Experiencing Participation in Health Care: “Through the Eyes of Older Adults” ()
Received 2 December 2015; accepted 26 January 2016; published 29 January 2016
1. Introduction
Although patient participation is a complex and broad concept, it is common and used on a daily basis in health care by health care professionals. Patient participation is defined as “patient involvement in the decision-making process in matters pertaining to health,” in the National Library of Medicine’s Medical Subject Headings, [MeSH] [1] .
The Swedish National Board of Health and Welfare [4] emphasizes the importance of the interaction between the caregiver and the patient. Moreover, it has declared that during the interaction, specific health-care needs are identified and this provides better outcomes for the patient [4] [5] .
A study done in Sweden showed that, according to the patients, patient participation was about having knowledge and interacting with health care professionals [6] . This study confirms that patient participation is important for the patient and for the quality and outcome of care. The findings are also consistent with new Swedish legislation the “Patient Act,” which emphasizes patient involvement and the patient’s right to participate in all decisions [7] . The background to and the intention of the law are a shift of power to the patient [8] .
Patient participation is a well-researched concept. Several studies focus on adults as a general group and/or focus on patient participation in different contexts [9] -[11] .
This crucial need to describe participation in health care from the older adult’s perspective comes to be aware of the aging population globally. In the Western world, the number of people reaching an old age is rising and it is estimated that soon the older population will outnumber the younger population [16] . By 2050, 22% of the world population will be older adults [17] . Sweden has one of the highest proportions of older adults in the world, especially in the group of 80 and over. Due to better living conditions, life expectancy will increase [18] .
Because health care professionals will meet this group of patients in all contexts where health care is provided, it is important to explore and describe patient participation according to the older adult. Understanding the older adults’ can enhance and promote the caring conversation that nurses and other health care professionals conduct. A first step in filling the gap is to review the literature and discover the scope out of what constitutes patient participation from the view of the older adult.
Thus, the aim of this study was to review the literature on what constitutes participation from the perspective of the older adult in the encounter in a health care setting.
2. Material and Methods
An integrative review approach was undertaken with the guiding question, “what constitutes patient participation according to the older adult?” The choice of method was in order to define the concept further and to have the possibility of combining different data from quantitative studies as well as qualitative studies.
Integrative reviews are the broadest type of research review methods that allow for combining data from the theoretical and empirical literature. Moreover, integrated reviews incorporate defining concepts [19] . This study used the methodology of Whittemore and Knafl during the whole process, including problem identification stage, literature search stage, data evaluation stage, and data analysis stage. Problem identification has been thoroughly described in the above section, which explained the lack of knowledge and importance of conducting this review.
2.1. Literature Search Stage
Concepts closely related to participatory care were used in the search process to see whether they had corresponding terms or explanations on the MeSH-tree. Related concepts were chosen in consultation with two experienced researchers in the field of concept development/concept analysis. Among the concepts were “participatory medicine”, “participatory care”, “interdependence”, “collaborative care”, “cooperative care” and “patient participation” (in PsychINFO “client participation”). Only patient participation had an explanation as a MeSH- term: “patient involvement in the decision-making process in matters pertaining to health.” Although the other concepts did not have any explanation, they were used in rest of the search to capture the core of the concept. Three electronic databases were used to conduct the review: PubMed®, CINAHL and PsycINFO. All the searches were limited to January 2003 to December 2014 to capture the most recent research, to the English language to receive articles written only in English, and to +65 years of age to obtain articles involving older adults. In PubMed and CINAHL, the search word “patient participation” resulted in too many search results so the search range was reduced to six years, thus January 2008 to December 2014. Inclusion criteria were: according to the older adult, cognitively intact older adults, and studies conducted in Western countries. Exclusion criteria were studies about co-operation/participation between professions. When duplicates were removed, a total of 15 articles were included in the review because they met the aim of the study (see Figures 1(a)-(c)). Lastly, a control search was conducted and one more article was found, for a total of 16 articles.
2.2. Data Evaluation Stage
The study included all the articles that were peer-reviewed and focused on experiences/perceptions on patient participation from the perspective of the older adult. The final sample was a total of 16 articles; both empirical and theoretical articles were included to gain a broader description on what constitutes patient participation according to the older adult. At this stage, a matrix was created in order to sort out data that corresponded to the aim (see Table 1).
2.3. Data Analysis Stage
Inductive content analysis with open coding was used to analyze the data retrieved [20] . The primary research methods of analysis, which were developed for qualitative design, are applicable to the integrative review method [19] . Inductive content analysis with open coding took five steps: first the data was obtained, (e.g. the literature that corresponded to the aim was read through and notes were written in the text while reading). Then the data was read through again and as many headings as possible were written in the margins to describe all aspects of the content. The headings were then moved onto coding sheets and categories were freely generated, which created subcategories. Further, the categories were grouped under higher order headings, which in turn provided the categories. The categories then resulted in four main themes (see Tables 2(a)-(c)).
3. Results
The studies in this review include reports, reviews and empirical papers. A summary of 16 articles addressed the main aim of the review and formed the base findings. Four main themes emerged from the literature: a two-way communication, being on equal terms, being given time and being in the right place (see Tables 2(a)-(c)).
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Figure 1. (a) Overview of the research strategy and process in PubMed; (b) Overview of the research strategy and process in Cinahl; (c) Overview of the research strategy and process in PsycINFO.
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Table 2. (a) Subcategories and categories for the main theme: A two-way communication; (b) Subcategories and categories for the main theme: being on equal terms; (c) Subcategories and categories for the main theme: being in the right place and Being given time.
3.1. A Two-Way Communication
According to the older adults, communication between the older adults and health care professionals was a central element in experiencing participation in care [21] - [25] . In discussing communication, they did not focus only on speaking with each other, although that was seen as important, but also on connection on several levels. The older adults talked about the ability and possibility to influence their care, meaning that they wanted to take an active part in the planning of different examinations and treatments and have a say in medical decisions concerning their care [22] [24] . Others wanted information but did not want to take an active part in medical decision making. They mean that the hospital could make the decisions on behalf of them because the hospital made the right decisions [22] .
Being heard by health care professionals was a significant and self-evident factor of participation and differed from being listened to. According to the older adults, being heard was not seen as a requirement but they wished to be given the chance to be heard [22] [23] . which represented good communication [22] .
Participating in their own care was mentioned in terms of negotiating their way to participation [25] . Participation was experienced as something that lies under the surface of what is said and done. It was seen as something indirect and subtle, not as a right but as an opportunity that has to be taken to achieve participation [23] [25] , where participation could change over time and become a dynamic process [25] .
Opportunity for participating in their care was seen as something that was given by health care professionals and taken by the older adults. A direct and verbal communication between the older adults and health care professionals was perceived as a central factor in experiencing participation. For the older adult it was crucial to receive information about an illness and planned investigations and to have the possibility of expressing feelings about symptoms and illnesses [22] [26] . Some patients found it so crucial that they made their own efforts to get information [26] and others do even more struggling for shared decision-making [27] . According to the older adults, it was also important that the health care professionals explain what is going on [21] [22] regarding treatment [28] , were they want to have a well-informed decision making [28] .
3.2. Being on Equal Terms
Being on equal terms in decisions regarding health was something that emerged and thus seen as a salient dimension for experiencing participation in health care [21] [24] [25] [29] - [35] . To be treated with an open and friendly attitude, to be seen and cared about, as a unique and individual human being was perceived as valuable for participation [34] [35] . It was seen as important to be asked questions by health care professionals and that the health care staff identify values and beliefs of the older adult [25] [29] [36] where the voice of the older person needs to be given space [35] .
Older woman wanted to participate in clinical decision making about their chemotherapy treatment. However, a majority wanted to share the decision with their clinician where his or her recommendation was important for their decision were they could accept or reject chemotherapy. Only18.9 % made their own decision [26] .
Being able to participate was described in terms of shared power between the older adult and the health care professionals. Sharing power meant similar status and equality in influencing the health care plan, both during hospitalization and when being discharged [24] [25] [30] . It meant being partners with shared responsibility in the decision-making process. Shared decision making was not described as about the amount of “sharedness” but as a stepwise process taken together [36] , without hierarchy [25] .
The older adults took an active role in own health; they asked questions about anything they wanted to know and were also able to assert their own beliefs and values [26] . Others involved their family members when they made decisions regarding receiving chemotherapy [28] . Respecting the role that an older adult adoptsis to respond to her or him as an individual [36] .
To have the possibility of choices and to be able to make them was a pressing issue for the older adults in experiencing participation [26] [29] [31] [32] . In situations such as if and when to relocate to a nursing home, having treatments during clinical encounter and if technology was to be used, the older adults wished to be involved in the decision making [29] [31] [32] .
To be able to make the choice of not wanting to participate in decisions regarding health care was also a way of feeling involved [29] [36] . Experiences of participation could also be obtained by being respected by the health care professionals [21] and the professionals respecting the older adults’ integrity [34] .
Trust was a basic concept that concerned many people around the older adults, including physician, nurses and relatives. To trust your physician, to involve the ones you trust in the care agenda and to have a trusting relationship with nurses and/or nurses’ aides were all key points in the pursuit of experiencing participation [21] [29] [33] .
3.3. Being in the Right Place
According to the older adults, being in the right place, for example, on the right hospital ward when receiving care, generated experiences of being involved and resulted in feelings of participation. Participation is consequently dependent on context, environmental conditions and organization. Contributing factors for experiencing participation were dependent on practice and also health care organization [21] .
External factors such as environment and context were of importance and also seen as a condition to experiencing participation [27] . Contextual factors concerned both external and internal factors that were derived from the older adult’s own context. The older adults found it significant to explore how a decision could affect the context of the life of the older adult [33] .
3.4. Being Given Enough Time
The older adults saw time as an important aspect and a contributing factor for experiencing participation [22] [24] [25] .
Time was a pressing issue and the older adults emphasized it when they were addressing the concept of time. The presence of time was so important that the absence of it could enable feelings of alienations with the health care staff. The feeling of being involved or alienated could depend on the pace in the ward, according to the older adults [23] . The older adults also approached this issue by saying that the health care professionals needed to take the time and sit down with the older adults and talk [22] . The time allocated was also seen as important for participation, not meaning how much time the older adults should be given, but having enough time [21] .
4. Discussion
4.1. Discussion of the Methodology
The aim of this review was to describe what constitutes participation in a health care setting from the perspective of the older adult, by looking at current research. We have achieved this even though one article was a review of models of participation.
The integrative approach proved the possibility of retrieving a comprehensive understanding of the concept of interest [19] . The review has contributed to a broader and more comprehensive understanding of the concept of participation in a health care setting. The authors sought to be systematic and rigorous, and the integrative review approach emphasized the importance of these two qualities [19] .
With the methodology chosen, this review obtained findings that could be applicable for nurses working in health care settings when caring for older adults. To deepen the understanding of the concept and really frame it, a mixed method approach could have been applied. According to Whittemore and Knafl [19] , using a mixed method technique provides the possibility of reducing errors and thus helping to deepen and capture the concept of interest [19] . One way to further deepen the concept and receive confirmation of the findings would be to conduct qualitative interviews with older adults in different health care settings. Whittemore and Knafl confirm that qualitative research also gives less room for errors and more room for confirmation of the findings [19] .
The findings of this review were obtained because certain and only a few key search terms were used when conducting the search in the databases. There is a possibility that using more key search terms would have resulted in more suitable and relevant articles to frame the concept of interest. Several articles had to be excluded because the studies contained more age groups than those +65 years of age and it was impossible to distinguish statements from those +65 years of age.
This review reveals the importance of really focusing on the older adult and what is important for them in experiencing participation, putting aside age, sex and health status. Other articles and papers have clearly shown what is important for the older adult when it comes to participation and focused on the older adult and what they value [4] [15] but they have not really asked the older adults what it takes to experience participation.
4.2. Discussion of the Findings
According to the older adult in the current study, participation comprises a two-way communication, being on equal terms, finding the time and being in the right place. Health care professional should initiate communication, equality, giving enough time and to make sure that the older adult is in the right place for participation to take place, in order for the older adult to experience participation.
Through the eyes of the older adults communication should be initiated by the health care professional, as it was needed in order to perceive participation. The communication was about the information being given and about indirect communication, meaning the ability to influence one’s care and to be given the possibility of being heard. This indicates that if the two-way communication does not work, feelings of participation will be lost and this may lead to a person being displeased with the health care. This was clearly confirmed in a study conducted in 1999, showing that information given in simple ways can provide satisfaction with care [37] . However it can also be perceived as power aspect and questions can arise of why the information should be provided in a simple way to grown up adults with long life experience. There may be a power structure at play, so-called ageism, where the staff sees the elderly as a group who are weak, not having knowledge and/or are frail [38] [39] . For example, it has been stated that older adults are not informed of health-care staff because the information can be seen as meaningless to frail older adults [38] . Further, this tells us how crucial it is that health care professionals give information to the older adults.
The importance of giving information because, as seen in this review, older adults do not see it just as being given information but as something that makes them feel involved in their care and thus satisfied with it. According to the older adults, it was also important that the health care professionals explain what was going on [21] [22] .
Although the findings of this review suggest that communication is important in all contexts, it is of value to have the individual in mind, meaning that different levels of communication can be of different importance for older adults. This review presents the results from a group perspective, but it is still valuable to consider the older adult’s subjective view in order to increase experiences of participation and thus satisfaction with care. Participants in a study conducted in Canada had various opinions about being part of decision making: some were comfortable with just being heard out and others wished to have a real influence [40] . However, it is not always enough to hear out (listen to) the older adults. Older adults can try to avoid conflicts by complying, which can be interpreted as the older adults not wanting to make decisions [26] .
Equality and sharing power between older adults and health care staff in the health-care setting was perceived as a precondition for experiencing participation. “Respect,” “integrity” and “similar status” were the terms used by the older adults when talking about feelings of participation [21] [34] .
These terms revealed that the older adult wished to take part, be involved in the care, but it was the staff providing for the care that needed to involve the older adults and invite them to participate. This exposes the fact that just wanting to participate did not result in participation but there was a need for interaction to co-create participation. This is confirmed in research indicating that participation is about social interaction [41] and something that is determined by patients and health care professionals together through communication and shared decision making [42] . However, there is a question of whether it is enough to have shared decision making in all situations and contexts. The Swedish law state that the patient should have participation and that the power of the care should be shifted to the patient [7] . In addition, regardless if the patient is living in an ordinary housing or a nursing home, it is the older adults’ home, and in your own home you want to decide for your- selves.
In this review, time was considered an essential issue, implying that older adults wished to have enough time from health care professionals in order to experience participation. Taking it a step further, time was also something that had to be given by health care professionals so the older adult could experience participation. It is important to mention that in-patients may have difficulties experiencing participation because of the hospital pace and of not having enough time with health care staff.
In one study, nurses working in hospitals needed strategies such as routinization and prioritizing to manage time [43] . Time is of the essence in a hospital ward, therefore it is preferable if the older adults are informed by health care personnel regarding the time aspect if it affects the care of the older adults. Giving information to the older adults may increase feelings of participation if the older adults know about the time aspect. According to the same study there is a reliance on patients in supporting nurses’ effort to manage their time [43] . However, we mean this perspective can be harmful. Older adults can adapt to the staffs lack of time and give up their own participation and needs and by that the staff regain control over time which can result in an institutions-centered care instead of person-centered care [44] .
In order to experience participation, older adults have to be in the right context and surrounded by the appropriate environment. As a result the emphasize is on the health care staff making older adults feel that they are in the correct place and thus contributing to the older adult’s experience of participation. This means that if and how much a patient wishes to participate depends on the context and the patient’s relationships with the health care professionals [40] . This is also confirmed by another study that emphasizes the importance of the relationship with the health care staff [45] . This can be tied together with the fact that being able to experience participation due to context is something that has to be provided by the health care staff.
Altogether, the main findings revealed that for older adults to be able to experience participation, factors like communication, equality, being given enough time and being in the right place were in order. But more important, the older adult revealed that for them to experience participation the health care professionals are the key and thus can make it happen by initiating the factors above. One way to initiating it is trough person-centered care. An approach means that it is the older adults’ perspective that is prevailing in the performance of care and the decision making process not the organization’s procedures or the professional’s routines [46] . It’s a part of the profession to create a relationship so that the older adults’ perspective can be adopted [47] . Further there is a need of engagement and commitment in the relationship, it is namely in the interpersonal relationship that health care professionals become aware of the older adults beliefs and values [47] . These beliefs and values will become controlling for participation. The right to participate is also stated by the law and the guidelines for health care in Sweden. Experiencing participation when receiving care will lead to increased quality of care and in turn help the older adult attain optimal functionality [48] . In this integrative review it came out that it was important for the older adult to feel important enough to be given time, to be asked questions, to be seen as an equal, to be informed and to be in the right environment. The perception of being important can lead to experiences of subjective health and in turn experiences of optimal functionality. The older adults emphasized the importance of being seen as a human being, building trusting relationships with health care professionals, indicating that the older adults wished for quality in the encounter with health care. One way to receive quality may be through the experience of participation since it includes factors for experiences of quality in care.
5. Conclusions
According to the older adults in this study, to feel participation the need or wish to participate is not enough; the health care professionals need to initiate and invite the older adult into a relationship, on equal terms where participation is created. It should create a two-way communication, give the older adult enough time and take the responsibility to make the older adults feel that they are in the right place. Thus, a person-centered nursing approach is relevant for the health care professional in order to both give and maintain the experience of participation for the older adult. By that, the health care professional can understand participation through the older adults’ eyes (see Figure 2),
The elements which are shown in Figure 2 show a future and clinical implication and a tangible and concrete concept that might be used as a framework in nursing care.
Contributions
Study design: SA, IJ, AK; data collection: SA; data analysis: SA, IJ, AK and manuscript preparation: SA, IJ, AK.
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Figure 2. The important elements that the health care professional need to see and understand participation through the older adult’s eyes.
Conflict of Interest
No conflict of interest has been declared by the authors.