An Analysis of the Concept of Patient Participation

Authors

  • Monika J. M. Sahlsten PhD, MSc Nursing, BSc Health Service Adm., RN,

    1. Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden
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  • Inga E. Larsson MSc Nursing, BSc Health Service Adm., RN,

    1. Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden, and a Lecturer at the Department of Nursing, Health and Culture, University West, Trollhättan, Sweden
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  • Björn Sjöström PhD, RN,

    1. School of Life Sciences, University of Skövde, Skövde, Sweden
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  • Kaety A. E. Plos PhD, BSc

    1. Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden
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  • Monika J. M. Sahlsten, PhD, MSc Nursing, BSc Health Service Adm., RN, is at the Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden; Inga E. Larsson, MSc Nursing, BSc Health Service Adm., RN, is a doctoral student at the Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden, and a Lecturer at the Department of Nursing, Health and Culture, University West, Trollhättan, Sweden; Björn Sjöström, PhD, RN, is Professor at the School of Life Sciences, University of Skövde, Skövde, Sweden; and Kaety A. E. Plos, PhD, BSc, is a Senior Lecturer at the Institute of Health and Care Sciences, The Sahlgrenska Academy at Göteborg University, Göteborg, Sweden.

Author contact: monika.sahlsten@swipnet.se, with a copy to the Editor: nursingforum@gmail.com

Abstract

The concept of patient participation has an array of interpretations and lacks clarity. The purpose of this article is to explore the concept of patient participation within the context of nursing practice. The method described by Walker and Avant (1995) is used. The critical attributes of the concept are identified. Formation of model, borderline, and contrary cases exemplifies key characteristics. Antecedents, consequences, and empirical referents presented allow for further refinement of the key attributes defining the concept. Patient participation in nursing practice can be defined as an established relationship between nurse and patient, a surrendering of some power or control by the nurse, shared information and knowledge, and active engagement together in intellectual and/or physical activities.

Introduction

Patient participation is an essential basis of medical treatment and nursing care, and the patient's position has been increasingly strengthened in recent decades, both internationally and nationally (Eldh, Ehnfors, & Ekman, 2004; Nordgren & Fridlund, 2001). The traditional view is replaced by expectations of an active patient involved in his or her own care. Despite this, patients have experienced insufficient participation, and dissatisfaction and complaints appear to be increasing (Coulter & Magee, 2003; http://www.pickereurope.org). Participation is known to reduce stress and anxiety (Lauri & Sainio, 1998) and increases patients’ motivation and satisfaction with received care (Williams, Freedman, & Deci, 1998). However, each patient and each nurse may have his or her own opinion or ideas about the meaning and implementation of patient participation.

Patient participation, despite being widely used every day, remains an elusive and complex concept, which is of uttermost importance to nursing. Concepts are both the foundation of and necessary for advancement of the knowledge base of nursing as well as being essential for precise communication and critical thinking (Cahill, 1996). Concepts may be regarded as mental constructions of phenomena, which enable a formation of conceptual definitions allowing examination to attempt ordering of environmental stimuli (Walker & Avant, 1995). Concept analysis is a valuable methodology that can be used to clarify overused concepts with vague meaning that are prevalent in nursing practice.

This article presents an analysis of the concept of patient participation and its relation to nursing by identifying the meaning of the concept from the literature. The basic principles from Walker and Avant's (1995) model for concept analysis are used to examine, determine, and define attributes and characteristics of the concept of patient participation. The model consists of eight steps used to highlight aspects and essential attributes of the concept (Table 1). Although the steps seem to be a linear process, many of them occur simultaneously. For ease of presentation, each step will be considered separately.

Table 1. Eight Steps of Concept Analysis According to Walker and Avant (1995)
1. Select a concept
2. Determine the aims of analysis
3. Identify the uses of the concept
4. Determine defining attributes
5. Develop a model case
6. Develop additional cases: borderline and contrary cases
7. Identify antecedents and consequences
8. Define empirical referents

This concept analysis focuses on the time period from 1996 to 2005. The analysis is based on research articles published after the concept analysis of patient participation performed by Cahill (1996) and the same methodology is used. The time period Cahill examined was not explicit but estimated to include up until 1995; specifics regarding details of the sample are lacking. In the present concept analysis, the databases used to search for relevant articles and literature were CINAHL and MEDLINE with patient participation used as a key term.

Selection of Concept

The concept of patient participation is central to nursing practice. It has been emphasized as a good thing (Tutton, 2005), enabling patients to maximize their potential for comfort (Bottorff et al., 1998). The right of patients to participate in planning, decision-making, and carrying out activities concerning their care is stressed in nursing as well as public opinion and legislation (Efraimsson, Sandman, Hydén, & Rasmussen, 2004). The nurse is expected to play a key role in facilitating and encouraging patients to participate. Despite the concept's significance in current nursing practice, it has still not been adequately articulated and continues to be elusive. A diversity of opinions exists concerning the way both patients and nurses view the concept (cf. Eldh, Ehnfors, & Ekman, 2006; Tutton).

Although patient participation has been a widely researched and debated phenomenon in health care in the last three decades, there is still an array of interpretations. The lack of clarity associated with the concept may have resulted in patient participation becoming a nursing tokenism (Roberts, 2002).

Aims of Analysis

In striving to attain conceptual clarity, the analysis may make it possible to promote a single vocabulary for discussion while understanding what the parameters of patient participation are. Accordingly, the aim of the analysis is to identify and explore the attributes of the concept, and to clarify and elucidate the meaning and nature of the concept of patient participation within the context of nursing practice. It may provide a pattern for challenging and criticizing the concept within the context of nursing practice. This concept analysis also intends to illuminate the role of the nurse in relation to patient participation and highlight the skills, knowledge, and experience nurses require to practice.

Uses of the Concept of Patient Participation

Walker and Avant (1995) claim that this step should include as many uses of the concept as can be found. These include consulting dictionaries, thesauri, and examined articles.

According to the Concise Oxford English Dictionary, the word participation means to be involved and to take part in (Soanes & Stevenson, 2004). The term is derived from the Latin participare, which means share in, and is based on pars, part- + capere (take). Merriam–Webster OnLine states that participation means the act of participating and the state of being related to a larger whole (http://www.webster.com). Oxford Reference Online provides further explanation: involvement, part, contribution, and association (http://www.oxfordreference.com). According to Reference.com, participation as ownership means sharing something in common with others. In finance, it is an ownership interest in a mortgage or other loan. Participation is also used as a synonym of profit sharing, an incentive whereby employees of a company receive a share of the profits of the company (http://www.reference.com). There are several synonyms of participation: alliance, association, attendance, communion, cooperation, experience, interest, and membership (http://www.thesaurus.reference.com).

The term participation has been discussed in differing contexts. Collective or indirect participation practiced as lay participation in research, formulation of policy, and the commissioning of services (Allen, 2000), or as a third-party parent, close relative, or carer (Roberts, 2002). Individual participation may be practiced in, for example, health care and promotion, mental and social care (e.g., Lammers & Happell, 2003; Obeid, 2000), and in different situations; for example, discharge planning (Efraimsson, Sandman, Hydén, & Rasmussen, 2004; Jewell, 1996; Roberts, 2002), decision-making in treatment/care (Caress, Luker, & Akrill, 1998; Henderson, 2002; Sainio & Lauri, 2003; Sainio, Lauri, & Eriksson, 2001), and bedside reporting (Timonen & Sihvonen, 2000). The meaning of the term has also been explored (Eldh et al., 2004, 2006; Tutton, 2005) and instruments to measure participation have been tested and constructed (Caress et al.; Latvala, Saranto, & Pekkala, 2004; Ramfelt, Lützen, & Nordström, 2005). Participation in medical treatment decisions has received the greatest attention (Guadagnoli & Ward, 1998; Wellard, Lillibridge, Beanland, & Lewis, 2003).

The present concept analysis reveals that studies of patient participation in nursing care are still not congruent regarding definition, elements, and processes (e.g., Gallant, Beaulieu, & Carnevale, 2002). This lack of clarity is amplified by the use of several terms: patient/client/consumer/user involvement or collaboration (e.g., Langton, Barnes, Haslehurst, Rimmer, & Turton, 2003) and partnership (e.g., Henderson, 2003). Patient/client seems to refer to current recipients of health/mental/social care. Consumer participation appears to be used interchangeably with user participation (Lammers & Happell, 2003). However, Langton et al. claim that there is a difference: consumer relates to the right to make choice and user is a broad term that involves a current or potential healthcare recipient. Patient participation seems to include and be used interchangeably and synonymously together with user involvement (Anthony & Crawford, 2000; Doherty & Doherty, 2005; Evans et al., 2003; Hickey & Kipping, 1998). The term collaboration seems to have diminished in significance and is seldom used. One possible explanation of the use of several terms can be derived from governments’ and decision-makers’ different denominations of patient participation in policy documents.

Patient participation in the context of professional nursing practice can be related to a few definitions. Jewell (1996) identifies patient participation as representing a philosophical approach to patient care and also as a practical component of patient care. The philosophical approach includes: “individual or holistic care, realistic plans based on negotiation, a positive outcome for patients and encouraging patients to be active rather than passive during their hospital stay” (p. 916). The practical component involves: “using the nursing process, seeing what the patient wants, seeing what the patient wants regarding discharge, self-care i.e., physically take part in care, and informing patients during their hospital stay” (p. 916). Henderson (2000) concludes that patient participation means being involved in the decision-making process concerning the delivery and evaluation of the patient's own care. Determining means treating patients as individuals, taking into account patients’ opinions, and giving them control with regard to their own care. Tutton (2005) defines patient participation as a dynamic process that changes over time and is integral to the work of nurses and carers. This process is carried out through facilitation, partnership, understanding the person, and emotional work. Partnership is seen as an essential process that underpins participation by identifying the values and beliefs on which negotiation is based. Staff may make decisions for patients but these decisions are participatory through this dynamic process.

Patient participation can also be described in terms of elements and processes. Allen (2000) claims that it is vital to be aware of the differences between the “role” and “task” elements of patients’ participation and to keep them distinct. Failure has resulted in conceptual confusion and faulty assumptions of increased participation in tasks implying parallel changes in the role, i.e., greater power for the patient. Sainio, Lauri, and Eriksson (2001) state that patient participation relates to being involved in decision-making or expressing one's views on different treatments. It includes sharing information, communicating feelings and symptoms, and compliance with nurses’ and physicians’ orders. According to Eldh et al. (2004), patient participation is to be confident, and to comprehend, seek, and maintain a sense of control and recognition of one's own responsibility as a patient. From a nurse perspective, participation is more about patients getting individually adjusted information so they can act (Eldh et al., 2006). To sum up, patients experience participation as something that they have and accept—a personal active attitude; whereas nurses experience it as something that they give to the patient—they activate.

Obeid (2000) states that user participation is a dynamic process, moving beyond only having a voice, being involved in evaluation and towards actual planning of care services and delivery. It includes a person-centered philosophy, such as an equal relationship and sharing with a supportive facilitator. Wellard et al. (2003) notes consumer participation such as sharing information, opinions, and decision-making power. It should not be limited to a question of shared clinical decisions, but instead involve a general involvement with individuals in everyday aspects during their hospital stay.

Patient participation can be related to difference in attitude. Jewell (1996) claims that the control professionals have over their practice affects the level of active patient participation. It is the nurse's commitment to participation that makes it happen. Hickey and Kipping (1998) report on a participation continuum from consumerist to democratization approach. This includes four positions of transferring decision-making power to the user: (i) information/explanation, and (ii) consultation with no such transferring, (iii) partnership including joint decisions, and (iv) user control, i.e., power is redistributed so the user makes the decision whether to involve someone else.

Roberts (2002) reports that the most applicable levels of participation are currently informing, consultation, and placation, denoted as tokenism, and suggests a passive role for participants. Three types of people in relation to participation are identified: those who (i) express their views and opinions or state their preferences without prompting—these people displayed the greatest willingness to participate but still preferred experts to have the final say; (ii) express their views and opinions or state their preferences when invited to do so—these people could either wish to play an active role or respond to the role they felt was expected; and (iii) accept the decisions that are made—these people preferred professionals to act on their behalf.

Lammers and Happell (2003) stipulate that consumers should be given the opportunity to participate in accordance with individual interest, attributes, need, and ability. Sainio and Lauri (2003) and Eldh et al. (2004) confirm that level of participation needs to be an issue for dialogue between nurses and patients because preferences change over time and phases of the disease and treatment. Discussing the issue is essential because Caress et al. (1998) allege that some patients exceed their preferred level of participation. Passivity may be the result of fear or perceived lack of knowledge. When patients prefer a passive role, which appears to be well considered and genuine, health professionals should respect this preference.

The degree of patient participation depends on several factors, internal as well as external. The internal factors that have been identified are the patient's physical ability, willingness and ability to make rational decisions (Jewell, 1996), attitude towards self-care, cultural backgrounds, desire to be a “good” patient, level of medical knowledge, and previous hospital experience (Henderson, 2002). Age, marital status, and time since diagnosis also exert an influence (Sainio & Lauri, 2003). Not understanding and not being accountable are experienced as not participating at all (Eldh et al., 2004). The external factors that affect a patient's desire to participate are that nurses provide information (Sainio & Lauri), encourage questions, use everyday language, and focus on and spend more time with the patient (Timonen & Sihvonen, 2000).

A number of factors have been identified as restricting participation: conflict between patient and carer and overprotection by nurses (Jewell, 1996), limited communication between nurses and patients, task-oriented nursing labor, environmental constraints limiting patients’ privacy (Wellard et al., 2003), and when patients lack an equal relationship, respect, and information (Eldh et al., 2006). Professionals not attuned to the concerns of the patient and his or her individual needs, and who literally silence or disregard the patient's wishes, produce nonparticipation (Efraimsson et al., 2004).

Determined Defining Attributes

This step identifies the characteristics of the concept that repeatedly appear when the concept is defined or described (Walker & Avant, 1995). These characteristics have been grouped to obtain a clear picture of what comprises the concept of patient participation.

The defining attributes of the concept of patient participation within the context of nursing practice are:

Developed Model Case

The development of a model case starts at the same time as the development of the list of defining attributes, (Walker & Avant, 1995). This model case is a constructed “real life” example of the use of the concept including all critical attributes. It serves to provide “evidence” of what the concept definitively is. This model case received careful consideration by testing it on thoughtful colleagues, as proposed by Walker and Avant.

The Model Case

The model case serves to provide evidence of what the concept of patient participation definitively is.

Jenny is a patient in an orthopedic ward. Since the first day, her primary nurse has regarded Jenny as an equal partner, activating her to participate in all aspects of her nursing care. The nurse starts in Jenny's frame of reference and uses open-ended questions to explore expectations, wishes, and opinions. They also discuss what they expect of each other. In their regular talks, they get to know each other and trust and respect develop. Jenny participates in planning, formulating goals, performing activities, and evaluation of her own nursing care. The nurse continually provides information and knowledge adjusted to Jenny's needs and Jenny, in turn, volunteers experiences, values, and beliefs. This generates informed choices and together they negotiate acceptable agreements. Jenny has reached understanding and a sense of control of her own situation.

Developed Additional Cases

Additional cases are constructed to help to decide what “counts” as a defining attribute of the concept and what does not. It enables identification of what is and what is not an incidence of the concept in question.

The Borderline Case

This is an example or instance that contains some of the critical attributes of patient participation, but which differs substantially in one of the criteria (Walker & Avant, 1995).

Borderline case of the concept of patient participation:

Klara is a patient in a rehabilitation ward with discharge to home imminent. Because of a temporary remaining disability, Klara will need homecare help daily. A discharge planning conference is scheduled and her primary nurse prepares Klara. They discuss Klara's need for help and questions to be asked. The conference starts with the nurse encouraging Klara to describe her wishes regarding anticipated needs. Klara uses her list of notes and starts with a description of her current health status and the nurse helps to fill in the blanks. Information regarding the resources the care system could offer is accurately presented by the coordinator for homecare in the municipality. Specific questions from Klara about, for example, how many and when homecare aids would come, receive unspecific answers. The nurse decides when Klara needs homecare without taking her wishes into account. Klara grows quiet and is subjected to pressure to accept. Finally, Klara accepts because the nurse appears to know what is best.

The Contrary Case

Walker and Avant (1995) claim that this case illustrates what the concept is not.

A contrary case of patient participation:

Adam is admitted to a surgical ward. Adam meets different nurses every day and gets no information or introduction. The first nurse Adam meets draws up the nursing care plan without consulting him. When performing physical care, the nurse does things only in her own way and excludes Adam. The nurse demonstrates that she knows what is best for Adam, offers no choices, and often makes decisions “over his head.”

Identified Antecedents and Consequences

According to Walker and Avant (1995), antecedents are events or incidents that must occur prior to the occurrence of the concept and are useful for identifying underlying assumptions. Consequences are those events or incidents that occur as a result of the occurrence of the concept and are useful for determining neglected ideas, variables, or relationships fruitful for new research directions.

Antecedents

Consequences

There is a dearth of empirical studies examining outcomes of patient participation in nursing care. The few reported consequences of patient participation are primarily described as improvements of some sort. Outcomes of patient participation have not been a specific research question; these consequences are, rather, mentioned as findings.

Empirical Referents

According to Walker and Avant (1995), the final step is to determine the empirical referents for the critical attributes. Empirical referents are discernible attributes of actual phenomena that, by their existence, demonstrate the occurrence of the concept itself. The few reported studies, which include observations, provide some referents. These studies involved participant observation at acute medical, surgical, and extended care wards (Henderson, 2002, 2003), a cardiovascular medical unit (Wellard et al., 2003), and a nurse-led clinic for chronic heart failure (Eldh et al., 2006).

  • • The nurse displays genuine interest and empathy for the person and spends time together with him or her so that they can get to know each other.
  • • The nurse encourages and supports the patient to take on responsibility and control by providing options to choose and decide.
  • • The nurse provides information and knowledge adjusted to the individual's needs and listens actively. The dialogue continues until an exchange of information is complete and where the patient volunteers information without being asked or is invited to do so by means of open questions.
  • • The nurse activates and supports the patient to cooperate, adjusted to his or her ability, during all physical activities as well as in planning, implementing, and evaluating the nursing care.

Conclusions

Based on the results from the present study, it may be possible to form a theoretical definition of the concept. Patient participation in nursing practice exists when all the identified attributes are present: an established relationship between nurse and patient, the surrendering of some power or control by the nurse, shared information and knowledge, and active engagement together in intellectual and/or physical activities.

The attributes of the concept of patient participation within the context of nursing practice have been identified and explored through a systematic analysis. More work is required to uncover further details of, for example, the interaction and the relationship in order to be able to stimulate and optimize patient participation. The meaning and nature of the concept of patient participation that has emerged here is only representative of the current state of the art. Concept analysis is a never-ending process and when further knowledge and experiences become available, additional development will be needed.

The use of concept analysis has aided in clarifying and elucidating the nature of the concept and has potentially formed a template for critiquing and challenging patient participation in nursing practice. The results may be useful for how implementation of patient participation is designed and evaluated. It may help to raise awareness of the complexity of patient participation and contribute to understanding the meaning by elucidating adjacent and necessary qualities, such as individual-centered care, nurse–patient continuity, and attending to the patient's self-image and experience of the situation.

When comparing the present results to Cahill's (1996) concept analysis of patient participation, the defining attributes are mainly the same, although more detailed. Surrendering power or control to the patient has a more prominent position. Shared information and knowledge adjusted to each patient's needs seem to be emphasized. Today, active engagement includes all phases of the nursing process in contrast to only some. The antecedents of patient participation appear to have been extended and refined, qualities of the relationship seem to have been illuminated to a greater degree. It is obvious that in the case of the nurse, recognition of the patient as equal and as having control and responsibility are required. A desire to relinquish a degree of power seems to be no longer sufficient.

Employing Walker and Avant's (1995) model and methodology promotes a systematic approach and, for the purpose of this analysis, it was successful in identifying and clarifying the concept. The construction of cases advocated in this methodology contributed to more specific and distinct descriptions as opposed to cases identified from data used in other approaches (cf. Rodgers, 1989; Schwarts-Barcott & Kim, 1993). Although the tool provided a useful guide, at times it seemed that information was being replicated only for the sake of conforming to the needs of the stages in the analysis. This is in line with comments by authors also following this approach (Cahill, 1996; Rodgers). The tool lacks distinct guidelines for certain aspects of the analysis, such as the need for a literature review and an explicit validation phase to verify the presence of the proposed defining attributes of the concept. Rodgers and Paley (1996), among others, criticize the methodology for presenting a rigid, static view of the world. However, Walker and Avant (1995) claim that “the end product is always tentative” (p. 37). They also assert that concepts change over time: what is true today is not true tomorrow. Accordingly, the results from this analysis should be considered as a starting point for further development.

Although the analysis was systematically performed, questions may be raised with respect to the representativeness of the literature chosen as data for this study. A more extensive inclusion of data might have been more elucidating in terms of the meaning of the concept of patient participation in nursing practice.

Contributions

Conception and design: MS

Data collection, analysis and interpretation: MS, IL

Drafting the article: MS, IL

Revising the article critically for important intellectual content: BS, KP

Acknowledgements.

We would like to thank the Department of Nursing, Health and Culture Vänersborg, University West Trollhättan, for its financial support.

Ancillary