Patients’ perceptions of barriers for participation in nursing care
Abstract
Scand J Caring Sci; 2011; 25; 575–582 Patients’ perceptions of barriers for participation in nursing care
Background: In many Western countries as in Sweden, patients have legal right to participate in own care individually adjusted to each patient’s wishes and abilities. There are still few empirical studies of patients’ perceptions of barriers for participation. Accordingly, there is a need to identify what may prevent patients from playing an active role in own nursing care. Such knowledge is highly valuable for the nursing profession when it comes to implementation of individual patient participation.
Aim and objective: To explore barriers for patient participation in nursing care with a special focus on adult patients with experience of inpatient physical care.
Methodological design and justification: Data were collected through 6 focus groups with 26 Swedish informants recruited from physical inpatient care as well as discharged patients from such a setting. A content analysis with qualitative approach of the tape-recorded interview material was made.
Ethical issues and approval: The ethics of scientific work was adhered to. Each study participant gave informed consent after verbal and written information. The Ethics Committee of Göteborg University approved the study.
Results: The barriers for patient participation were identified as four categories: Facing own inability, meeting lack of empathy, meeting a paternalistic attitude and sensing structural barriers, and their 10 underlying subcategories.
Conclusions: Our study contributes knowledge and understanding of patients’ experiences of barriers for participation. The findings point to remaining structures and nurse attitudes that are of disadvantage for patients’ participation. The findings may increase the understanding of patient participation and may serve as an incentive in practice and nursing education to meet and eliminate these barriers, in quality assurance of care, work organization and further research.
Introduction
Patient participation in health care has become increasingly important in the past few decades. In many Western countries, as in Sweden, patients have a legal right to participate in their own care, individually adjusted to their wishes and abilities. Studies have established that patients consider participation to be obvious and important (1–3), but there are also findings showing the opposite (4, 5). Some patients seem to prefer a passive recipient role (6, 7).
The word participation has been discussed in differing contexts. Collective participation practised as lay participation in the formulation of policy, the commissioning of services and in research (8), or indirect participation as a third party parent, close relative or carer (9). Individual participation refers to active patient involvement in all aspects of own care. However, in each nursing care situation, the degree to which patient participation in own care takes place depends on the nurse (10). Barriers for participation in nursing care are an important question for the nursing profession and patients’ perceptions was the focus of this study.
Studies of patient participation in nursing care have not been congruent regarding definition, elements and processes (11). Attempts have been made to clarify the meaning of patient participation from the point of view of nurses as well as patients (3, 10, 12–14). These researchers place participation as a dynamic interaction process that changes over time in the context of the nurse–patient relationship. There are few empirical studies that have explicitly explored barriers for patient participation in nursing. Timonen and Sihvonen (15) found that patients emphasized tiredness, difficulties in formulating questions, lack of encouragement and difficulties with the language used. Sahlsten et al. (16) presented hindrances from a nurse perspective: (i) competence including lack of insight and knowledge, (ii) influence of significant others in the form of a paternalistic attitude, and (iii) organization and work environment including lack of nurse–patient continuity and co-worker support, shortcomings during rounds and care planning, shortcomings in the physical environment.
Hickey and Kipping (17) found, based on a literature review, that professionals’ attitudes towards patient participation are probably the main hindrance. Staff may feel undermined, perceiving that their professional judgement and competence are questioned, and may have difficulties in coming to terms with the implicit criticism they receive as a result of patient participation. Henderson (18) stated there exists an imbalance between nurse and patient and identified the following factors among nurses: (i) a view that patients lack the necessary medical knowledge, (ii) a belief that they ‘know best’ and (iii) a need to maintain power and control. Sainio et al. (19) found hindrances among patients; poor health, ignorance, anxiety, age and time pressure and lack of time in the case of nurses, high staff turnover and poor interactive relationships. Hindrances leading to nonparticipation have also been discerned; when professionals were not attuned to patients’ concerns and individual needs, as well as when they were literally silenced or their wishes were ignored (20), when the patient lacked an equal relationship and did not feel respected, did not receive information and felt controlled (12).
There are still few empirical studies of patients’ perceptions of barriers for participation. Accordingly, there is a need to identify what may prevent patients from playing an active role in their own nursing care. Such knowledge is highly valuable for the nursing profession when it comes to implementation of individual patient participation.
The study
Aim
The aim was to explore barriers for patient participation in nursing care with a special focus on adult patients with experience of inpatient physical care.
Design
This study is part of a larger project on patient participation in nursing care from the perspective of both the patient and the nurse. A content analysis with qualitative approach was performed (21). This method was chosen since it retains closeness to data from the focus groups and enables categories, which represent the informants’ thoughts and emotions in a systematic way, to be generated.
Participants
The sample consisted of six focus groups and the selection was purposeful. The informants consisted of 26 Swedish patients recruited from inpatient physical care as well as discharged patients from such a setting. The intention was to have a range of informants able to contribute with their experience as patients. The focus groups consisted of: (i) patients from a gynaecological ward and a rehabilitation ward where patient participation was part of an explicit care philosophy (focus groups 1 and 2); (ii) members of The Pensioners National Organization (PNO) discharged from hospital and living at home (focus groups 3 and 4); (iii) patients from a heart failure ward focusing on nurse–patient continuity in the form of primary nursing (focus group 5); and (iv) patients from a neurological ward with neither an explicit care philosophy emphasizing patient participation nor a focus on nurse–patient continuity (focus group 6) (Table 1). Each focus group met once. Eighteen men and eight women participated. The age range was 32–87 years. All informants had been inpatients in physical care for at least 4 days. The time spent in hospital varied from 4 days to 7 months.
| Focus groups | Patients from different contexts | Number of patients in each focus group |
|---|---|---|
| Focus group 1 | Gynaecological ward | 4 |
| Focus group 2 | Rehabilitation ward | 5 |
| Focus group 3 | Members of PNO | 5 |
| Focus group 4 | Members of PNO | 5 |
| Focus group 5 | Heart failure ward | 3 |
| Focus group 6 | Neurological ward | 4 |
Data collection
Collection of data was made through focus groups in order to get access to a range of experience-based data. The intention was to uncover the informants’ perspectives in depth. The dynamics generated in groups were used to obtain rich and detailed perspectives (22–24). The data were collected over a period of 5 months. The informants in focus groups 1, 2, 5 and 6 were recruited from four hospitals in West Sweden. Written consent was obtained from the head of the clinic. The head nurse of each ward was contacted by telephone and given information. All registered nurses on the selected wards were sent written information about the aim and procedure. The nurses were asked to approach patients the day before a focus group was scheduled to meet and ask whether they were interested in participating in the study or not. Verbal and written information was given to the patients who were willing to participate. On the morning of a planned focus group, verbal informed consent was obtained. When four or more informants agreed to participate, a focus group interview was carried out. Two patients chose to not participate because of an unexpected visit (1) and feebleness (1). The focus group interviews were held adjacent to the wards in a place where there would be no interruption and 16 informants participated.
The informants in focus groups 3 and 4 were recruited from PNO in a small city. Verbal and written information about the aim and procedure was given to the PNO representative, who was asked to recruit senior citizens with previous inpatient episodes in physical care. The PNO representative received the written information to hand out to the seniors and collected their informed consent, which the interviewer then followed up with a telephone call. These focus groups were held in the association’s assembly hall with ten informants participating.
The focus groups concentrated on the question: ‘Which barriers for participating in your own nursing care, have you experienced’. Nursing care was explained as the interplay with Registered Nurses. As recommended by Carey (25), the emerging content of barriers for participation was refined and augmented as it was analysed and understanding increased. In each focus group, the discussion was verbally summarized and the informants commented on what was most important and significant. They reflected on, supplemented, verified and further developed the content. Validation of the content in this form has been recommended by researchers (23, 25). An open and free discussion may be hindered by holding interviews during a hospital stay and possibly influencing credibility negatively due to a situation of dependency. Accordingly, two of the focus groups were held after discharge.
Each focus group lasted 1–1.5 hours and was lead by the same nurse-researcher. A co-assessor (M.S.) observed, took notes, managed a tape-recorder and contributed with questions. Each focus group was tape-recorded in its entirety and transcribed verbatim.
Ethical issues and approval
The ethics of scientific work was adhered to. Each study participant gave informed consent after verbal and written information. The patients were informed that participation could be halted at any time and that all data would be treated in such a way that no unauthorized person could have access to the material. The Ethics Committee of Göteborg University approved the study (no. Ö 653-01).
Data analysis
The data were analysed using a content analysis described by Burnard (21). After each focus group, the audiotape was listened to and a written summary was made. A preliminary analysis of emerging categories along with ideas, questions and memos were noted. This was used to gather additional data from subsequent focus groups.
After all the focus group interviews had been completed, a final analysis of all the data material transcribed verbatim was carried out. Each transcription was read and examined repeatedly by both interviewer and co-assessor for their interpretation of the informants’ experiences and thoughts. By means of open coding, categories reflecting events and actions were then freely generated. These categories were reduced by means of ranking under higher order headings. In this way, the interviewer and co-assessor independently developed category systems based on direct quotations. The category systems were then compared and a few adjustments were made to reach a consensus. The transcripts were then re-read along with the final categories to establish the degree to which the categories covered all aspects of the focus group interviews. Each coded section of the focus group interviews was then examined for context congruence. In addition, one researcher (K.P.) not earlier involved in the analysis, examined the final category system, including direct quotations. No changes were made.
Findings
The findings describe what in a patient’s care situation can prohibit patient participation in nursing care. The findings are based on patients’ experiences and were summarized in a category system. Four categories were found: Facing own inability, meeting lack of empathy, meeting a paternalistic attitude and sensing structural barriers, each including underlying subcategories (Table 2).
| Categories | Subcategories |
|---|---|
| Facing own inability | Overwhelmed by the illness |
| Not knowing enough | |
| Low self-esteem | |
| Meeting lack of empathy | Met without interest |
| Met without a sensitive ear | |
| Meeting a paternalistic attitude | Met by domination |
| Met by secretiveness | |
| Sensing structural barriers | New faces all the time |
| Insufficient documentation | |
| No bed available for me |
Facing own inability
This category illustrates barriers that identify when patients are not in control of their situation they may not desire participation. This category is based on three subcategories: overwhelmed by the illness, not knowing enough and low self-esteem.
Overwhelmed by the illness. Being overwhelmed by the illness is when a patient’s health status limits or precludes the ability to participate. ‘I was so poorly that I let them do whatever they wanted. I let go of everything and didn’t want to participate’. Informants described that the largest hindrance to participation is to be sedated or unconscious and ‘then I can not have a say in what the staff does or wants to do’. They emphasized that when a patient ‘does not have the energy and does not want to enough, this should not result in reprisals in the form of poor care’.
Not knowing enough. Not knowing enough is when a patient is not sufficiently knowledgeable about health status and situation, which make it difficult to understand, cooperate and make decisions. According to informants, the reason for this could be that a nurse gives insufficient information or information in an unsuitable form or lacks insight into a patient’s needs. ‘You can not participate in what you do not know. I did not know what had happened, what I had got; I could not say anything and I did not know what they were going to do with me’. They emphasized nurses’ responsibility to tell them, for example, why a normal bodily function no longer functioned and what the consequences of this could be.
Low self-esteem. Low self-esteem is when patients judge their own ability to be insufficient to be able to understand and cope with the problem and tackle challenges. Patients could be afraid and shut themselves off from what is happening. According to informants, without sufficient support, it might be simplest to trust the nurse and choose not to participate. ‘I haven’t been able to cope with it as I should have done; I have got some sort of block that I can’t cope with this. I trust that they fix this for me if I do as told, but then I can not change anything. Then, I can hand over responsibility and let someone else make the decisions’.
Meeting lack of empathy
This category illustrates barriers in patient encounters when a nurse is unable to make emotional connection. A nurse who does not show sympathy, i.e. is insensitive, does not care or is inconsiderate can prevent patient participation. Patients feel that they are not seen and confirmed and consequently does not have the motivation or will to participate. The category is based on two subcategories: Met without interest and met without a sensitive ear.
Met without interest. Being met without interest is when a nurse does not display a willingness to familiarize oneself with the patients’ situation and find out how they feels. This includes that a nurse does not display openness towards others. According to informants, this occurs when nurses distance themselves. A patient does not give more than nurses’ give of themselves, which could hinder cooperation. ‘How can she make me feel valuable when she turns her back on me and snaps at me’.
Met without a sensitive ear. Being met without a sensitive ear occurs when a nurse does not pay attention and listen to the patient, which could cause misunderstanding because they talk past each other. A nurse might be ‘doing her own thing’ and have own goals or ‘just look at the illness and not include the rest of the person’. Patients need to feel that they are getting an emotional response from the nurse. ‘I have to know that what I am trying to say has fallen on fertile ground, otherwise the trust needed for participation is not created’. Informants also described misunderstanding as result of nurses having difficulty in speaking Swedish or using Latin terms.
Meeting a paternalistic attitude
This category illustrates barriers when a patient meets a nurse having an attitude characterized by power and control. Nurses may feel that they know what is best for the patient and not pay attention to opinions and wishes, which could hinder patient participation. The category is based on two subcategories: Met by domination and met by secretiveness.
Met by domination. Being met by domination is when a nurse exerts control over the nursing care in a way that is not in accordance with the patient’s view. Informants described how nurses could mark out their position, which created worry and uncertainty. ‘If you dare argue, if I say something stupid today, will it get me into trouble tomorrow. You feel powerless when the nurse assumes a supercilious and self-absorbed role. I do not participate, she takes over completely’.
Met by secretiveness. Being met by secretiveness is when a nurse takes a close relative to one side to talk about something involving the care of the patient because they feel that it is best for the patient not to know. Informants emphasized that they felt excluded and uncomfortable when ‘a nurse was talking to my wife behind my back and kept me in the dark about what was going to be done’.
Sensing structural barriers
This category illustrates barriers patients perceive in the design of the care which undermine their opportunities to exert control and influence. It illustrates problems that arise when nursing care is not sufficiently individualized, which could prohibit patient participation. The category is based on three subcategories: New faces all the time, insufficient documentation and no bed available for me.
New faces all the time. Meeting new faces all the time occurs when the patient lack a relationship with an own nurse, which is needed for participation. Informants emphasized how difficult they felt it was not being able to talk sufficiently often with an own nurse. ‘I didn’t have my own nurse to turn to, somebody on my side. There was a time when I had far too many nurses. How do you explain then so that it doesn’t turn out wrong?’. Informants described that when a patient has given ‘responsibility for something to one nurse, it’s unpleasant when somebody else stick her nose into things’.
Insufficient documentation. Insufficient documentation is when a patient feels that the nursing care plan is deficient and information channels do not function, which prohibit patient participation. This results in unsatisfactory cooperation between the patient, the nurse and other staff members. ‘When nurses take over after a shift, are not they supposed to go through the patients? When staff is not informed and not familiar with the care plan or if it is not complete, everybody does things in their own way’.
No bed available for me. No bed available for me is when wishes concerning where the patient should be cared for are not met. Informants described several occasions when they experienced ‘quite the reverse of participation as I was placed, moved or sent home against my will because of a shortage of beds in the ward’. This, in turn, could result in patients feeling completely disregarded and deserted to new staff members with the result that they felt apprehensive and insecure. ‘I felt extremely vulnerable and that unsettled me. I had no alternative I just had to leave [the ward]. That’s not participating’.
Discussion
This study provided an exploration of barriers for patient participation in nursing care based on patients’ experiences. The findings are based on these informants (n = 26) and their ability to describe and discuss experiences of patient participation in physical care. All informants were heterogeneous with regard to diagnosis and experiences, had varying cultural backgrounds and were from various wards and hospitals. They were both inpatients and discharged patients from such a setting, which taken as a whole can be seen as a strength. Although a majority of these informants were able to name his/her Registered Nurse in this context, it is not certain that they in fact were able to distinguish ‘nursing’ from experiences with other care providers.
Data were collected in focus groups ranging from three to five informants. This may be considered small although several researchers recommend four to six informants per focus group (25, 26). This size was chosen as the starting point as small groups are easier to recruit and host as well as being more comfortable for the participants (23). What was essential for the aim of the study was the content of the focus group discussions, which generated sufficient data. In each group, the interaction between informants was friendly, generous and relaxed. This is of great importance as good interaction is significant for the trustworthiness of data material collected through the method used here and its interpretation (27). All the informants contributed their opinions and discussed and developed viewpoints, which gave rich and in-depth qualitative data.
For legal and practical reasons, the selection of participants had to be carried out by nurses at the selected wards. The preponderance of males may have been a result of this, but does not in itself have an effect on the analysis strategy. Differences between groups with respect to discussions or gender were not of interest here but can be explored in a future study.
Measures were taken to enhance credibility of categories and subcategories (Table 2). Two persons independently coded the data in addition to which one external person not previously involved reviewed and commented on the final category system including quotations. Further studies need to be carried out in similar settings to either provide support for or reject the categories presented. Only inpatient physical care has been highlighted and, obviously, other patients and settings need to be explored.
The categories ‘Facing own inability’, ‘Meeting lack of empathy’, ‘Meeting a paternalistic attitude’, and ‘Sensing structural barriers’ all point to remaining structures and nurse attitudes that are of disadvantage for patients’ participation. To face this context and perhaps assert an own opinion may demand energy and courage. The findings indicate that patients do not yet experience themselves as valuable partners in nursing care, which is an important aspect of patient participation. Structures still seem to originate from the bio-medical model and seldom focus on holism and person-centred care.
‘Facing own inability’ captures an important facet of the way in which people respond as patients in a hospital context. They have to cope with the illness and the role of an ill person and an unfamiliar hospital environment. Most patients probably feel vulnerable and not in control which means that they may become dependent and passive. Despite the fact that WHO has declared that patients have ‘a duty to participate in planning and implementation’ of their care (28:1), our findings clarify that patients sometimes do not have this ability due to health status, knowledge or self-esteem. It is evident that a patient can not be forced to participate. Due to the positive effects of patient participation, it is crucial that nurses strive to provide support and opportunity for patients to participate in their own care to the fullest possible extent they are capable. Patients’ active participation in their own care contributes to increased motivation to improve their own condition, adherence to prescriptions, better treatment results and greater satisfaction with received care (29). Participation also decreases patients’ fear, insecurity and anxiety (30). Our findings point to the necessity of individualizing each patient’s nursing care, so that the patient can continuously choose to be active or passive as a part of the right to self-determination. When patients face their own inability, they may hand over responsibility and become passive. Accordingly, they need the support of a nurse to reflect over cause and consequences. This presupposes that nurses take as their starting point patients’ experience and find, use and strengthen their unique resources in relation to actual needs by means of an intentional dialogue (10, 31). In every encounter, patients need emotional response and are confirmed by the way nurses listens, shows acceptance and understanding for thoughts and emotions. Information has to be provided in a way that is in line with patients’ own values and needs. Understanding the health problem is something that both patient and nurse ought to act upon. This includes clarifying and asking more in-depth questions to induce patients to be self-reflective regarding thoughts and feelings, as pointed to by Edwards (32) as well as Fiveash and Nay (33). To reflect as patient is needed in order to interpret and structure experiences and reconstruct them into learning (34). Patients need some of nurse’s specialized knowledge, thus increasing their competence and freedom to exercise control. Shared information and knowledge is a prerequisite for patient participation (35).
As a patient, you also need support in order to overcome feelings of low self-esteem and strengthen a positive impression of yourself as a participant which is in line with Kettunen et al. (36). With feedback from the nurse, the patient may be encouraged as a successful partner, also emphasized by Hughes (37) and Tutton (13), which strengthens ability and self-efficacy according to Bandura (38). Positive experiences and discussing possibilities may build up patients’ self-esteem and give them confidence to control their situation.
The barriers ‘Meeting lack of empathy’ and ‘Meeting a paternalistic attitude’ point to the patient’s subordinate and vulnerable position. If a nurse retains the traditional role as expert and being in control, a paternalistic form of helping, it may be difficult to accept patients’ own opinions. A nurse may consider participation too time-consuming and therefore choose to keep a distance. Perhaps the nurse does not understand that patient participation requires a deliberate approach and manner, according to Sahlsten et al. (16). This reflects an attitude of the patient as being helpless (39) and may result in a passive acceptance of the patient role. Mistrust may be developed which is not compatible with participation. Our findings call attention to the power imbalance and a need to minimize nurses’ power over patients, also pointed to by Hickey and Kipping (17) as well as Henderson (18). This presupposes that nurses reflect on what impact their own approach and behaviour has when meeting a patient. In their interplay, a patient’s actions influence a nurse’s reactions and vice versa (10). The underlying meaning can be shared and validated by the parties in order to minimize the risk of misunderstanding. An emotionally safe environment, where patients can freely express their own individuality and exercise a desirable degree of control, is a prerequisite of patient participation also reported by Larsson et al. (3). Otherwise, the result may be unmet needs due to patients hesitating to express their own experiences and opinions. It is only when power is shared via good communication and mutual goals that trust are developed and patient participation can be achieved.
‘Sensing structural barriers’ point to inadequate planning and organization. Some of these findings seems not as clearly described in earlier studies of patient participation from patients’ point of view. Further investigations are needed as these barriers impact heavily on patients’ opportunities to participate in their own nursing care. In Sweden, as in several other western countries, health care has undergone considerable rationalization due to economic restrictions. Reorganizations have been driven from a staff perspective instead of focusing on patients as a starting point for care. Consequently, nursing care individually adjusted to each patient has been pushed into the background by standardized routines and the patient could thus become an object in the process.
The way nursing care is organized needs to focus more on continuity, time for interaction and intentional daily talks in order for the patient and the nurse to get to know each other, also reported by Sahlsten et al. (16, 31) and Larsson et al. (3). Only then can nurses provide nursing care that fulfils the specific needs of a patient. When a patient has frequent contacts with several different nurses, this may result in contradictory replies and instructions, so the patient feels insecure and uncomfortable. Accordingly, each patient ought to have access to one nurse with primary responsibility, which could require reorganization and a more adequate staffing level. Nurses and leaders on all levels of health care may have overlooked or disregarded this important aspect for patient participation. It is also crucial that nurses prioritize continuity and holism when planning their own schedules and the assigning of themselves to patients, also emphasized by Sahlsten et al. (16).
Insufficient documentation can hinder participation by making patients’ wishes and needs invisible, and thus also the things they regard as important. When patients need to repeat information already given, anxiety and dissatisfaction increase, according to informants. Patients are dependent on what nurses know about them and notes in the records, also pointed to by Bottorff et al. (40). Our findings highlight the fact that a nursing care plan not only should be a tool for nurses but also an important source of information along with a guarantee that the patient’s experiences and views are recognized and/or taken into consideration. Consequently, patients and nurses planning and implementing quality nursing care together are crucial and the patient’s control and responsibility in the situation may be optimized. The fact that patients have noticed shortcomings in nursing care plans, seem not as clearly described in earlier studies of patient participation in nursing care. However, Lindström et al. (41) found that documentation of patient participation in care and treatment often are lacking. This highlights the importance to document agreements made by patient and nurse in the care plan, something that the current informants demanded as a central aspect of security.
The number of available beds in Swedish hospitals has drastic decreased due to economic restrictions and medical improvements. This has led to a problematic situation and sometimes no bed is available for yet another patient on the ward. In order to avoid that patients in this situation may feel powerless and refused participation, they need an appropriate explanation and, together with the nurse, find a workable solution. When a patient, for example, has to move to another ward, the nurse can accompany and introduce the new primary responsible nurse. The patient ought to be invited to participate in the bedside report between the two nurses. If this handing over is made positive and the patient confirmed as a valuable partner, feelings of powerlessness, insecurity and nonparticipation will hopefully be avoided.
Conclusions
Our study contributes knowledge and understanding of patients’ experiences of barriers for participation. The findings point to remaining structures and nurse attitudes that are of disadvantage for patients’ participation. The barriers for patient participation were identified as four categories: ‘Facing own inability’, ‘Meeting lack of empathy’, ‘Meeting a paternalistic attitude’ and ‘Sensing structural barriers’ together with ten subcategories. The findings may increase the understanding of patient participation and may serve as an incentive in practice and nursing education to meet and eliminate these barriers, in quality assurance of care, work organization and further research.
Acknowledgements
Our grateful thanks go to the informants who participated in the study and openly shared their thoughts and experiences.
Author contribution
Inga E. Larsson was responsible for study design; Inga E. Larsson and Monika J.M. Sahlsten were responsible for data collection and analysis; Inga E. Larsson and Monika J.M. Sahlsten were responsible for drafting of manuscript, Kerstin Segesten and Kaety A.E. Plos were responsible for critical revisions for important intellectual content and supervision.
Funding
We would like to thank the Department of Nursing, Health and Culture, University West, Trollhättan for financial support.
