergone the experience. Patients believed it contributed to a better understanding of their disease and FMs felt it provided them with an opportunity to participate in medical decision-making. CONCLUSION: Hospitalized patients would like their FMs to participate in WRs. Staff members were reluctant at first, but developed a more positive attitude towards the idea after the experience. PRACTICE IMPLICATIONS: Incorporating FMs into WRs is plausible, though adjustment of WRs' routine to the change will be needed. This move might increase patients' satisfaction from WRs.     

A new scale informed by the Reciprocal-Engagement Model for quality evaluation of genetic counselling by patients: Development and initial validation

Monitoring the quality of genetic counselling is essential to ensure appropriate provision. This study describes the development and initial psychometric validation of a novel scale for genetic counselling quality evaluation by patients. A deductive approach was taken to formulate scale items. Exploratory factor analysis with the principal axis factoring method was used to assess the scale's factor structure (n = 118). Internal consistency (Cronbach's Alpha) was also examined. Exploratory factor analysis resulted in a single overarching construct consisting of seven factors, which account for 59% of the variance explained. Items showed, in general, strong factor loadings (>0.5). Some items focused on patient satisfaction with services provision did not load onto the factors. Thus, another factor analysis was performed with these items, which resulted in one-factor. The identified factor accounted for 57% of variance explained, and communalities were strong (≥0.5) for most items. Cronbach's alpha score for the scale was 0.85, indicating high internal consistency. Factors were significantly and moderately interrelated (from r = 0.31 to r = 0.71). Further studies are needed to establish the psychometric validity of the scale.     

Definitions and use of the teach-back method in healthcare consultations with patients: A systematic review and thematic synthesis

ObjectiveTo review and synthesise definitions of the teach-back method in the literature. The second aim is to synthesise the barriers, facilitators and perceptions of teach-back use in healthcare consultations with patients.MethodsA systematic review and thematic synthesis following Braun and Clarke’s method.ResultsThe primary search found 1429 citations and the secondary search added 221 citations. Screening identified 66 citations eligible for data extraction. We contrasted and synthesised operational definitions of the teach-back method. The synthesis generated seven themes related to healthcare provider (HCP) and patient perceptions of teach-back (effectiveness, stigma and time-related perceptions), the universal application of teach-back, patient health outcomes and healthcare provider training.DiscussionOperational definitions of the teach-back method varied in the literature and contained implied steps. HCPs and patient perceptions of teach-back operated as both enablers and barriers to its use. HCPs training programs for the teach-back method were identified as beneficial for altering HCPs perceptions about the method and increased its use with patients.Practice implicationsStandardising operational definitions of the teach-back method can support replicability of research and enhance HCPs communication skills training programs. HCPs training on teach-back use can support the increased use of the technique with broader patient populations.     

The need for control,safety and trust in healthcare: A qualitative study among adolescents and young adults exposed to family violence

ObjectiveAdolescents and young adults (AYA) exposed to family violence are in need of professional healthcare. However, only one-third of them seek professional help.MethodsThis study investigates healthcare needs of twelve AYA exposed to family violence. Semi-structured face-to-face interviews using purposive sampling to reach diversity. Open thematic coding was used to identify the most important themes.ResultsParticipants experienced emotional problems, distrusted others and felt unsafe as an important consequence of their exposure to family violence. All participants expressed a need for help, but as help involved informing others, they considered it unsafe. Trust, safety and control regarding healthcare interventions emerged as vital needs. The anonymity of the Internet was considered as offering safeguards in seeking and receiving help.ConclusionTrust, safety and control regarding healthcare interventions emerged as vital needs for AYA exposed to family violence. The great importance of being in control of healthcare interventions has not been reported earlier. A personal bond can lower the need for control.Practice implicationsTo comply with the three basic needs, healthcare providers should grant AYA as much control as possible while still monitoring patient safety. The Internet can be an important resource for offering low-threshold professional and peer support.     

Exercise, physical activity and healthcare utilization: A review of literature for older adults

The impacts of exercise and physical activity on healthcare utilization of older adults have been studied using either (1) clinical trials or retrospective cohort studies focusing on older people who participated in various exercise intervention programs, or (2) survey data.This review focuses on both streams of studies, which cover the topic for adults aged 65 and older. The paper reviews the literature on physical activity and its implications for healthcare system, and discusses potential directions for future research by highlighting the limitations of the existing studies.Although there are significant variations in samples and methods used, both streams of reviewed literature provide evidence that physical activity leads to lower utilization of healthcare services. Given differences in methods and samples in these studies, estimated effect of physical activity on healthcare utilization shows significant variation from one study to another. These results, therefore, cannot be generalized to justify population wide exercise intervention programs for older adults. Additional studies are needed to provide more robust estimates for the effects of exercise, and to examine the feasibility of population wide policies that aim to encourage participation of older adults in physical activity.     

Engaging patients in population-based chronic disease management: A qualitative study of barriers and intervention opportunities

ObjectiveCardiovascular disease (CVD) continues to be a leading cause of morbidity in the U.S. Managing CVD risk factors, such as diabetes or hypertension, can be challenging for many individuals. We investigated the barriers experienced by patients who persistently struggled to reach their CVD risk factor control goals.MethodsThis qualitative study examined patient, clinician, and researcher observations of individuals’ experiences in a chronic disease management program. All participants (n = 332) were enrolled in a clinical trial testing a skills-based group intervention seeking to improve healthcare engagement. Data were analyzed through a general inductive approach and resulting themes were structured along the Capability-Opportunity-Motivation-Behavior framework.ResultsAnalyses identified care engagement barriers related to participants’ communication skills and activation, care team relationship processes, and emotional factors. Although most participants reported benefitting from skills training, persistent barriers included distrust of their providers, shame about health challenges, and dissatisfaction with care team interactions that were described as impersonal or unresponsive.Conclusions and practice implicationsEfforts to support engagement in CVD risk factor management programs should address whether patients and their care team have the necessary skills, opportunities and confidence to proactively communicate health needs and engage in non-judgmental interactions for goal-setting, rapport-building, and shared decision-making.     

The information needs of partners and family members of cancer patients: A systematic literature review

Objective

This review examined the extent to which the information needs of partners and family members of cancer patients has been addressed in the literature.

Methods

We conducted a systematic search of four databases for papers published between 1998 and 2008 which assessed the information needs of partners and/or family members of adult cancer patients.

Results

Thirty-two papers were included in the review. Eleven categories of information need were identified. There was a predominant focus on breast or prostate cancer, leaving a knowledge gap in relation to other cancers. Few papers moved beyond the diagnosis and initial treatment phase, and most did not distinguish between met and unmet needs. Those that did, indicated that partners/family members are more likely to have unmet needs for information about supportive care than for medical information. The concept of ‘information need’ was generally poorly developed and theorised in the papers.

Conclusion

Establishing the information needs of partners and family members of cancer patients is an important, but as yet neglected, area of research. In order to develop our understanding of this area more empirical research, with sound conceptual and theoretical foundations is required.     

Analysis of the relationship among health awareness and health literacy,patient satisfaction levels with primary care in patients admitting to primary care health centers

Objective

The aim of the study was to examine the relationships between health literacy, primary care satisfaction levels and health awareness of the patients who were admitted to primary care centers (Family Health Centers).

The effects of additional care by a pulmonary nurse for asthma and COPD patients at a respiratory outpatient clinic: results from a double blind, randomized clinical trial

OBJECTIVE: To assess the effects of additional information based nursing care program in the treatment of asthma and COPD patients at a pulmonary outpatient clinic. METHODS: In a double blind, randomized clinical trial, 191 patients were allocated to an additional care group or control group. Patients in the intervention group received a protocol-based education program on individual basis by a pulmonary nurse on individual basis (average duration 60 min per patient). All patients were masked for the trial objectives. Effectiveness was expressed in terms of knowledge, inhalation technique, self-management, exacerbation rate (primary outcomes), and health-related quality of life and satisfaction with care received (secondary outcomes). The time interval between the initial and final assessments was 6 months. RESULTS: Ninety-seven patients were randomized into the additional care group and 94 into the control group, of which 157 had a complete dataset. (Un)adjusted analyses did not show differences between treatment groups in terms of knowledge, inhalation technique, self-management, health-related quality of life, and satisfaction with care. Multivariate logistic regression adjusting for baseline covariates showed a significant treatment effect with regard to exacerbation rate (odds ratio=0.35; 95% confidence limits: 0.13/0.94, p=0.04). CONCLUSION: With the exception of exacerbation rate, we could not demonstrate efficacy of additional nursing care in a broad range of outcome parameters. PRACTICE IMPLICATIONS: At present we do not recommend to implement our patient-tailored education program in daily practice.     

The meaning of rapport for patients,families, and healthcare professionals: A scoping review

ObjectiveRapport is considered fundamental to clinical relationships but is a concept which is rarely defined. This review explores how rapport is defined, characterised, and operationalised in healthcare.MethodsA scoping review methodology was used. Data were synthesised using thematic analysis. The review process adhered to the Preferred Reporting System for Meta-Analysis for Scoping reviews (PRISMA-ScR).ResultsMedline, CINAHL, and psychINFO were searched with thirty-four studies meeting inclusion criteria. Results were presented in two themes: The meanings of rapport and the implications for building rapport.ConclusionsThis scoping review found rapport has no commonly shared definition or conceptualisation in the reviewed research. At the same time rapport is operationalised and characterised. Factors that facilitate, and hinder rapport-building were identified. Having a consistently used definition and conceptualisation will benefit the research that is needed into patient and family experiences and outcomes of rapport.Practice implicationsIt is crucial for health professionals to incorporate simple kind gestures into practice to facilitate rapport. Equally it is necessary for health professionals to review their practice for dismissive, avoiding behaviours that impede rapport-building and consider how they spend their time with patients.     

A group-based multi-professional education programme for family members of patients with chronic heart failure: effects on knowledge and patients' health care utilization

Objective

The aim was to investigate if family members of patients with chronic heart failure (CHF) increased knowledge about CHF through a group-based multi-professional educational programme and whether there was an effect on patients’ health care utilization.

Methods

Family members (n = 128) were randomly assigned to intervention-group (IG) who received CHF education programme or control-group (CG) who received information according to hospital routines. Programme effects were evaluated with CHF knowledge questionnaire, patient readmissions and number of days hospitalised during 18 months.

Results

Knowledge about CHF increased in both groups, significantly higher in IG at second assessment (IG 16 ± 1.9 vs. CG 14.9 ± 2.1, p = 0.006), and knowledge maintained at third assessment. In IG 17 patients were re-admitted at least once and 28 patients in CG due to CHF (p = 0.085). There were no differences in frequency of readmissions or number of days hospitalised.

Conclusion

A group-based multi-professional education programme increased family members’ knowledge about CHF. Despite this, effect on patient's health care utilization could not be seen during follow-up period.

Practical implications

We suggest that CHF education programmes for family members should be provided at clinics, with information preferably repeated 2–3 times during a period of six months to maintain knowledge level.     

Treatment decision-making in the medical encounter: Comparing the attitudes of French surgeons and their patients in breast cancer care

Objectives

To explore attitudes of French surgeons and their patients towards treatment decision-making (TDM) in the medical encounter.

Methods

Surgeons involved in early stage breast cancer and their patients treated in a French cancer care network received a cross-sectional survey questionnaire containing examples of four different approaches to TDM: paternalistic, “some sharing”, informed TDM and, shared TDM.

Results

Surgeons’ interaction styles were clearly distributed among paternalistic, shared and mixed. The paternalistic approach seemed to be associated with private rather than public practice and with less professional experience. Patients reported a rather low level of participation in TDM, varying by socio-demographic characteristics. One third of patients were dissatisfied with the way their treatment decision had been made.

Conclusion

Most surgeons reported adopting the “some sharing” approach. However, one patient out of three reported that they would have liked to participate more in the TDM process.

Practice implications

Surgeons need to ask patients what their preferences for involvement in TDM are and then think about ways to accommodate both their own and patients’ preferences regarding the TDM process to be used in each encounter. In addition, decision aids could be offered to surgeons to help them discuss treatment options with their patients.     

Characterizing explanatory models of illness in healthcare: development and validation of the CONNECT instrument

Objective

A growing body of qualitative and quantitative research suggests that individual patients and physicians often have differing perspectives, or ‘explanatory models,’ regarding the patient's health condition or illness. Discordance between explanatory models may lead to difficulties in communication and poor disease outcomes. However, due to a lack of tools to systematically measure concordance in patient and physician explanatory models, a large-scale study of explanatory models of illness has not been previously possible. The objective of this project was to develop and pilot-test a survey-based tool (the CONNECT Instrument) that measures salient aspects of explanatory models of illness.

Methods

We conducted a multi-method survey development project that included qualitative and quantitative item development, refinement, pilot testing, and psychometric evaluation. We evaluated the instrument in two unique, consecutive cohorts of primary care patients in a variety of private and public settings in Houston, TX. We also used the instrument to examine concordance between patient and physician explanatory models in the second cohort.

Results

The final version of the CONNECT Instrument contains nineteen items that focus on six dimensions of explanatory models. Cronbach alphas ranged from 0.65 to 0.89 for the six CONNECT dimensions. The instrument demonstrated evidence of criterion-related validity when individual CONNECT dimension scores were compared with scores from previously published instruments, and demonstrated expected differences between patients ‘and physicians’ explanatory models of illness.

Conclusion

The CONNECT instrument is a tool with good psychometric properties that enables researchers to measure important aspects of patients ‘and physicians’ explanatory models of illness. Our continuing work will focus on gathering additional validity evidence and evaluating associations between explanatory model concordance and health outcomes.

Practice implications

The CONNECT instrument can be used to improve quality in clinical practice and medical education by measuring an important intermediate outcome in the chain of factors leading to patient trust, satisfaction, and adherence.     

Patient-reported quality of care in anthroposophic and integrative medicine: A scoping review

ObjectiveTo investigate how, and to what extent, patient-reported quality of care is measured in Anthroposophic and Integrative Medicine (AM/IM).MethodsScoping review of evaluation studies of patient-reported quality of care and development studies of PREMs and/or PROMs in AM/IM, using five stages of Arksey’s methodological framework. Search strategy: Literature search in twelve relevant databases. Data extraction: Basic information, added categories: Focus; PREMs/PROMs; Evaluation measures; Patient involvement; Use of results.ResultsSixty-four included studies: 30 quantitative, 20 qualitative and 14 mixed-methods studies. Quantitative studies showed a wide variety of instruments and qualitative studies showed a meaningful list of evaluation themes. Most prevalent themes: Agency & Empowerment; Patient-provider relationship; Perceived effectiveness; Coping & Psychological functioning; Inner awareness; Meaning; and General wellbeing. Seven studies report concrete, coherent, patient-derived evaluation measures with emphasis on PROMs and/or PREMs.ConclusionPatient-reported quality of care was not measured in a standardised way. Knowledge gap: in general, quantitative studies lack patient-derived measures and qualitative studies lack development of concrete evaluation measures. Many AM/IM evaluation aspects connect with patient-centred care.Practice implicationThe international field of AM/IM would benefit from the development of a core set of validated PROMs and PREMs to further enhance its scientific underpinning.     

Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement

ObjectiveThis essay discusses applying the Conceptual Framework for Patient and Family Engagement to partnerships with patients and consumers to increase their use of research evidence in healthcare decisions. The framework’s foundational principles hold that engagement occurs on a continuum across all levels of healthcare—from direct care to policymaking—with patients and healthcare professionals working in full partnership and sharing responsibility for achieving a safe, high-quality, efficient, and patient-centered healthcare system.DiscussionResearch evidence can serve as a critical decision-making tool in partnerships between patients and health professionals. However, as the framework suggests, without patient and consumer engagement in the design, planning, interpretation, and dissemination of research findings, it is unlikely that the broader consumer population will find research evidence useful, much less use it, to guide their healthcare decisions. Understanding what factors influence patient and consumer engagement can lead to effective strategies that enable meaningful partnerships between patients and researchers.ConclusionUnderstanding patient and consumer perspectives of research evidence is critical to engaging them in meaningful partnerships that produce actionable research findings that they can in turn use in partnership with health professionals to improve their own health and the healthcare system as a whole.