Patient participation in electronic nursing documentation: An interview study among home‐care patients

Abstract Background Patients are increasingly expected to take an active role in their own care. Participation in nursing documentation can support patients to take this active role since it provides opportunities to express care needs and preferences. Yet, patient participation in electronic nursing documentation is not self‐evident. Objective To explore how home‐care patients perceive their participation in electronic nursing documentation. Methods Semi‐structured interviews were conducted with 21 home‐care patients. Interview transcripts were analysed in an iterative process based on the principles of reflexive inductive thematic analysis. Results We identified a typology with four patient types: ‘high need, high ability’, ‘high need, low ability’, ‘low need, high ability’ and ‘low need, low ability’. Several patients felt a need for participation because of their personal interest in health information. Others did not feel such a need since they trusted nurses to document the information that is important. Patients' ability to participate increased when they could read the documentation and when nurses helped them by talking about the documentation. Barriers to patients' ability to participate were having no electronic devices or lacking digital skills, a lack of support from nurses and the poor usability of electronic patient portals. Conclusion Patient participation in electronic nursing documentation varies between patients since home‐care patients differ in their need and ability to participate. Nurses should tailor their encouragement of patient participation to individual patients' needs and abilities. Furthermore, they should be aware of their own role and help patients to participate in the documentation. Patient or Public Contribution Home‐care patients were involved in the interviews.


| INTRODUCTION
In today's healthcare system, value is attached to patient participation. We define patient participation, in line with the definition of Castro et al., 1 as: 'the individual's engagement in the decision making about his care through a dialogue attuned to his preferences, potential and a combination of his experiential and the professional's expert knowledge'. Given the current attention in healthcare for patient participation, patients are expected to take an active role in their own care. When taking such an active role, this will enhance shared decision-making of patients and professionals involved about the care, and about how the needs and preferences of the patient have to be met. 2,3 A growing body of evidence demonstrates that both patient participation and shared decision-making can contribute to improved quality of life, better health outcomes and greater patient satisfaction. [4][5][6][7] Patient participation and shared decision-making are easier to achieve when patients also participate in the care-related documentation in their individual electronic health record. [8][9][10] With patient participation in nursing documentation we mean in this paper that a patient is consulted by nurses during the documentation process, is involved in making the individual care plan, is involved in the actual documentation in the electronic health record, and/or reviews, corrects and supplements the information documented. Patients will be better able to express their preferences about nursing care when nurses ask them which information they believe is important to document, 11 leading to care plans tailored to the needs of patients. 12 Particularly when electronic health records are linked with electronic patient portals, this provides opportunities for patients to have control over their care and related decision-making. [13][14][15][16][17] Electronic patient portals are applications maintained by healthcare organizations that allow patients independent access to their individual health record. 16 Yet patient participation in electronic nursing documentation is not self-evident. In a qualitative interview study, Dutch community nurses mentioned various barriers for patient participation in documentation, such as poor internet connections, technical failures in the electronic health records and time pressure. 18 These barriers made that nurses not always documented in the presence of patients and thereby limited patients to participate in the documentation. 18 In addition, a focus group with four Dutch patients and four family caregivers indicated that patients often felt not involved in nursing documentation, for example, because documentation often occurred out of their sight, and they often could not access their individual health record. 19 However, this focus group only involved patients who all were interested in nursing documentation, and more in-depth insight was needed into patients' experiences and perspectives regarding participation in electronic nursing documentation. We chose to focus on the home-care setting, given that in the Dutch context this setting is in a leading position in this regard: In 2019 81% of nurses in home care used electronic patient portals, compared to 42% of nurses working in general practitioner practices and 67% of the hospital nurses. 17

| Sampling and setting
This study was conducted in the home-care setting in the Netherlands. In this country, home care is provided by registered nurses and certified nursing assistants and involves personal physical care, technical care, preventive care and psychosocial care. 23 We used purposive sampling to recruit patients who met the following inclusion criteria: (1) receiving home care from a care organization that uses electronic health records; (2) Dutch-speaking and (3) having no severe cognitive impairments.
The participants were recruited with the assistance of community nurses from the professional networks of two of the authors (K. D. G. and J. D.) who both combined their position as researchers with their employment as community nurses. No patients with which these authors had a nurse-patient relationship were interviewed by these authors.
The authors instructed nurses to search for patients meeting the inclusion criteria, but also with some variation in age, gender, educational level, cultural background, living alone or with a spouse and the type of home care used. This variation was pursued because we assumed that these background characteristics were associated with the perspectives and experiences regarding patient participation in nursing documentation.
The community nurses provided the patients with an information letter and passed on the phone numbers of the patients who were willing to take part in the study. Recruitment stopped when analyses of the last two interviews showed that data saturation had been reached.  (Table 1). We refined questions of the interview guide during the cyclic process of data collection and analysis, to ensure that we were given in-depth information needed to answer the research questions.

| Data collection
Initially, we aimed to conduct all interviews face-to-face at patients' homes or another place convenient for patients. We were able to do this for the first 13 interviews. However, because of the COVID-19 pandemic, the last eight interviews were conducted over the phone. All interviews were audio-recorded. In three interviews, the patient's spouse attended the interview and, although the interview was focused on the patient, the spouse sometimes gave a reaction as well. In the analysis, we only included the patient's remarks and not those of the spouse because the interview was focused on the patient.

| Data analysis
The recordings of the interviews were transcribed verbatim. The interview transcripts were analysed in an iterative cyclic process of 'data collection-data analysis-additional data collection'. This process implied that shortly after conducting 2-4 interviews, the transcripts were analysed and findings from this interim analysis steered questions for the following interviews. The cyclic process of data collection and data analysis continued until data saturation was reached, which was indicated by the fact that the analysis of the last two interviews produced no new aspects relevant for answering the research questions. The interviews were analysed following the steps of thematic analysis: becoming familiar with the data, generating initial codes, searching for themes, reviewing themes, defining and naming themes and reporting. 21,22 The programme MAXQDA 2020 supported the analysis process. 26 To enhance the trustworthiness of the study, researcher triangulation was applied: one author (J. D.) analysed all 21 interview transcripts while 14 of the 21 transcripts were also analysed by at least one or more of the other authors (K. D. G., W. P. or A. F.). 27 The whole team of authors discussed the interim and final analyses to further increase the trustworthiness and to make sure that the final themes presented in this paper clearly reflected the interview data. 27 In the inductive analysis and related discussions, we identified four types of patients, distinguished by whether or not patients expressed a need to participate and whether or not patients expressed they were able to participate in nursing documentation.
Analysing data by identifying types is a practically applicable and proven method, for example, in research on patient involvement and engagement. 28,29 We further enhanced the trustworthiness of the study by 'peer debriefing'. 27 This implied that we discussed a draft of this paper, also including the results sections, in an academic meeting with a group of peer researchers who were not involved in the study. Based on this peer debriefing, some small adjustments were made in the draft paper, in particular to write down the findings even more clearly.
Furthermore, we have provided descriptions of the setting and patient characteristics to help others judge the transferability of the results to other situations. In addition, the study is reported according to the 'Standards for reporting qualitative research' to boost the dependability of the study. 30

| Ethical considerations
The study protocol was approved by the Medical Research Ethics

| Patient characteristics
In total, 21 patients took part in the study, of whom 15 were female ( (e.g., care for a tracheostomy tube) or a combination (e.g., help with washing and infusion therapy).

| Typology with four patient types
The analysis process resulted in the identification of a typology with  In some of these cases, patients mentioned that a spouse or another family caregiver stepped in. Yet others described not wanting to burden their family caregiver by asking them to participate in the documentation.

| Ways to participate
We also asked patients about the ways in which they might ideally participate in electronic nursing documentation. Virtually all participants in the two types with a need for participation indicated that needs. This finding is in line with previous research on patient participation and shared decision-making, [4][5][6][7] as well as with current legislation and professional guidelines that support patient participation, for example, by stating that patients must have access to the documentation about their health and care. 24,25,[31][32][33] However, other patients (of the types 'low need, high ability' and 'low need, low ability') said they felt no need for participation. Some of these patients explained this lack of interest by stating that the nursing care they received was not complex and therefore the nursing documentation was not significant for them. Yet, other patients who did not feel a need to participate, explained that they considered participation to be a burden. These patients should not be pressured to participate in documentation, given that would be contrasting with the principle of need-driven care, as was also indicated in previous research. [34][35][36][37] Nevertheless, in a qualitative interview study nurses indicated they still could involve patients to some extent, via verbal communication about the nursing care. 18 At the same time, patients in the type 'high need, low ability' indicated that although they felt a need for participation, they did not always feel able to participate, for instance, because they could not read the electronic nursing documentation. There seem to be opportunities to enhance patient participation in nursing documentation for patients of this type, as these patients pointed to the importance of nurses helping them to reflect on nurses' documentation. If nurses failed to meet these needs, patients felt less able to participate. The importance of support from care professionals in achieving patient participation in nurses' or physicians' documentation was also indicated in other studies. 10,38 Furthermore, the poor usability of electronic patient portals was mentioned as a barrier for participation in nursing documentation by patients who used these portals. This seems in accordance with findings from previous studies. 39,40 Some participants in our study were not able at all to access electronic patient portals since they had no electronic devices or lacked the digital skills to use such devices.
These patients were virtually all of advanced age, which is consistent with previous studies pointing to the limited use and usability of electronic patient portals for elderly persons. 41,42 In addition, previous studies indicated that low health literacy is associated with limited abilities to get access to information in electronic health records, for example, through patient portals. 43,44 Health literacy concerns the individual's cognitive and social skills that determine the ability to gain access, understand and use the information to promote one's own health. 45  This will ultimately lead to appropriate care that best suits patients' needs and which may be also efficient and time-saving.
Lastly, a comment regarding the fact that we only had Dutchspeaking patients in the sample. It is likely that the ability to participate in documentation will be limited if the patient cannot read the language used in the health records. In those cases, a patient will often be dependent on the translation by a family caregiver who does speak the language. This means that a community nurse will have to pay extra attention to communication about the documentation through the translating relative.

AUTHOR CONTRIBUTIONS
Kim De Groot: Conceptualization, methodology, formal analysis, investigation, writing-original draft, writing-review and editing.

ACKNOWLEDGEMENTS
The authors would like to thank all the patients who kindly participated in this study. Besides, the authors thank the nursing students Rianne Froma, Ingeborg Leemburg, Frits Mouthaan and Liesbeth Zijlstra for performing some of the interviews, and are grateful to the community nurses who helped with recruiting patients. Furthermore, the authors thank Clare Wilkinson for the language editing. This study did not receive any specific grants from funding agencies in the public, commercial or not-for-profit sectors.

CONFLICTS OF INTEREST
The authors declare no conflicts of interest.

DATA AVAILABILITY STATEMENT
The anonymous transcripts that support the findings of this study are available from the corresponding author upon reasonable request that does not contravene the informed consent forms signed by the participants.