Patient participation in clinical decision-making ... - Wiley Online Library

ISSU ES I N CLINICA L NUR SIN G

doi: 10.1111/j.1365-2702.2005.01464.x

Patient participation in clinical decision-making in nursing: a comparative study of nurses’ and patients’ perceptions Jan Florin

MSN, RN

Lecturer, Department of Health and Social Sciences, Dalarna University, Falun, Sweden

Anna Ehrenberg

PhD, RN

Assistant Professor, Department of Health and Social Sciences, Dalarna University, Falun, Sweden

Margareta Ehnfors

PhD, RNT

¨ rebro University, O ¨ rebro, Sweden Professor, Department of Caring Sciences, O

Submitted for publication: 28 May 2005 Accepted for publication: 07 September 2005

Correspondence: Jan Florin Lecturer Department of Health and Social Sciences Ho¨gskolan Dalarna 791 81 Falun Sweden Telephone: 46 23 778446 E-mail: [email protected]

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F L O R I N J , E H R E N B E R G A & E H N F O R S M ( 2 0 0 6 ) Journal of Clinical Nursing 15, 1498–1508 Patient participation in clinical decision-making in nursing: a comparative study of nurses’ and patients’ perceptions Aims and objectives. The aim of this study was to compare the degree of concordance between patients and Registered Nurses’ perceptions of the patients’ preferences for participation in clinical decision-making in nursing care. A further aim was to compare patients’ experienced participation with their preferred participatory role. Background. Patient participation in clinical decision-making is valuable and has an effect on quality of care. However, there is limited knowledge about patient preferences for participation and how nurses perceive their patients’ preferences. Methods. A comparative design was adopted with a convenient sample of 80 nurse– patient dyads. A modified version of the Control Preference Scale was used in conjunction with a questionnaire developed to elicit the experienced participation of the patient. Results. A majority of the Registered Nurses perceived that their patients preferred a higher degree of participation in decision-making than did the patients. Differences in patient preferences were found in relation to age and social status but not to gender. Patients often experienced having a different role than what was initially preferred, e.g. a more passive role concerning needs related to communication, breathing and pain and a more active role related to activity and emotions/roles. Conclusions. Registered Nurses are not always aware of their patients’ perspective and tend to overestimate patients’ willingness to assume an active role. Registered Nurses do not successfully involve patients in clinical decision-making in nursing care according to their own perceptions and not even to the patients’ more moderate preferences of participation. Relevance to clinical practice. A thorough assessment of the individual’s preferences for participation in decision-making seems to be the most appropriate approach to ascertain patient’s involvement to the preferred level of participation. The categorization of patients as preferring a passive role, collaborative role or active role is seen as valuable information for Registered Nurses to tailor nursing care. Key words: clinical decision-making, nurse–patient interaction, nursing, patient participation

2006 The Authors. Journal compilation 2006 Blackwell Publishing Ltd

Issues in clinical nursing

Introduction What role do patients want to have in the clinical decisionmaking of their own care? In the past few decades health care systems in Western countries have departed from a paternalistic approach to one emphasizing patient participation and autonomy in decision-making, implementation and managing of their own care (WHO 1978, SFS 1982). Emphasis is therefore on the patient and the benefits of a more active patient role in clinical decision-making (Baumann et al. 1998). This view is partly based on the belief that autonomy holds both instrumental and intrinsic values (Hermere´n 1996), but also on the notion of positive health outcomes from patients’ active participation. Guadagnoli and Ward (1998, p. 337) stated that: ‘patient participation in decisionmaking is justified on humane grounds alone and is in line with a patient’s right to self-determination’. The concept of patient participation is often used interchangeably with such terms as patient collaboration, involvement and partnership (Jewell 1994, Cahill 1996). Brownlea provided a definition of patient participation: Participation means getting involved or being allowed to become involved in a decision-making process or the delivery of a service or even simply to become one of a number of people consulted on an issue or a matter (1987, p. 605).

Fundamental requirements for more active patient participation in clinical decision-making are the nurse–patient relationship (Cahill 1996) and access to sufficient relevant information (Jewell 1994). The nurse–patient relationship is often described as unequal or asymmetric because of differences in the knowledge base of the Registered Nurses (RNs) and patients. Whenever patient autonomy is at stake, health professionals ought to consider the patient’s right to participate seriously, respect patient choices and obtain informed consent before providing care (Beauchamp & Childress 1994, Aveyard 2002). However, RNs seem reluctant and apprehensive to provide patients with more information than they feel is necessary and to share decision-making power with them (Henderson 2003). Models for participation in clinical decision-making have ranged from paternalistic models through advocate models, informed choice models and shared decision-making towards more increased patient control and, ultimately, autonomy (Hickey & Kipping 1998, Charles et al. 1999). Patients’ preferences for participation have been described in detail, ranging from passive recipient roles to more active collaborative roles (e.g. Degner & Sloan 1992, Sahlberg-Blom 2001, Sainio et al. 2001, Latvala 2002). Growing evidence suggests that patient preferences for participation in clinical decision-

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making differ because of age, gender, socio-economic status and severity of the medical problem (Degner & Sloan 1992, Degner et al. 1997, McKinstry 2000, Henderson & Shum 2003), but the findings are inconclusive. Cahill (1998) concluded that patients generally preferred to be active but that caregivers preferred to see patients as more passive recipients of care, even though they acknowledged the positive value of active involvement. Jewell (1994) concluded that RNs regarded active participation as both a goal and a means in nursing care. However, patients’ participation was equally dependent on the willingness of RNs to involve patients and on organizational issues such as the current workload on the ward (Larsson 1989, Allen 2000). RNs often hold positive views of patient participation (Keatinge et al. 2002), but observational studies have shown that RNs largely exclude patient participation by their actions in practice (e.g. setting the agenda). However, this did not seriously conflict with the patients’ expectations and assumptions of appropriate ways of communication within health care (Larsson 1989, Wellard et al. 2003). All patients do not want an active participatory role; on the contrary, some patients were more concerned with doing ‘what was right’ to please the RNs (Waterworth & Luker 1990). In clinical settings where active participation is encouraged, patients might comply and be more active than they actually desire. Moreover, patients might want to receive information about treatment alternatives but not to take part in the subsequent decisions. Findings indicate that longer interaction with health professionals may be necessary for patients’ information seeking communication behaviour and participation in decision-making (Beisecker & Beisecker 1990). A number of studies have focused on patient participation in clinical decision-making in medicine, often in relation to choice of treatment (e.g. Beaver et al. 1996, 1999, Protie`re et al. 2000, Ramfelt et al. 2000, Roter 2000), or on participation in rehabilitation (Wressle 2002). Studies on clinical decision-making in relation to nursing are rarer but patient perspective on participation has been described (Biley 1992) and differences in opinions on perceived opportunities to participate in clinical decision-making between RNs and older residents have been reported (Scott et al. 2003). In this study, RNs constantly overrated the opportunity given to older people as compared with the perceptions of older people. Registered Nurses are in a pivotal position to identify, facilitate and support patients’ preferences for participation in clinical decision-making. However, there is a risk of misinterpreting patients’ inability to perform self-care activities also to include their ability to participate in clinical


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decision-making. Performing self-care activities and participating in clinical decision-making are distinct different features. Hence, it is of vital importance for RNs to have knowledge of their patients’ preferences for participation to build a strong nurse–patient relationship and to deliver care according to those preferences. Presently, however, knowledge of patient preferences of participation in clinical decision-making in nursing within acute care environments is sparse. Access to such knowledge could enhance RNs’ possibilities to use patient’s preferences for participation in clinical decision-making as a means to tailor individualized nursing care which would, presumably, have a positive effect on the quality of nursing care. Therefore, the aim of this study was to compare the degree of concordance between patients and RNs’ perceptions of the patients’ preferences in participating in clinical decision-making in nursing practice. A further aim was to compare patients’ actual level of participation in clinical decision-making in nursing with their preferred participatory role.

Method This study used a comparative design. Data collection was conducted during a three-month period on an infectious disease ward at a Swedish regional hospital with a catchment area of approximately 300 000 inhabitants. Consecutive dyads of patients and RNs were included in the study. Each nurse contributed with 1–5 assessments. The patients were assessed twice – once at admission and once at discharge. Ethical approval was obtained from the research ethics committee at Uppsala University and permission to conduct the study was obtained from the chief executive at the clinic. Written and oral information was given to participants stressing the voluntary nature and confidentiality of participating in the study.

Sample The study group consisted of 80 nurse–patient dyads using a consecutive sample of patients from the eligible patient population (n ¼ 330) meeting the following inclusion criteria: (1) aged 18 years or older, (2) admitted to the ward less than 48 hours before data collection and expected to stay for at least three days, (3) able to communicate in Swedish and (4) participation did not jeopardize the current health condition of the patients as judged from the interviewer’s (JF) own experience as an acute care nurse (Fig. 1). A final inclusion criterion was that the RN in charge of the patient’s care during the day of data collection gave consent to participate in the study. The patients (43 men and 37 women) 1500

Figure 1 Sample selection.

had a mean age of 59 years (SD: 16Æ5 years; range: 23– 84 years). The vast majority (98%) of the patients were acutely admitted to the ward. Most prevalent medical diagnoses were gastroenteritis (n ¼ 27), various wound infections (n ¼ 14) and pneumonia (n ¼ 11). The co-morbidity index was negatively skewed with a median value of 1 [Interquartile range (IQR) 0–3]. The patients were admitted to the ward for a median time of five days (IQR four to seven days) and with a median length of stay before data collection of 26 hours (IQR 20–39 hours). Seventeen patients in the initial study group declined participation at follow up, leaving a final sample of 59 (74%) patients to be included in the analyses. No differences were found on gender, age or social status between the patients participating at follow up and those who did not participate. All RNs (n ¼ 35) working at least part time during the day at the ward were invited to participate in the study. Of these 35 RNs, 30 participated in nurse–patient dyads. The RNs had a median age of 31 years (IQR 28–40), had worked in the nursing profession for a median of 1Æ5 years (IQR 1Æ0–4Æ3) and had a median of one year (IQR 0Æ9–3Æ1) employment on the


Issues in clinical nursing

ward in question. In four of the dyads the RNs did not provide any data. Subsequently, the final sample comprised 76 nurse– patient dyads and 59 patients’ describing their preferred and actual participatory role in clinical decision-making.

Instruments The Control Preference Scale (CPS), a card sort technique with five options, was used (Degner & Sloan 1992). The CPS has previously been used to elicit patients’ preferred roles in decision-making in medical care (Degner & Sloan 1992, Beaver et al. 1996, 1999). Compared with the original instrument, the wording of the cards was modified to focus on the nurse–patient relationship and decision-making in nursing, and the scale order was reversed. The cards ranged from a more passive role (cards A and B), through a collaborative role (card C) to a more active role (cards D and E) as displayed in Fig. 2. The five cards together create an ordinal scale ranging from ABCDE to EDCBA, representing different degrees of patient control with 120 possible permutations of the cards. Patients used the CPS to state their preferred clinical decision-making role in the dimensions: (1) needs of nursing care in general, (2) physiological needs and (3) psychological/ spiritual needs. The five cards were also transformed into descriptions in a questionnaire in which RNs were asked to state how they perceived their patients’ preferences by ordering the cards A, B, C, D and E for each dimension. The wording of the descriptions was rephrased to reflect an outside perspective: ‘The patient prefers to…’ instead of ‘ I prefer to…’. A follow-up self-reporting questionnaire designed for patients was developed using the descriptions on the five cards in the CPS. The questionnaire covered both physical and psychological/spiritual needs, divided into nine broad categories: communication, breathing and circulation, nutrition, elimination, skin care, activity, sleep, pain and psychosocial needs and problems. The categories were labelled using the key words for current health status in the Swedish VIPS

Figure 2 Statements on the role preference cards modified after Degner and Sloan (1992).

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model (Ehnfors et al. 2002). Actual roles in decision-making in nursing care were elicited by having patients select one card for each of the nine categories, if applicable, that best described their decision-making role during hospitalization. Patients weighted sum of comorbid conditions was investigated using Charlson’s Comorbidity Index in which diagnoses received a weight ranging from 0 to 4 points depending on the seriousness of the condition (Charlson et al. 1987). Procedure Patients were invited to participate in the study by JF after receiving written and oral information about the study. After answering a questionnaire on the presence and severity of nursing problems (reported elsewhere), the patients were asked to sort the CPS cards. The cards arranged from A to E were presented all at once to the patients. The patients then placed all the five cards in order according to their preferences on a paper with marked areas from 1 to 5, where 1 indicated the most preferred role and 5 indicated the least preferred role. This was done three times covering the dimensions of needs of nursing care in general, physiological needs and, finally, psychological/spiritual needs. The initial card order was re-established before patient preferences were stated for each dimension. The RN assigned to the patients’ care received the questionnaire and was asked to complete it during the current work shift. Patients received the follow-up questionnaire before leaving the hospital and could either respond directly by handing in the questionnaire in a sealed envelope, or take it home and return it by mail in a prestamped envelope. Agreements were made with five patients having severely limited vision to respond to the follow-up questionnaire by a telephone interview. These interviews were conducted within a week after discharge from the ward. Analyses The entire preference order was used in the description of patients and RNs’ opinions of patient preferences of participation in clinical decision-making. The original five-point ordinal scale was collapsed into a three-point scale, creating three categories in which the cards A and B indicated a passive role, card C a collaborative role and cards D and E an active role. Differences between patient subgroups were analysed using Mann–Whitney U-test, where the sample was divided into two subgroups because of gender (man or woman), social situation (living together with someone or living alone) and age (using the median of 61 years of age as the cut-off point for identifying younger and older patients). Patients and RNs’ selections of cards indicating the patients’ most preferred role in clinical decision-making were used for


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comparison between groups by Sign test (Altman 1991). Probability values below 0Æ05 were regarded as significant. A discrepancy score was calculated to investigate the difference between patients’ preferred role and their actually experienced role in decision-making during hospitalization. The first choice of card was used and each card from A to E was given a corresponding number from 1 to 5. A discrepancy score was calculated by subtracting the preferred role score from the experienced role score (e.g. experienced role D and preferred role B, 4 2 ¼ 2). A positive discrepancy score indicates that the patient had a more active role than what he or she preferred while a negative score indicates a more passive role than preferred. The patient was categorized as being more active, equal or more passive as compared with his or her preferences based on the individual’s mode value for the nine categories mentioned before.

Figure 3 Frequency of patients’ (n ¼ 76) individual preference as displayed by order.

Findings Decision-making role preferences Patients most often preferred adopting a passive role (61%, n ¼ 46) and the most frequent choice of preference order was ABCDE (20%, n ¼ 16), and for RNs it was CDEBA (14%, n ¼ 11). Patients never picked the card E (self-determination) as their first choice of preference, whereas the RNs in 12 of the 76 dyads did so. Patients preference order concerning needs of nursing care in general is displayed in Fig. 3 and RNs perceptions of patient preferences in Fig. 4, including only the first choices from 13 RNs. Closer analyses revealed that a large proportion of the patients (36%, n ¼ 27) chose a preferred role consistent with a dimension of collaboration rather than choosing the extremes. Thus, preferring all the roles that involved some degree of collaboration (cards B, C and D) before choosing any of the extremes (cards A and E). Thirteen (17%) of the RNs’ choices fell on the same hypothesized dimension of collaboration vs. extremes. No differences in patients preferred roles were found with regard to gender, but younger patients (