Exploring documentation in a person-centred care pathway for persons with chronic health conditions
Short description
In clinical care practice, the focus is often on identifying and treating a patient's health problems. This approach is also reflected in the patient documentation, and research shows that healthcare professionals find it challenging to document person-centred care. In this study, we investigated
1. the language and content of patient health records,
2. the patients' needs and use of documentation,
3. patient health records before and after the implementation of person-centred care.
The study was part of the Gothenburg Pituitary Gland Tumor Study (GoPT study), which evaluated the implementation of a person-centred care pathway.
Short Description of main results
- Personal documentation is a valuable and flexible resource for managing life after pituitary adenoma surgery. Patients use analogue and digital media as an expression of autonomy, to manage life and make sense of chronic illness, and to share information with healthcare professionals, family and friends.
- Patient perspectives were mostly absent from our sample of medical records. Established norms act as a barrier that prevents the admission of new members (patients) to the established discourse community. Our findings suggest that it is not currently feasible to provide recommendations about improving person-centred documentation, because there is little or no information on patients’ needs and wishes for co-creating shared health records.
Publications
Jakobsson, S, Ringström, G, Andersson, E, et al. Patient safety before and after implementing person‐centred inpatient care — A quasi‐experimental study. J Clin Nurs. 2019; 29: 602– 612. https://doi.org/10.1111/jocn.15120
Jakobsson, S, Eliasson, B, Andersson, E, et al. Person‐centred inpatient care – A quasi‐experimental study in an internal medicine context. J Adv Nurs. 2019; 75: 1678– 1689. https://doi.org/10.1111/jan.13953
Jakobsson Ung E, Olofsson A-C, Björkman I, Hallén T, Olsson D, Ragnarsson O, Skoglund T, Jakobsson S, Johannsson G. (2019). The pre- and postoperative illness trajectory in patients with pituitary tumours. Endocrine connections. 8. 10.1530/EC-19-0202.
Jakobsson, Sofie & Olsson, Daniel & Andersson, Eva & Hallén, Tobias & Krabbe, David & Olofsson, Ann-Charlotte & Ragnarsson, Oskar & Skoglund, Thomas & Johannsson, Gudmundur & Jakobsson Ung, Eva. (2020). Extended support within a person-centred practice after surgery: protocol for a quasi- experimental study for patients with pituitary tumours (Preprint). 10.2196/preprints.17697.
Heckemann, B., Graf, T., Ung, E. J., Jakobsson, S., Ragnarsson, O., Olsson, D. S., & Blomdahl, C. (2023). The importance of personal documentation for patients living with long-term illness symptoms after pituitary surgery: A Constructivist Grounded Theory study. Health Expectations: an international Journal of public participation in health care and health policy, 26(1), 226–236. https://doi-org.ezproxy.ub.gu.se/10.1111/hex.13648
Heckemann, B., Chaaya, M., Jakobsson Ung, E., Olsson, D. S., & Jakobsson, S. (2022). Finding the Person in Electronic Health Records. A Mixed-Methods Analysis of Person-Centered Content and Language. Health Communication, 37(4), 418–424. https://doi.org/10.1080/10410236.2020.1846275
Researchers
Project Lead
Birgit Heckemann, Reg. Nurse, Ph.D., Institute of Health and Care Sciences and Gothenburg Centre for Person-centred Care, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden
Study group
Ann-Charlotte Olofsson, Reg. Nurse, BSc. Sahlgrenska University Hospital, Center for Endocrine Metabolism, Gothenburg, Sweden
Christina Blomdahl, Reg. Occupational Therapist, Ph.D. Södra Älvsborgs Hospital, Adult Psychiatric Clinic, Borås, Sweden
Daniel S. Olsson, Medical Doctor, Associate Professor. Sahlgrenska University Hospital, Department of Endocrinology, Gothenburg, Sweden and Department of Internal Medicine and Clinical Nutrition, Institute of Medicine, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Previous researcher: Eva Jakobsson Ung, Principal Investigator GoPT Health and Care Sciences Research, Reg. Nurse, Professor. Institute of Health and Care Sciences, Sahlgrenska Academy, Gothenburg University, Gothenburg, Sweden and Sahlgrenska University Hospital, Specialist Medicine, Gothenburg, Sweden
Sofie Jakobsson, Reg. Nurse, PhD, Institute of Health and Care Sciences and Gothenburg Centre for Person-centred Care, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Further member of the GoPT project group
David Krabbe, Registered Psychologist, Ph.D. candidate. Sahlgrenska University Hospital, Department of Rehabilitation Medicine, Gothenburg, Sweden and Institute of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Eva Andersson, Registered Nurse. Sahlgrenska University Hospital, Specialist Medicine, Gothenburg, Sweden
Gudmundur Johannsson, Principal Investigator GoPT Endocrinology, Med. Dr., Chief Physician, Professo,. Sahlgrenska University Hospital, Department of Endocrinology, Gothenburg, Sweden and Institute of Medicine, Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Oskar Ragnarsson, Med. Dr., Associate Professor. Sahlgrenska University Hospital, Department of Endocrinology, Gothenburg, Sweden and Institute of Medicine, Department of Internal Medicine and Clinical Nutrition, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Tobias Hallén, Med. Dr., Ph.D. candidate. Sahlgrenska University Hospital, Department of Neurosurgery, Gothenburg, Sweden and Institute of Clinical Neuroscience, Department of Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden
Thomas Skoglund, Principal Investigator GoPT Neurosurgery, Med. Dr., Associate Professor. Sahlgrenska University Hospital, Department of Neurosurgery, Gothenburg, Sweden and Institute of Clinical Neuroscience and Physiology, Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden