A national research centre for the evaluation and implementation of person‐centred care: Content from the first interventional studies

Abstract Background Person‐centred care (PCC) has been suggested as a potential means to improve the care of patients with chronic and long‐term disorders. In this regard, a model for PCC was developed by the University of Gothenburg Centre for Person‐Centred Care (GPCC). Objective The present study aimed to explore the theoretical frameworks, designs, contexts and intervention characteristics in the first 27 interventional studies conducted based on the ethics for person‐centredness provided by the GPCC. Design Cross‐sectional study. Setting and participants A questionnaire to the principal investigators of the 27 intervention studies financed by the GPCC and conducted between 2010 and 2016. Main outcome measures Theoretical frameworks, contexts of studies, person‐centred ethic, and outcome measures. Results Most of the interventions were based on the same ethical assumptions for person‐centredness but theories and models in applying the interventions differed. All studies were controlled; 12 randomized and 15 quasi‐experimental. Hospital in‐ and outpatient and primary care settings were represented and the outcome measures were related to the specific theories used. A complexity in designing, introducing and evaluating PCC interventions was evident. Conclusion The frameworks, designs and interventions in the studies were in line with the established ethical basis of PCC, whereas outcome measures varied widely. Consensus discussions among researchers in the field are needed to make comparisons between studies feasible. Patient or public contributions Patients or the public made no direct contributions, although most of the studied projects included such initiatives.


| INTRODUC TI ON
Healthcare systems need to be re-organized to provide high-quality care without increased costs to an ageing population with a high prevalence of chronic and long-term disorders. 1 Many western countries face numerous challenges in which the demand for health care is expected to steadily increase because of demographic and epidemiological changes. 2 Swedish health care, compared with other countries, performs relatively well regarding medical care. 1 However, even in Sweden long waiting times for care, health inequities based on socioeconomic factors and poor care coordination and lack of effective care models are all pressing issues. 1,3 In addition, continuity, availability, patient involvement and satisfaction with care are less than optimal. 3,4 According to some, the healthcare system needs to decrease costs and improve care quality. 5 Different solutions have been proposed to acknowledge the patient in health care, including patient-centred and person-centred care (PCC) initiatives. While both can be seen as alternatives to a more paternalistic biomedical paradigm, patient-centred care has been described as being more oriented to functioning and PCC as more directed to a meaningful life. 6 The University of Gothenburg Centre for Person-Centred Care (GPCC) (www.gpcc.gu.se) was established in February 2010 and formalized as the first centre in Europe to enhance and coordinate interdisciplinary research in PCC. 7 PCC is based on a philosophical approach to acknowledge and endorse the individual's resources, interests, needs and preferences.
From a PCC perspective, healthcare professionals see patients as partners in the planning and performing of the care process.
Moreover, PCC comprises shared responsibility, coordinated care and treatment. [8][9][10] In a previously published logic model for PCC, developed for the American Geriatrics Society, emphasis is also put on involving other family members in the care. 11 Early research has shown that an intervention based on PCC after surgery was successful in enhancing activities of daily living, improving care satisfaction and reducing hospital admissions. 12 Based on these findings, Ekman et al 9  hospital stay for patients with chronic heart failure without worsening functional performance or increasing the risk of readmission. 13 Previous evaluations have reported on how health professionals translate the gPCC to their clinical practice 14 and in what way involved participants understand the partnership created when using this model. 15 In these studies, healthcare professionals had to interpret how to apply the gPCC in their setting, 14 and that there are aspects of the partnership created through PCC not directly linked to what is written in the health plan. 15 However, less is known about whether uniformity exists as to how the gPCC and its intended effects have been operationalized and evaluated. A PCC intervention is a complex and challenging objective in that it contains several interacting components. 16,17 For example, the elements included in the interventions should be tailored to each participant and different clinical contexts for which the potential outcomes can be multiple and dispersed rather than linear. The design and evaluation of complex interventions need to be handled in relation to the complexity involved, 16 including understanding how the interventions are produced and affect participants and the settings in which they are tested and later implemented.
The present study aimed to explore the theoretical frameworks, designs, contexts, intervention characteristics and outcome measures in the first 27 interventional studies conducted based on the ethics for person-centredness provided by the GPCC.

| ME THODS
A questionnaire was developed to explore methodological aspects concerning design and evaluation in the 27 interventional studies. The questionnaire (Appendix A) contains questions on how the intervention was person-centred, 9 the development of the intervention (including any pilot studies conducted), 18

| Theoretical frameworks
Of the 27 studies, 22 reported person-centred ethics as the conceptual framework (Table 1). Other conceptual frameworks were self-efficacy (n = 5), interaction and communication theories (n = 5), theories on learning (n = 3) and theories on organization and leadership (n = 2). Varying definitions of health, symptoms and coping were reported as the theoretical framework in 11 studies.
Such definitions could be either profession-specific (eg nursing and occupational therapy) or generic. Six studies reported that the intervention was based on previous theory development, for example, through qualitative studies within the research group.  Examples of the two types of intervention are described in Figure 1.

| The content in relation to person-centredness
The qualitative analysis, which aspired to analyse the interventions professionals. This explicit documentation was educational or served to be supportive in the operationalization of the intervention. It was also reported that the interventions had to be adapted and modified to evidence-based practice, patient safety and available resources.

| Face-to-face or at a distance?
All interventions but four entailed a face-to-face intervention (n = 23) (

| Several health professionals represented
Of the 27 studies, 14 reported the provision of 2-7 health professions (the remaining interventions (n = 13) were provided by one profession, either a registered nurse (RN), physical therapist, speech therapist or a midwife).

| Outcome measures
In total, 163 outcome measures (specific questionnaires, health measures or other outcomes), ranging from 1 to 17 measurements per study, were reported (Table 3)

| Impact
The analysis of the 27 interventional studies in this paper indicates a need to prioritize research with comprehensive coverage of healthcare systems and not limit it to evaluating PCC within a single condition.
In the present overview of GPCC-funded studies, interventions in primary care were less common in contrast to previous reviews in which primary care was well represented. 33

| CON CLUS ION
The theoretical frameworks used in the 27 interventional studies were consistent with the established ethical basis of PCC. There was a large variety of designs and intervention characteristics, which is indicative of the different contextual conditions and complexity of interventions in each study. In addition, outcome measures varied widely across studies. Consensus discussions among researchers in the field, nationally and internationally, are needed to ensure that comparisons between studies are feasible and accurate.

ACK N OWLED G EM ENTS
The authors wish to express their gratitude to all respondents and researchers involved in conducting the included studies. Thanks also to Dr Leslie Shaps for language editing.

A PPEN D I X A
The questionnaire

Content Item
Background Provide the name and status of the project (planning phase, ongoing or closed)