International Journal of Nursing Studies 52 (2015) 1525–1538

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International Journal of Nursing Studies journal homepage: www.elsevier.com/ijns

Review

Challenges in achieving patient participation: A review of how patient participation is addressed in empirical studies Sanne Angel *, Kirsten Norup Frederiksen Section of Nursing Science, Institute of Public Health, Aarhus University, Hoegh-Guldbergs Gade 6 A, 8000 Aarhus C, Denmark

A R T I C L E I N F O

A B S T R A C T

Article history: Received 9 July 2014 Received in revised form 7 April 2015 Accepted 12 April 2015

Background: For decades, it has been an ideal in western countries that individuals should participate in society as self-governing and autonomous subjects; however, this ideal does not always correspond to the actual experiences of individuals in their encounters with health professionals. Aim: This review identifies how empirical studies address challenges in achieving patient participation in clinical nursing. Method: We conducted a literature search for studies of patient participation in PubMed, Cinahl, PsychInfo and Scopus. In a systematic review using Garrard’s matrix method, we selected empirical studies that focused on patients’ participation in health services. Main findings: The empirical studies we investigated addressed the relationship between patient and nurse, knowledge, contact time with the patient, severity of illness and the effect of age on the degree of patient involvement. Every study thus investigated assessed patient participation as being achievable. None of the studies questioned the foundation for patient participation, which has been described in theoretical articles. The main explanation for difficulties in achieving patient participation was that expectations concerning the extent and quality of participation could be unrealistic and lead to dissatisfaction. Conclusions: Studies on patient participation identify challenges due to the nature of the relationship between laypersons and professionals, and the embedded difference in situation and knowledge. This difference may be reduced by time and a mutually positive attitude. But participation in its ideal form cannot be achieved because of this fundamental difference. Therefore, the optimal level of patient participation can only be achieved within a framework which provides both patients and health professionals with adequate time to build relationships and shared knowledge. ß 2015 Elsevier Ltd. All rights reserved.

Keywords: Matrix method Nurse–patient relationship Patient participation Review

What is already known about the topic?  Numerous guidelines and reports have been produced to promote citizens’ participation in the health services.

 Patients are expected to form their own opinion about their situation and to take responsibility for their health.  Clinical nursing practice is still struggling to live up to the expectation of patient participation. What this paper adds

* Corresponding author. Tel.: +45 051358576. E-mail addresses: [email protected] (S. Angel), [email protected] (K.N. Frederiksen). http://dx.doi.org/10.1016/j.ijnurstu.2015.04.008 0020-7489/ß 2015 Elsevier Ltd. All rights reserved.

 Empirical articles showed that the element of patient participation was patient–nurse relationship, time,

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knowledge, the patient’s situation and the nurse’s attitude as gatekeeper.  Severe illness, pure health and age impedes participation.  The level and quality of patient participation must be assessed in each situation. 1. Introduction The ideal of individuals who participate in society as self-governing and autonomous subjects has prevailed as a discourse in western countries for decades (Eldh, 2006). This ideal also exists within the health system, and since the seventies the World Health Organisation has encouraged national health systems to involve individuals in their own treatment (Alma-Ata, 1978; World Health Organization, 1998). However, studies have documented a gap between the ideal of participation and the level at which patients are actually involved in their own care (Eldh, 2006; Jacobsen et al., 2008; Storm and Davidson, 2010; Wiig et al., 2013). Reports within a Danish context state that the health services are not prepared to understand and involve their users, and not enough emphasis is placed on service users’ everyday life experiences or needs (Amtsra˚dsforeningen m.fl., 2003; Nyhedernes Tænketank Mandag Morgen, 2006; Danske Patienter, 2014). It is therefore important to identify the challenges experienced in clinical practice as obstacles to participation. This article is a review of challenges experienced in relation to ensuring patients’ participation in their own care. 2. Background The ideal of patient participation in their own treatment and care arose in the 1960s, concurrent with movements in society towards acknowledging individuals’ rights to autonomy (Eldh, 2006). Patients wanted influence and were no longer expected to blindly follow rules and the advice of authority figures, such as doctors and nurses. They were now expected to form their own opinions about their situation and to take responsibility for their health. Within the field of nursing, an oft-cited definition of participation was offered by Brownlea, who defined participation as: [. . .] getting involved or being allowed to become involved in a decision-making process or the delivery of a service or the evaluation of a service, or even simply to become one of a number of people consulted on an issue or a matter. Participation is generally held to be good for the participants and of benefit to those making decisions. Brownlea (1987, p. 605) Brownlea (1987) argued the need to identify the level of participation and the processes through which it is to be generated and sustained. This need should be seen in light of the strong ideological views on participation (Eldh, 2006), where individuals who are affected by decisions should be involved making them, and not merely in a token

fashion, but in a real sharing of power. Brownlea (1987) favoured participation in decision-making. However, there is a variety of nursing care situations where patient participation does not involve a linear decision-making process targeted to a goal (i.e., the decision). According to Jacobsen et al. (2008), the shared decision-making model aims to facilitate patients’ influence on decision making in relation to medical treatment. It is based on the idea that the doctor provides information to the patient and then, through dialogue, the health professional and patient together achieve consensus about any decisions made. Our focus in this review is not decision making but patients’ participation in nursing where the term ‘‘decision-making’’ is not used to characterise the collaboration. We embrace any collaboration where decisions may be embedded in the actions but not as a goal. We therefore focus on studies in which the concept of patient participation is used to describe the relationship and thereby the collaboration between patient and health professional. This typically relates to patients’ participation in their own care. Scholars in nursing science have focused specifically on the meaning of participation from the patient’s perspective, and the type of activities undertaken in cooperation with nurses. They have broadened the concept to cover not only decision making but also other activities in which patients could be involved. This typically relates to patients’ participation in their own care, and this collaboration is not characterised by the term ‘‘decision making’’. One of those most frequently cited, Cahill (1996, 1998), argues that patient participation has been accepted as a good thing that increases human dignity and quality of life. In her concept analysis, Cahill cites the following preconditions for achieving successful participation: 1. A relationship must exist. 2. There must be a narrowing of the appropriate information, knowledge and/or competence gap between nurse and patient using suitable modalities in different contexts. 3. There must be a surrendering of a degree of power or control by the nurse. 4. There must be engagement in selective intellectual and/ or physical activities during some of the phases of the health care process. 5. There must be a positive benefit associated with the intellectual and/or physical activity.Cahill (1996, p. 565) In 2008, Sahlsten et al.’s study, based on a concept analysis, found these attributes to be adequate, but put weight on the importance of shared power, information and knowledge adjusted to patients’ needs (Sahlsten et al., 2008). The studies mentioned above point to preconditions for achieving effective patient participation and share the belief that patient participation is achievable. Within this area of care, nurses have made efforts to facilitate patients’ participation in their own care, but as the literature points out (Brownlea, 1987; Cahill, 1996; Eldh, 2006; Sahlsten et al., 2008; Schoot et al., 2006) patient participation is a complex process, and not simply an embedded part of the patient–nurse relationship.

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Participation must be established. It is therefore important to identify which challenges in clinical practice are hindering this participation. To understand the challenges of patient participation, we need to investigate how patients’ participation in their own care and treatment is addressed within nursing. In this paper, we are particularly interested in addressing patient participation beyond decision-making in the relationship between the patient and the nurse. 2.1. Aim The aim of this review is to identify challenges in achieving patient participation in clinical nursing as identified in empirical studies. 3. Method A systematic literature review was conducted to address aspects of patient participation that lie beyond decision-making as displayed in the relationship between nurse and patient. We chose an integrative approach (Garrard, 2007) that accommodates the inclusion of studies with different methodologies in order to avoid the exclusion of important research. The review was conducted using the matrix method, developed by Garrard (2007), which aims to identify, describe and interpret research results, irrespective of the methods used by the specific study. We were able to integrate results from studies, which used different methods by interpreting the results based on criteria for how the methods were executed, and thereby deduced what the studies added about patient participation within clinical nursing. We extracted issues raised in the studies and organised them by themes, and by how they developed over time. This allowed us to identify significant elements of patient participation and depict them along a timeline. 3.1. Search strategy The search strategy involved a computerised database search for a period with no lower limit and ending at the time of the search (January 2014). The search was conducted by lead author with the assistance of an information scientist and explored the following databases: PubMed, Cinahl, PsychInfo, and Scopus. A broad search strategy was applied in order to avoid excluding important articles. The inclusion criteria were studies that dealt with patient participation (named as such) in the nursing of adult patients (aged 18+). To ensure the quality of the research and potential impact, we restricted our selection of articles to peer-reviewed publications in English with an abstract. This led to use of the broad search term ‘patient participation’, as the aim was to address patient participation that goes beyond decisionmaking in displaying the relationship between nurse and patient. We therefore excluded articles that focused on decision making to shed light on the challenges involved in patient participation in the variety of nursing care situations that do not involve a linear decision-making process, and targeted the area of patients’ participation in

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nursing where the term ‘‘decision making’’ was not used to characterise the collaboration. Potentially relevant articles were identified based on the inclusion of the terms ‘‘patient participation’’ and ‘‘nurse’’/‘‘nursing’’, etc., in the abstract. The potentially relevant articles were thereby delimited to studies that did not focus on decision making. Although other concepts such as patient involvement, partnership, etc., are used with regards patients’ engagement in health services, we chose to focus on the engagement conceptualised as patient participation. The demarcation was, accordingly, conceptual. 3.2. Eligible articles The 199 identified citations were reduced to 151 by excluding articles based on their titles, abstract or if they did not have an abstract. A resulting 48 full text articles were evaluated in detail (divided between the two authors). Research design and conclusions were assessed. Borderline articles were discussed between the authors and consensus about inclusion was reached jointly. This left 30 articles. Additionally, 11 articles were found by chain search. Eight theory-based articles were excluded, but added to the background and discussion. The final dataset comprised 33 empirical articles (32 qualitative and 1 quantitative, from Australia, Denmark, Finland, Iran, The Netherlands, Sweden, Thailand, the UK and the US) (Table 1). 3.3. Analysis From the 33 empirical articles in our dataset, we extracted ways in which patient participation was addressed and identified the challenges experienced in relation to achieving patient participation. We began by questioning how patient participation was understood, what was considered the basis for patient participation and the challenges addressed. These questions enabled us to begin our analysis. After the initial analysis, we thematised our findings, and placed them into tables by date of publication, as recommended by Garrard (2007). This enabled us to identify changes over time. The Garrard (2007) matrix method enabled us to identify the themes and the sequence of their appearance in the data. We repeatedly discussed and refined the coding and interpretation, which resulted in a model that demonstrates the relationships between the different elements of patient participation. As our goal was to identify the challenges experienced in nursing practice, we focused on the empirical studies. We identified eight articles focusing on patient participation at a theoretical level; we used these articles to contextualise and discuss the empirical studies. Among the theoretical articles, we found Ashworth et al.’s (1992) framework useful for understanding some of the challenges described in the studies. This framework guides the synthesis of our findings in the discussion part. 4. Results The patient–nurse relationship is considered crucial. In relating to the patient, the nurse should have a positive

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Table 1 Search flowchart.

199 potenally relevant arcles idenfied

151 excluded based on obviously exclusable papers (tles, abstracts, language,) 48 potenally relevant arcles 18 excluded based on reading full papers

30 relevant arcles

11 papers found

41 full text screened for detailed evaluaon 8 theorecal papers were excluded, and used to inform the field 33 included papers

attitude towards the patient’s participation and concern for the patient’s situation and to provide the required knowledge and time. To facilitate patient participation, a good relationship is described as necessary for the patient to feel acknowledged, and for information to be exchanged and transferred into knowledge and understanding. This process requires mutual co-operation and time. The model in Fig. 1 illustrates the interrelated issues described in the empirical articles on patient participation. A general feature of the articles was that patient participation was described as unquestionable and always advantageous to the patient.

some nurses considered encouraging the patient to participate an important function. This is shown in Table 2. The empirical studies identified the relationship as a major foundation for patient participation. Professionals’ abilities and willingness to facilitate patient participation were seen as a general problem (Frank et al., 2009a;

4.1. The patient–nurse relationship – professional dominance restricts patient participation The relationship between the patient and professionals was addressed in 20 out of 33 empirical articles (60%) published between 1993 and 2013. (The literature search had no lower limit; the upper limit was January 2014.) The issue was the health professional’s gatekeeper role in the relationship (Frank et al., 2009a,b; Goodwin and Happell, 2007; Haidet, 2006; Schoot et al., 2005; Tutton, 2003, 2005). This was decisive for the degree of patient influence in the relationship. If the nurse dominated the relationship, the patient did not have much influence, although some studies (Frank et al., 2009b; Haidet, 2006) showed that the patient wanted influence. After 2000, studies revealed that

Fig. 1. Key elements of patient participation.

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Table 2 Conclusions about the nurse–patient relationship. Author

Study

Conclusion about nurse–patient relationship

Kendall (1993)

A conversation analysis of 62 tape recordings of health visits and 75 interviews with the 15 patients.

Henderson, (1997, 2002)

A grounded theory study of 32 nurses and 32 patients from medical, surgical, and extended care wards.

Latvala et al. (2000)

A content analysis of video and interviews of 16 patients, 29 nurses and 7 students in a psychiatric hospital.

Sainio et al. (2001)

An interview study of 34 cancer patients’ views and experiences.

Wellard (2003) + Penney and Wellard (2007)

An ethnographic study of elderly persons’ participation in their own care, in an acute care setting of 36 patients and 31 nurses. A conversation analysis of patient participation in 10 assessment processes. An action research study of participation in care in a ward for frail elderly persons.

The relationship tended to impede patient participation because the professionals dominated the conversation, considered their own advice as legitimate, and did not acknowledge the client’s knowledge. A relationship with no room for the citizen’s perspective reduced patients’ possibilities for participation. Patient participation entailed mutual trust and rapport, positive nurse-patient attitude, sustained contact. A ‘‘meaningful interaction’’ was characterised by nurses talking with the patients about their feelings, their lifestyle, and families. Patients were mostly passive recipients of care, but when participating patients provided a foundation for better collaboration, listening to the patient, participatory dialogue and resource recognition. Patients needed support from the primary nurse and the care team. The patient’s situation and confidence were restricting factors in the relationship. Factors of importance were poor health (fatigue, inability to receive information), ignorance, fear (future, reality, authorities), age, and lack of faith in own influence. Elderly patients and nurses held contrasting views on the relationship. While the patients described themselves as eager to be involved, more of the nurses thought that the patients should do as they were told. Patient participation was not achieved during client–health visitor interaction because the health visitor dominated the process.

Mitcheson and Cowley (2003)

Tutton (2003, 2005)

Sahlsten (2005) + Sahlsten et al. (2005)

A grounded theory study with 31 nurses from a variety of hospital wards divided into 7 focus groups.

Schoot et al. (2005)

A participatory observation study of 8 nurses in 45 home care situations.

Haidet (2006)

Narrative analysis of 16 qualitative open-ended, semi-structured interviews. A study using observations, questionnaires and interviews with three patients and 2 nurses in chronic heart failure.

Eldh et al. (2006) + Eldh (2008)

Goodwin and Happell (2007)

A content analysis of psychiatric nurses’ attitudes towards consumer and career participation in care.

Frank et al. (2009a)

A phenomenographic in an emergency department of 4 registered nurses, 4 auxiliary nurses, 3 physicians.

Frank et al. (2009b)

A phenomenography in an emergency department of 9 patients.

Helgesen et al. (2010)

A grounded theory study of 17 personnel’s and 10 residents with dementia living in nursing homes.

Participation was more dependent on the willingness of the nurse than that of the patient. The study showed that establishing the nurse-patient relationship was decisive for patient participation and indeed up to the nurse. The degree to which patient participation in own care was carried out depended on the nursing staff and on the degree of nurse– patient continuity. They identified a care situation in which they judged the nurses themselves to be obstacles to the patients’ possibilities to participate. Lack of participation was explained in terms of the nurses’ ‘‘lack of knowledge’’ and by difficulties among young nurses in involving the patients. Five kinds of interactions were identified in relation to participation depending on the patients’ competencies and desire and the nurse’s allowance; the patient (1) obeys carer decision, (2) is reluctant in relation to participation, (3) desires less participation than allowed by the nurse, (4) go into dialogue, avoids interaction, (5) fights for recognitions or the nurse acting as the client wants. Patient participation was up to the professional, even though patients more or less asked for it. Participation could be understood as something offered to the patient. The study showed how the quality of the patient-nurse relationship, with recognition of the patient’s knowledge and context had consequences for the patient’s possibility to participate. Participation was a kind of collaboration, which benefited from consolidation of the relation over time. This required an acknowledgement of the participant’s value as a collaborator. The nurses were divided into two groups; one saw an important nursing function in encouraging involvement, while another group found such involvement difficult and withdrew or had negative attitudes. The nurse was a gatekeeper in relation to participation in terms of offering the patient the opportunity. The patient was allowed to participate when the nurse found that the patient was entitled to help (i.e. was sick enough). When patient participation worked, patients and staff established a relationship in which patients considered themselves to be experts on their own care situation, respected and acknowledged as individuals. Then staff were on hand and listened to and understood the patients’ concerns about matters concerning other issues than purely medical issues. The personnel–resident relationship depended on the personnel’s inviting/non-inviting attitude to persons with dementia to participate in everyday activities in a nursing home.

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Table 2 (Continued ) Author

Study

Conclusion about nurse–patient relationship

Kvangarsnes et al. (2012)

A critical discourse analysis based on 3 focus group interviews with experienced intensive care nurses. A semistructured interview study with 20 adult in-patients from 4 medical units.

A relationship was difficult to establish due to the patients suffering from COPD and often not being in their full senses.

Latimer et al. (2013)

Goodwin and Happell, 2007; Helgesen et al., 2010; Latimer et al., 2013; Latvala et al., 2000; Penney and Wellard, 2007; Wellard, 2003). They also identified a tendency for professionals to dominate the situation (Kendall, 1993; Mitcheson and Cowley, 2003; Sahlsten, 2005; Sahlsten et al., 2005; Tutton, 2003, 2005), along with a tendency to overlook the patient’s own perception of the situation (Eldh, 2008; Eldh et al., 2006; Helgesen et al., 2010; Henderson, 1997, 2002; Latimer et al., 2013; Schoot et al., 2005). The patient’s health situation and confidence also influence the balance of power in the relationship (Helgesen et al., 2010; Kvangarsnes et al., 2012; Latimer et al., 2013; Latvala et al., 2000; Sainio et al., 2001; Schoot et al., 2005). Thus, establishing the patient–nurse relationship and balancing the power embedded in the relationship was challenging. 4.2. Time, information, and knowledge – preconditions of patient participation Time, information and/or knowledge were themes addressed in 23 out of 33 empirical articles (69%) published between 1993 and 2013. A close connection was identified between sharing time and sharing knowledge. Some studies pointed to information as a key issue, without reflecting on the process involved in information leading to knowledge (Abbott et al., 2001; Almborg et al., 2009; Kendall, 1993; Mitcheson and Cowley, 2003). This could be interpreted as the focus being solely on information, or an assumption that one-way information incontrovertibly leads to knowledge. However, some studies explicitly discussed the issues involved in the patient gaining knowledge (Table 3). The studies showed that information and knowledge were fundamental to patient participation. Mutual information and knowledge were considered formative for patient participation, and the patients only stimulated to participate if they felt heard, which indicates a need for dialogue (Eldh, 2008; Eldh et al., 2006). Also, participation demands that the nurse has the required knowledge to share with the patient (Sahlsten, 2005; Sahlsten et al., 2005). One study (Almborg et al., 2009) noted that information was given primarily to the youngest and healthiest patients. Some studies showed that nurses could dominate the conversation and neglect to enquire about the patient’s perspective (Kendall, 1993; Mitcheson and Cowley, 2003). In addition, when limited time is spent with the patient (Henderson, 1997, 2002), nurses might avoid entering into a two-way conversation with the patient, because they do not feel they had sufficient time to

Experiences of negative nurse interactions (physical and emotional) often resulted in patients having feelings of frustration and anger leading to a feeling of not being heard. Patients have to be proactive to be involved in care decisions. Still, some have a passive role due to illness, cognitive impairment, and disability.

establish a relationship (Henderson, 1997, 2002). This underlines the fact that there are close links between information, time and knowledge in the nurse–patient relationship. 4.3. The patient’s situation – severe illness, poor health and age impedes participation The influence of the patient’s situation on participation was addressed in 16 out of the 33 empirical articles (48%) published between 2000 and 2013. The patient’s situation was important to the patient’s degree of participation (Haidet, 2006; Sainio et al., 2001) and influenced the assistance the nurses provided (Larsson et al., 2007; Latvala et al., 2000; Tutton, 2003, 2005). In patients who had a good basis for being able to participate, the nurse also made it possible for the patient to participate (Almborg et al., 2009). The findings are shown in Table 4: Illness and poor health had a negative effect on participation (Kvangarsnes et al., 2012; Latimer et al., 2013; Latvala et al., 2000; Sainio et al., 2001). Poor health could affect the patient’s active approach to participation (Haidet, 2006). In addition, being active could imply the need for a degree of courage (Larsson et al., 2007). Old age combined with frailty presented poor conditions for participation (Efraimsson et al., 2004, 2006), making it more difficult for nurses to encourage the patient (Larsson et al., 2007) and facilitate participation (Almborg et al., 2009; Tutton, 2003, 2005). Furthermore, participation depended on the patients’ competencies and desire for participation (Aadal and Kirkevold, 2011; Helgesen et al., 2010; Schoot et al., 2005; Soleimani, 2010). 4.4. Nurses’ attitude – power and gatekeeping Nurses’ influence on patient participation was addressed in 20 out of 23 (69%) empirical articles published between 1997 and 2007. This influence varied if nurses invited the patient to participate in the task they were helping the patient with (Tutton, 2003, 2005). In some cases the nurse’s attitude to whether it was appropriate for the patient to participate played a role (Sahlsten et al., 2005). In other cases, however, the nurse would have to be convinced that the patient was ill enough to be allowed to participate (Frank et al., 2009a). However, it was not clear in all cases if this attitude was conscious or just a result of habitual work routines which did not leave room for the patient (Latvala et al., 2000). The findings are shown in Table 5. Health professionals act as gatekeepers of patient participation (Frank et al., 2009a,b; Goodwin and Happell,

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Table 3 Conclusions about time, information, and knowledge. Author

Study

Conclusions about time

Henderson, (1997, 2002)

A grounded theory study of 32 nurses and 32 patients from medical, surgical, and extended care wards.

Lack of time precluded patient participation. This was a factor when the nurses abstained from talking with the patients.

Author

Study

Conclusions about information

Kendall, 1993

A conversation analysis of 62 tape recordings of health visits and 75 interviews with the 15 visiting nurses. A conversation analysis of patient participation in 10 assessment processes. A content analysis of psychiatric nurses’ attitudes towards consumer and career participation in care. A cross-sectional interview study with 188 stroke patients 2–3 weeks after discharge. A phenomenography in an emergency department of 9 patients.

The information flowed only one way, from the visiting nurse to their patient.

Mitcheson and Cowley (2003) Goodwin and Happell (2007)

Patient participation was not achieved because of the health visiting nurse’s one-way information. Information and respectful communication is necessary to achieve participation.

A critical discourse analysis based on 3 focus group interviews with experienced intensive care nurses. A semi-structured interview study with 20 adult in-patients from 4 medical units.

The youngest and healthiest patients were provided with most information in relation to decision-making related to discharge after acute stroke. Patients considered themselves to be participating when staff gave them information relevant to their circumstances and about what was going on around them Difficult ethical situations occurred and there was a need for pragmatic strategies to help enhance communication and information sharing. The patients experienced a need for more information and found it would improve their participation.

Author

Study

Conclusions about information and time

Abbott et al. (2001)

An interview study of 99 citizens receiving homecare.

Only a small group felt that they participated. Also among those who did feel that they participated, information and time spent together with the professional were viewed as decisive for participation in care services.

Almborg et al. (2009)

Frank et al. (2009b)

Kvangarsnes et al. (2012)

Latimer et al. (2013)

Author

Study

Conclusions about information and knowledge

Hanucharurnkui and Vinya-nguag (1991)

A RCT to investigate the effects of promoting patients’ self-care in postoperative recovery.

Pridham et al. (1998)

A study of two cases of mother’s development of care-giving competencies.

Kettunen et al. (2003)

A conversation analysis of 38 videotaped health-counselling sessions.

Efraimsson et al. (2004, 2006)

A discourse analysis of eight transcribed video-recorded discharge planning conferences. A systematic review of intervention strategies 146 papers.

The experimental group received an intervention aimed at sharing information and increasing the patient’s knowledge. The result was a higher level of satisfaction, less pain and shorter postoperative hospitalisation in this group. Participation was achieved by the professionals enquiring into the mother’s experiences and understanding and carefully following the development in the mother’s ability to recognise the child’s needs. The patient’s participation in communication provided opportunities for more therapeutic aims. However, professional engagement in the participatory relationship required professionals’ respect, interest and acknowledgement of the patient’s perspective and right to make decisions. Lack of information and knowledge prevented the patient from participating in discharge planning.

Haywood et al. (2006)

Sahlsten, 2005 + Sahlsten et al. (2005)

A grounded theory study with 31 nurses from a variety of hospital wards divided into 7 focus groups.

Eldh et al. (2006) + Eldh, 2008

A study using observations, questionnaires and interviews with three patients and 2 nurses in chronic heart failure. A grounded theory study with 26 patients from somatic hospital divided into 6 focus groups. A phenomenological study of 16 patients fast track programme, interviewed twice.

Larsson et al. (2007)

Norlyk and Harder (2009)

Sharing of knowledge was central to most strategies. This implied an active patient role, in relation to aid, diagnosis and problem solving, sharing his/her preferences and priorities for treatment or management, asking questions. The degree to which patient participation in own care is carried out depended on the nursing staff’s attitude. Their findings highlight that the nurse must have knowledge to share knowledge. Mutual information and knowledge affected the degree of patient participation, which first occurred when the patient experienced having been listened to. Sharing information increased knowledge, which again added to the patient’s capability to participate. Information played an important role. Thus, the patient had the knowledge that was necessary to make the fast track programme work.

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Table 3 (Continued) Author

Study

Conclusions about time, information, and knowledge

Sainio et al. (2001)

An interview study of 34 cancer patients’ views and experiences.

Information was a key to providing patient participation and implied time for explanation and understanding. Lack of time to encourage the patient to participate and to give and receive the required information was problematised. Also, poor health influenced patients’ ability to receive information.

2007; Haidet, 2006; Schoot et al., 2005; Tutton, 2003, 2005). This implies they have the power to encourage or hinder participation. Some studies indicated the impact of the organisational structure in the hospital (Efraimsson et al., 2004, 2006; Kvangarsnes et al., 2012), which endows nurses with authority. This may cause anxiety in the patient and lead them to keep a low profile (Sainio et al., 2001). This was especially problematic if the nurses had a negative attitude towards patient participation (Goodwin and Happell, 2007; Henderson, 1997, 2002) or lacked knowledge (Sahlsten, 2005; Sahlsten et al., 2005).

Conversely, the nurse also had it within their power to promote patient participation. 5. Discussion One criticism of our review could be that only including studies explicitly addressing patient participation may result in the omission of important issues. However, by narrowing the scope to focus on the patient and patient participation, excluding all synonyms and related concepts, we obtained a useful, manageable set of data, which

Table 4 Conclusions about the patient’s situation. Author

Study

Conclusions about the patient’s situation

Latvala et al. (2000)

A content analysis of video and interviews of 16 patients, 29 nurses and 7 students in a psychiatric hospital

Sainio et al. (2001)

An interview study of 34 cancer patients’ views and experiences. An action research study of participation in care in a ward for frail elderly persons. A participatory observation study of 8 nurses in 45 home care situations. A discourse analysis of eight transcribed video-recorded discharge planning conferences. A narrative analysis of interviews with 16 patients in primary care. A grounded theory study with 26 patients from somatic hospital divided into 6 focus groups. A cross-sectional interview study with 188 stroke patients 2–3 weeks after discharge. A phenomenological study of 16 patients fast track programme, interviewed twice. A grounded theory study of 17 personnel’s and 10 residents with dementia living in nursing homes. A grounded theory study with interviews and participant observation of 9 chronic ill patient, 8 nurses, and 5 family members.

The psychiatric hospital environment has traditional customs, rules, and norms that led to the patient’s role as a passive respondent. Thus the patients needed support from their significant others, the primary nurse, and the care team. Fatigue, poor health and lack of confidence in own influence tended to inhibit the patient’s ability to participate. When the patient was frail and elderly, the nurses’ task of facilitating participation was more difficult. Patient participation depended on the patient’s competencies to and desire for participation. Age was identified as a limiting factor; not age in itself but age as related to debilitation.

Tutton (2003, 2005) Schoot et al. (2005) Efraimsson et al. (2004, 2006) Haidet (2006) Larsson et al. (2007)

Almborg et al. (2009)

Norlyk and Harder (2009) Helgesen et al. (2010)

Soleimani (2010)

Aadal and Kirkevold (2011)

Kvangarsnes et al. (2012)

Latimer et al. (2013)

A field study of two males with after brain trauma and 2 focus group interviews with 11 interdisciplinary rehabilitation experts. Critical discourse analysis based on three focus group interviews with experienced intensive care nurses. A semistructured interview study with 20 adult in-patients from 4 medical units.

The patient’s health influenced activity in relation to achieved participation. Participation could be promoted by the patient’s active approach, which could imply the nurses’ encouragement. The younger, less impaired patients were invited to participate in decision-making, whereas the elderly were invited to participate in professional-led goals and services for them. The patient played an important role in the fast track programme without which the programme could not work. The residents’ abilities and wishes to express their thoughts are crucial. The patients involved themselves if they needed more information. However, limited experience with health care and unawareness of the diagnosis made the patient comply instead of participate. Participation demanded of the patient to be capable of cooperation. The patient’s ability to participate was reduced when limited in relation to physical skills, perception, attention, memory, emotion, and language. Patients suffering from COPD are often characterised by low levels of patient power and participation. The patients had to be proactive to be involved in care decisions. Experiences of negative nurse interactions (physical and emotional) often resulted in patients having feelings of frustration and anger, leading to a feeling of not being heard. Some had a passive role due to illness, cognitive impairment, and disability that were deemed limiting factors to being self-determining in patient participation.

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Table 5 Conclusions about nurses’ attitudes. Author

Study

Conclusion about the nurse’s attitude

Henderson (1997, 2002)

A grounded theory study of 32 nurses and 32 patients from medical, surgical, and extended care wards. A content analysis of video and interviews of 16 patients, 29 nurses and 7 students in a psychiatric hospital. An interview study of 34 cancer patients’ experiences. An action research study of participation in care in a ward for frail elderly persons.

Negative nurse-patient attitude hindered patient participation. This meant that the nurses did not prioritise spending time talking with patients. The nurses’ support of patients’ participation was impeded by the psychiatric hospital environment’s traditional customs, rule, norms, and patients’ role as passive respondents. Authorities could cause fear in patients and thereby inhibit participation. The nurse’s function as gatekeeper in regard to the patient’s participation meant that she had to acknowledge the importance of respecting the patient and his/her values. Power was a part of the organisational structure, which made it difficult for the patient to participate and obtain influence.

Latvala et al. (2000)

Sainio et al. (2001) Tutton (2003, 2005)

Efraimsson et al. (2004, 2006) Sahlsten (2005) + Sahlsten et al. (2005) Schoot et al. (2005) Haidet (2006) Goodwin and Happell (2007)

Frank et al. (2009a)

Almborg et al. (2009)

Frank et al. (2009b)

Norlyk and Harder (2009) Aadal and Kirkevold (2011)

Helgesen et al. (2010)

Soleimani (2010)

Kvangarsnes et al. (2012)

Discourse analysis of eight transcribed video-recorded discharge planning conferences. A grounded theory study with 31 nurses from a variety of hospital wards divided into 7 focus group. A participatory observation study of 8 nurses in 45 home care situations. Narrative analysis of 16 qualitative openended, semi-structured interviews. A content analysis of psychiatric nurses’ attitude towards consumer and career participation in care. A phenomenographic in an emergency department of 4 registered nurses, 4 auxiliary nurses, 3 physicians. A cross-sectional interview study with 188 stroke patients 2–3 weeks after discharge. A phenomenography in an emergency department of 9 patients. A phenomenological study of 16 patients fast track programme, interviewed twice. A field study of two males with after brain trauma and 2 focus group interviews with 11 interdisciplinary rehabilitation experts. A grounded theory study of 17 personnel’s and 10 residents with dementia living in nursing homes. A grounded theory study with interviews and participant observation of 9 chronic ill patient, 8 nurses, and 5 family members. Critical discourse analysis based on three focus group interviews with experienced intensive care nurses.

we judge to reflect the challenges involved in this area, as these were reported in a substantial proportion of the studies (48–69%). We have identified the problems of achieving patient participation as they appeared in the health care literature between 1993 and January 2014. We find that the matrix method ensures the rigour and transparency that are key to systematic reviews (Forsberg and Wengstro¨m, 2008) and meta-syntheses (Bondas and Hall, 2007; Sandelowski and Barroso, 2007). In addition, the matrix provides a solid basis for identifying possible future changes. It will be interesting to follow the development of the patient participation approach in the future. The articles included in our review described patient participation as unquestionably beneficial to the patient.

Lack of patient participation could be explained by the nurses not involving the patient that the nurses lacked skills and that nurses did not acknowledge the value of patient participation. Patient participation was only possible if the nurse allowed it. Patient participation was up to the professional, even though patients more or less asked for it. The nurse was the gatekeeper for patient participant. This was especially problematic because some nurses had negative attitudes. The nurse was a gatekeeper in relation to participation in terms of offering the patient the opportunity. The patient was allowed to participate when the nurse found that the patient was entitled to help (i.e. was sick enough). The nurses invited the younger, less impaired patients to participate in decision-making, whereas the elderly were invited to participate in professional-led goals and services for them. The nurse was seen as the gatekeeper in relation to the patient’s participation, and it could be necessary for the patient to make a big effort to become involved. The nurse had an important role in relation to supporting the patient’s participation. The patient’s participation depended on that the nurse were able to identify the patient’s ability to participate. The patient participation was based on that the nurse meet the patient on his/her own terms Personnel ignoring or not inviting the resident into a decisionmaking process hindered patient participation. The personnel’s being present with all their senses requires knowledge and competencies. This implied morals based on humanistic values. The nurses had to be experienced and find the patient capable of cooperating, in order to let the patient participate. The hospital organisational structure may limit nurses’ possibilities for engaging patients as participants. This could be when not involving patients in discussion of nursing actions because the nurse was not authorised and the doctor was not present.

This is in line with the literature on patient participation. This is especially underlined in the UN’s Convention on the Rights of Persons with Disabilities, which points to participation as a core principle (UN, 2006). This is also mirrored in the International Classification of Functioning, Disability and Health (ICF) as the ultimate goal of rehabilitation (WHO, 2001). This underscores the incontrovertible nature and presumed advantages of patient participation. In nursing, this means that supporting the patient to self-determination implies encouraging the patient to influence their own life conditions. Thus, if patient participation cannot be stimulated as a means to achieve the outcome of nursing, it will be a goal in itself until it becomes this means. However, that does not mean

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Table 6 Issues to consider in achieving patient participation. 1. 2. 3. 4. 5.

Recognition and prescription of patient participation at political and organisational levels. Establish temporal and spatial frameworks for participation. Facilitate professionals’ attitudes toward valuing the patient’s participation. Consider to what extent professional power can be transferred or ceded, i.e., the contexts in which power can be ceded. Clarify generally, and in the specific situation, what the patient can handle identifying when patient participation is possible and desirable for the individual patient in each situation.

that it is universally advantageous. The complexity of participation demands awareness of adjusting the patient’s participation to the situation; thus the patient is not required or responsible for taking part if it is not possible and meaningful, and the ethical issue is a poignant one. The challenges addressed in the articles related to five themes: the relationship between patient and nurse; time; knowledge; the patient’s situation and the nurse’s attitude. These themes are interrelated. Inspired by the matrix model, we described these themes along a timeline. This enabled us to identify changes in the themes. We were not able to identify significant changes over time, although studies published after 2000 revealed that some nurses believed encouraging the patient to participate was an important function. This may suggest that these issues are fundamental to patient participation. To achieve a deeper understanding of the challenges in achieving patient participation, we turned to the phenomenological analysis of patient participation by Ashworth et al. (1992). Despite two decades of policy and research promoting participation, we find the work by Ashworth et al. important due to their discussion of patient participation at a philosophical level. We have not found any other studies, which systematically discuss basic challenges in achieving patient participation. In their exploration of the preconditions for participation in a group, Ashworth et al. (1992) find that to become a member on an equal basis, each participant must meet certain prerequisites. However, there are often embedded fundamental differences between participants in a group, such as position, social class and status, expertise and authority (Ashworth et al., 1992). These conditions cannot be changed and result in an inequality among the members that always demands mobilisation of mutual respect and recognition. In addition, Ashworth et al. (1992) show that patient participation in a patient-professional relationship cannot constitute participation on equal terms. The nature of this relationship is unequal with regard to circumstances and possibilities. The imbalance in the patient–nurse relationship stems from the fact that the patient who has the problem is a layperson, while the professionals are those capable of solving the problems (Ashworth et al., 1992). This puts a strain on the system and on the professionals’ attitude towards the patient, as it is known that professional standards can threaten individuality. Also, the patient’s limited acquaintance with the professional group’s practice, knowledge base, language and membership will affect

their level of participation. This places the patient on an unequal footing with professionals. Ashworth et al. (1992) argue that this has a decisive effect on the degree of participation achievable. In addition, Ashworth et al. (1992) paid attention to both the patients’ and the professionals’ perspectives, underlining the importance of all participants’ mutual expectations and commitment. This implies that the preconditions for participation are: (a) attunement to mutual ‘stock of knowledge at hand’, (b) emotional and motivational attunement to the other’s concerns, (c) taking for granted (and implicitly assuming the other takes it for granted) that one can contribute worthily, (d) feeling that one’s identity is not under threat. (Ashworth et al., 1992, p. 1430) Ashworth et al. (1992) note that being a patient implies a varying degree of debilitation. Furthermore, they say that the disease may threaten the patient’s identity, and the health service setting does not support recognition of their original identity (Ashworth et al., 1992). This is supported by the empirical articles in our study, where it is revealed that the patient’s situation (e.g., being ill, having poor health or being old) impedes participation. This raises the question of whether the main explanation for the continuing difficulties in achieving patient participation may stem from unrealistic expectations. Ashworth et al. (1992) support this, and conclude that patient participation must be adjusted in relation to their situation, the environment and the parties involved. We can no longer imagine that patient participation can take place in its ideal form, as two or more people equal in knowledge and power. As Ashworth et al. (1992) point out, the conditions are not equal when a layperson seeks out a professional; therefore, the participation cannot be totally reciprocal. The layperson leaves a part of their autonomy in the hands of the professional in the hope of a better result than they would achieve alone. The resulting distortion of power is entirely embedded in the situation. Based on this consideration, it makes sense to see patient participation in terms of how much autonomy the patient can advantageously surrender in order to regain most control. This makes it meaningless to speak of patient participation as a large, abstract entity. Rather, it seems necessary to clarify when the patient must participate if it is at all possible, can participate if it is appropriate in relation to other demands or can participate eventually. At the same time, participation can take place in the form of the patient sharing in a common task, or leaving decisions or actions entirely in the hands of others. This is in line with what Brownlea said in 1987, underpinning the importance of identifying the goal to be achieved through participation, what motivates it and how the participation is organised, so that it is systematic, flexible and productive (Brownlea, 1987). It is therefore necessary to identify the areas where participation is desirable and undesirable and to identify the level and mechanisms by which participation is to be generated and sustained. This is where nurses’ attitudes as the gatekeepers of patient participation come into play. However, more studies showed a tendency towards

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Fig. 2. Key elements of patient participation.

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professional dominance due to organisational circumstances or a nurse’s insecurity. These must not be confused with the situation where the nurse takes responsibility for the patient not being able to participate actively. Our reading of Ashworth et al.’s (1992) work helps to elaborate on the importance of the elements we identified in the empirical articles, and which were only superficially addressed. Awareness of these elements provides operational possibilities with regards the problems addressed in the empirical articles. This is illustrated in a model that visualises the challenges and potential for patient participation (Fig. 2). The embedded complexity of participation is an important issue concerning promoting patient participation. This is underlined by the focus on strategies to promote patient participation. Haywood et al. (2006) find 146 articles in their systematic review, and reveal that patient participation primarily involves an effort from the professionals. The fact that strategies to promote patient participation have been developed indicates that patient participation is not simply a matter of course. In several of these strategies, the effort was directed towards helping the patient play an active role, in terms of providing information, prioritising and identifying approaches that best met their needs, preferences or priorities. In Ashworth’s (1992) analysis, for participation to take place at all, a mutual respect is required where both the professionals and the patient have a positive attitude in the form of an expectation that the other’s attitude and knowledge will contribute positively to solving their shared problem. But intention and attitude are not enough. Our review demonstrates the mutual relation between time and sharing of knowledge. This means that physical and temporal space must be established as a precondition for patient participation. These spaces place pressure on organisational frameworks. If this space is not established, the relational basis for patient participation or the cooperative basis where participation occurs will not develop. Regardless of whether the cooperation is equally divided or is more or less weighted to one or the other party, clarification is required regarding how each of the parties views the task, what they know about it, how it can be solved, what one or the other can do and what is the most appropriate course of action. The importance of promoting a positive attitude among professionals should not be underestimated. Nor is it a simple task. An example of the complexity of promoting patient participation is provided by Schoot et al.’s (2007) action research study. This comprehensive effort, over a number of months, to create a common positive attitude to patient participation shows that attitudes are not easily changed and that any eventual changes have to be implemented in practice, tested and maintained by the community. 5.1. Implications for clinical practice The question is whether the clarification of the possibilities for patient participation can create a change in the discourse and in clinical practice. The statement

that patient participation cannot be achieved on an equal footing with professionals, requires a clarification of the extent to which it is desirable in each individual case. This calls for a continued attention to the patient, and to their involvement in determining the degree to which participation is desirable and achievable. In line with Brownlea (1987), Cahill (1996, 1998), and Sahlsten et al. (2008), we do not consider participation as an equal sharing of power. Rather, it seems necessary to individually assess the level and quality of participation and to respect situations in which patients’ interest in participation is low (e.g., because of their health situation). From the results of our analysis of challenges addressed in clinical practice, attention is needed at both micro and macro levels to address each patient individually, as suggested in Table 6: This awareness may render it possible to minimise some of the limitations surrounding participation and to operate with more realistic expectations. 5.2. Limitations of this study In this study we have chosen to only include articles addressing the concept of patient participation. This may be a limitation. We wanted to scrutinise research into patients’ participation in care. Our focus was not on decision making, even though decision making in relation to, for example, daily activities such as grooming or eating may be addressed within the articles included. Hence, we have chosen to exclude research into shared decision making as well as research into the relationship between patients and health professionals if concepts other than patient participation have been used. We may therefore have excluded elements of the relationship described with other concepts and by including derivatives, different understandings may have been disclosed. 6. Conclusion Empirical studies addressing patient participation do not consider whether it is at all possible to overcome the embedded societal structures in which patients must participate. However, participation in its ideal form cannot be achieved, because of the specific, unequal relationship between laypersons and professionals. These limitations were not mirrored in the identification of challenges in the empirical studies. With this in mind, in each case it must be considered whether patient participation is possible. Therefore, the optimal level of patient participation can only be achieved within a framework for both patients and health professionals in which adequate time is granted to build relationships and shared knowledge. Patient participation should be considered on a case by case basis, based on the patients’ situations and nurses’ attitudes. Conflict of interest None of the authors have any conflicts of interests

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Funding The analysis and work with this paper received no funding.

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Challenges in achieving patient participation: A review of how patient participation is addressed in empirical studies.

For decades, it has been an ideal in western countries that individuals should participate in society as self-governing and autonomous subjects; howev...
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