Practice tools for person-centred care

1. Standard 

Patient involvement in health care – Minimum requirements for person-centred care

In 2016 GPCC initiated and led the work on a Swedish and European standard. The aim of the standard is to facilitate the introduction of and work and research on person-centred care. It was adopted at European level in June 2020. It is the first in Europe in the field. It can be used in a number of different ways by health care providers, patient organizations, researchers as well as other stakeholders. More information about the standard and links.

2. Tools for education and learning

Mutual meetings

A self-facilitating free education tool to support learning and implementation of person-centred care. This on-line course is available in English and Swedish (additional languages ​​are under development). Training is carried out in groups of four to six participants. The group is guided step by step through theory, discussion and exercises, which is also applied in their own daily work. The training is performed with very simple means. All that is needed is Post-it notes and place and time for conversations and practical exercises. The education can be used regardless of type healthcare or care setting.  Link to more information and the on-line course.

Support for dialogue on person-centred care [1] In order to initiate dialogue and reflection, GPCC and The Swedish Association of Local Authorities and Regions (SALAR) have produced a material to support conversations about person-centred care. In the material some common conceptions about person-centred care are presented, along with playful and humorous illustrations.

3. Tools supporting person-centred practice in health care

3.1 Patient information and support for patient-staff conversations

PCC communication guide [2,3,4]

A conversation guide or map to support person-centred conversations has been used in several GPCC projects where conversations between care staff and several different patient groups (adults with heart failure, adults with mental illness and fragile elderly patients) were carried out remotely by telephone. This tool has been used within the research groups.

Information material and support for conversations - diagnosis, operation and recovery associated with colorectal cancer [5,6]

A tool that aims to increase patients' preparation for cancer surgery and recovery afterwards and is also a support tool for staff to enable person-centred conversations with patients. The principles for this patient education material are primarily generic and can be applied in the development of new materials in other contexts.

3.2 Health planning documents/ health plans

Health planning document/health plan and care diary internal medicine ward/department

At the GPCC reference ward/department for person-centred care, an internal medicine ward/department at Sahlgrenska University Hospital, a health planning document has been used to support initial conversations, and the establishment of a health plan, for patients and staff. The patient then keeps the care plan and a care diary throughout the hospital stay. The patient can take the care diary home when leaving hospital.

Health plan psychosis clinic [7,8]

Routine for co-creation of health plan involving patient, contact person and doctor. This tool is part of the ongoing work with person-centred care at the psychosis clinic and aims to help staff find a common routine for involving patients in creating health plans.

Health plan physical activity [9,10]

An adapted health plan for function-oriented physiotherapy has been used in several GPCC projects for patients with generalized pain, fibromyalgia or rheumatoid arthritis.

3.3 Digital platforms/applications

PicPecc (Pictorial support in person-centred care for children) [11]

Platform/app that aims to make it easier for children and adolescents with long-term illness to initiate and communicate their own experience of symptoms. The intention is to facilitate person-centred care to promote management of symptoms, health and well-being. The app contains seven categories and four unique question types, which gives 28 different questions. The app has 11 different languages (Swedish, English, Danish, Icelandic, Afrikaans, Sesotho, IsiZulu, Setswana, Sepedi, Tshivenda, Xitsonga) and is available for free via the App Store and Google Play.

Platform for self-reporting/support for self-management for patients with high blood pressure [12]

Questions for self-reporting via a web-based system via mobile phone. The answers to the questions can be seen via the internet as graphs after login and are available to patients and healthcare professionals.

Min Hälsa (eng. My Health) [13,14,15,16]

Generic communication platform for person-centered care at a distance. The platform contains for example a menu where patients can send and receive messages from healthcare professionals and other persons they choose to invite, estimate their well-being, write notes, upload their health plan and access an archive of previous health plans as well as links to websites with relevant disease information.

Digital tool for emotional peer support for young cancer survivors [17]

The tool aims to provide emotional peer support for young cancer survivors. The tool was designed together with and for young cancer survivors and is intended to be used as a complement to other support provided in healthcare. Currently under development in collaboration with Ung Cancer (Young Cancer, a Swedish non-profit organisation that works to improve living conditions for young adults with cancer).

4. Tools for evaluation and measurement

Translation and cultural adaptation of Visual CARE measure

A tool for translation and cultural adaptation performed within a GPCC project. It consists of survey instruments for evaluating person-centering of children and young people. There are three versions, by proxy 0-6 years (10 questions), children 7-11 years (5 questions), and adolescents 12-17 years (10 questions).

The Generic Person-centred Care Questionnaire (GPCCQ) [18]

This is a tool for evaluating patients' experience of person-centred care based on GPCC's concept: patient narrative, partnership and documentation. The tool is generic, that is, it is not linked to a specific care context, patient or health care staff professional. It has been developed in collaboration with representatives of the National Patient Survey at The Swedish Association of Local Authorities and Regions (SALAR).

Translation of Living with Medicines Questionnaire  

A translation of the Living with Medicines Questionnaire tool (LMQ-3) into Swedish. This questionnaire measures the medicine burden in a person-centred way in people who take medicines regularly. It consists of 41 statements in eight domains: the patient's attitude to healthcare professionals, practical difficulties with medicine use, daily stress due to the effects of medicine use, side effects, general considerations, costs and self-determination in relation to medicine use.

Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ) [19]

A tool for evaluating person-centredness before and during recovery from colorectal cancer surgery to assess patients' knowledge-seeking and ability to assimilate knowledge that becomes useful. The longitudinal version consists of 23 questions in four domains: (1) Searching for and making use of information, (2) Understanding and involvement in care, (3) Making sense of recovery, and (4) Support and access to care. It is translated and adapted into Turkish and American English. Adjustments to further diagnoses and treatments are ongoing.

Adapted Person-centred Care Assessment Tool (Adapted P-CAT) [20]

Adaptation of the tool Person-centred Care Assessment Tool (P-CAT) is a tool that in the original version measures staff experience of person-centred care in elderly care. P-CAT was adapted within a GPCC project to be suitable for use in a hospital environment / clinic. The tool includes 13 statements that are rated on a 5-point scale from completely disagreeing to strongly agreeing.

Adapted Person-centred Practice Inventory – Staff (Adapted PCPI-S)

This tool has been translated into Swedish and shortened within a GPCC project. It examines staff experience of a person-centred practice. The tool is intended for use in change and care development purposes and is adapted to be included in a toolbox of instruments for measuring person-centred care. The abbreviated version of PCPI-S has 59 questions where the answer is estimated on a 5-point scale from strongly disagree to completely agree. PCPI-S has been validated against the previously validated tool P-CAT. A validated short version of PCPI-S is under development. The project to create a toolbox is also a collaboration with a similar project in Portugal and evaluation projects in Sweden.

Tool for reviewing person‐centred content in medical records [21,22]

A short protocol for reviewing the extent to which text in the patient records reflects person-centred care. The tool covers issues that focus on, among other things, storytelling and partnerships.

References

[1] Määttä S, Björkman I. We are not even allowed to call them patients anymore: conceptions about person-centred care. Health Expect. 2023; 27:e13887. doi:10.1111/hex.13887

[2]Boström, E., Ali, L., Fors, A., Ekman, I., & Erichsen Andersson, A. (2020). Registered nurses’ experiences of communication with patients when practising person–centred care over the phone: a qualitative interview study. BMC Nursing, 19(54). doi:10.1186/s12912-020-00448-4

[3] Cederberg, M., Fors, A., Ali, L., Goulding, A., & Mäkitalo, Å. (2022). The interactive work of narrative elicitation in person-centred care: Analysis of phone conversations between health care professionals and patients with common mental disorders. Health expectations, online ahead of print. doi:10.1111/hex.13440

[4] Fors, A., Blanck, E., Ekberg-Jansson, A., Fu, M., Lindström Kjellberg, I., Mäkitalo, Å., Swedberg, K., Taft, C., & Ekman I. (2018). Effects of a person-centred telephone-support in patients with chronic obstructive pulmonary disease and/or chronic heart failure - A randomized controlled trial. PLoS One, 13(8):e0203031. doi: 10.1371/journal.pone.0203031

[5] Friberg, F., Wallengren, C., Håkansson, C., Carlsson, E., Smith, F., Pettersson, M., Kenne Sarenmalm, E., Sawatsky, R., & Öhlén, J. (2018). Exploration of dynamics in a complex person-centred intervention process based on health professionals' perspectives. BMC Health Services Research, 18(441). doi: 10.1186/s12913-018-3218-3

[6] Smith, F. (2016) Patient Education Materials from a person-centred perspective - Coping and co-design in colorectal cancer care, Institute for Health and Care Sciences, Sahlgrenska Academy, University of Gothenburg. Doktorsavhandling.

[7] Goulding, A., Allerby, K., Ali, L., Gremyr, A., & Waern, M. (2018). Study protocol design and evaluation of a hospital-based multi-professional educational intervention: Person-Centred Psychosis Care (PCPC). BMC Psychiatry 18(269). doi: 10.1186/s12888-018-1852-2

[8] Allerby, K., Goulding, A., Ali, L., & Waern, M. (2020). Striving for a more person-centered psychosis care: results of a hospital-based multi-professional educational intervention. BMC Psychiatry, 20(523). doi: 10.1186/s12888-020-02871-y

[9] Juhlin, S., Bergenheim, A., Gjertsson, I., Larsson, A., & Mannerkorpi, K. (2021). Physical activity with person-centred guidance supported by a digital platform for persons with chronic widespread pain: A randomized controlled trial. Journal of Rehabilitation Medicine, 53(4):jrm00175. doi: 10.2340/16501977-2796.

[10] Feldthusen, C., Dean, E., Forsblad-d'Elia, H., & Mannerkorpi, K. (2016). Effects of Person-Centered Physical Therapy on Fatigue-Related Variables in Persons With Rheumatoid Arthritis: A Randomized Controlled Trial. Archives of Physical Medicine and Rehabilitation, 97(1), 26-36. doi: 10.1016/j.apmr.2015.09.022

[11] Nilsson, S., Wiljén, A., Bergquist, J., Chaplin, J., Johnson, E., Karlsson, K., Lindroth, T., Schwarz, A., Stenmarker, M., Thunberg, G., Esplana, L., Frid, E., Haglind, M., Höök, A., Wille, J., Öhlen, J. (2021). Evaluating pictorial support in person-centred care for children (PicPecc): a protocol for a crossover design study. BMJ Open, 11:e042726. doi:10.1136/ bmjopen-2020-042726

[12] Andersson, U., Bengtsson, U., Ranerup, A., Midlöv, P., & Kjellgren, K. (2021). Patients and Professionals as Partners in Hypertension Care: Qualitative Substudy of a Randomized Controlled Trial Using an Interactive Web-Based System Via Mobile Phone. Journal of medical Internet research, 23(6):e26143-e26143. doi: 10.2196/26143

[13] Ali, L., Wallström, S., Barenfeld, E., Fors, A., Fredholm, E., Gyllensten, H., Swedberg, K., & Ekman, I. (2020). Person-centred care by a combined digital platform and structured telephone support for people with chronic obstructive pulmonary disease and/or chronic heart failure: study protocol for the PROTECT randomised controlled trial. BMJ Open, 10(7):e036356. doi: 10.1136/bmjopen-2019-036356.

[14] Ali, L., Wallström, S., Fors, A., Barenfeld, E., Fredholm, E., Fu, M., Goudarzi, M., Gyllensten, H., Lindström Kjellberg, I., Swedberg, K., Vanfleteren, L.E.G.W., & Ekman, I. (2021). Effects of Person-Centered Care Using a Digital Platform and Structured Telephone Support for People With Chronic Obstructive Pulmonary Disease and Chronic Heart Failure: Randomized Controlled Trial. Journal of Medical Internet Research, 23(12):e26794. doi: 10.2196/26794.

[15] Cederberg, M., Ali, L., Ekman, I., Glise, K., Jonsdottir, I.H., Gyllensten, H., Swedberg, K., & Fors, A. (2020). Person-centred eHealth intervention for patients on sick leave due to common mental disorders: study protocol of a randomised controlled trial and process evaluation (PROMISE). BMJ Open, 10(9):e037515. doi: 10.1136/bmjopen-2020-037515.

[16] Cederberg, M., Alsén, S., Ali, L., Ekman, I., Glise, K., Jonsdottir, I.H., Gyllensten, H., Swedberg, K., & Fors, A. (2022). Effects of a Person-Centered eHealth Intervention for Patients on Sick Leave Due to Common Mental Disorders (PROMISE Study): Open Randomized Controlled Trial. JMIR Mental Health, 9(3):e30966. doi: 10.2196/30966.

[17] Nilsson, S., Hård af Segerstad, Y., & Olsson, M. (2022). Visualizing the Invisible - The Needs and Wishes of Childhood Cancer Survivors for Digitally Mediated Emotional Peer Support. Current Oncology. 29(2), 1269-1278. doi: 10.3390/curroncol29020108

[18] Fridberg, H., Wallin, L., Wallengren, C., Kottorp, A., Forsman, H., & Tisdag, M. (2020). Development and evaluation of the measurement properties of a generic questionnaire measuring patient perceptions of person-centred care. BMC Health Services Research, 20(1):960. doi: 10.1186/s12913- 020-05770-w.

[19] Sawatzky, R., Russel, L., Friberg, F., Carlsson, E.K., Pettersson, M., & Öhlén, J. (2017). Longitudinal person-centred measurement: A psychometric evaluation of the Preparedness for Colorectal Cancer Surgery Questionnaire (PCSQ). Patient Education and Counselling, 100(5), 827-835. doi: 10.1016/j.pec.2016.11.010.

[20] Van Diepen, C., Fors, A., Ekman, E., Bertilsson, M., & Hensing, G. (2021). Associations between person-centred care and job strain, stress of conscience, and intent to leave among hospital personnel. Journal of clinical nursing, 31(5-6), 612-622. doi: 10.1111/jocn.15919

[21] Jakobsson, S., Eliasson, B., Andersson, E., Johansson, G., Ringström, G., Simrén, M., & Jakobsson Ung, E. (2019). Person-centred inpatient care - a quasi-experimental study within an internal medicine context. Journal of Advanced Nursing, 75(8), 1678–1689. doi: 10.1111/jan.13953

[22] Heckemann, B., Chaaya, M., Jakobsson Ung, E., Olsson, D.S., & Jakobsson, S. (2020). Finding the Person in Electronic Health Records. A Mixed-methods Analysis of Person-centered Content and Language, Health Communication, 37(4), 418-424. doi: 10.1080/10410236.2020.1846275