Background

Patient participation is central in modern health care. Since the early 1960s, the patient's position in health care has been strengthened and gradually developed toward a more mutual patient–professional relationship, where both parties have a responsibility to take an interest or to act (Sahlsten et al., 2008; Thórarinsdóttir & Kristjánsson, 2014). The concept refers to the possibilities for patients to actively influence decision making about their care through an equal dialogue based on their own preferences combined with professional expertise (Castro et al., 2016). Patient participation is an important element in the patient–professional relationship; it has been highlighted in several theories and models (Chester et al., 2016; Ekman et al., 2011; Gruskin et al., 2007; Patel et al., 2008), and positive effects have been highlighted in research (Dwamena et al., 2012; Varming et al., 2015; Weingart et al., 2011). Because patient participation arguably plays an essential role in health care, it can be assumed that interventions to increase it are beneficial. However, as in all kinds of improvement work, it is important to know what to improve, how to do it, and when the desired results are achieved (Meyers et al., 2012). Management and staff could benefit in this process from methods for assessing perceived patient participation, and it is helpful to have reliable and valid measurement instruments (Kimberlin & Winterstein, 2008).

Forensic psychiatric care is a specialized field where the care involves treatment of patients with serious mental disorders who also have committed a crime (Nedopil et al., 2015). Compared with other forms of psychiatric care, the patients tend to show multiple disabilities, including antisocial behavior, poor insight, treatment adherence problems, and substance misuse (Gordon & Lindqvist, 2007). It is known that patient participation in forensic psychiatric care often is rated as low by both patients and professionals (Lundqvist et al., 2014; Lundqvist & Schröder, 2015; Selvin et al., 2019), and several aspects could explain this. The setting presents special challenges for professionals to establish and promote patient participation (Hörberg, 2008, Magnusson et al., 2020). They have to balance the paradoxical role of caring for the patients' interests and development, while simultaneously representing and adhering to the rules and regulations in the system in which they are employed (Söderberg et al., 2019). However, the complexity of the care and the severe disorders prevalent among the patients do not justify the exclusion of the patient perspective of participation in forensic care. On the contrary, the severity of psychiatric disorders together with long-lasting care times demand high-quality forensic care and the inclusion of the patient's perspective.

In addition to being challenging at a clinical level, patient participation is also a complex phenomenon, and what constitutes participation can vary depending on the context and theoretical perspective (Eldh et al., 2006; Jørgensen et al., 2018). In addition, there are a variety of factors such as staff and patients' attitudes, competence, environment, motivation, and health status, which directly or indirectly can affect patient participation and make the definition task even more complex (Sahlsten et al., 2008; Tobiano et al., 2015). Therefore, a specific definition of patient participation in forensic psychiatric care will contribute to the general knowledge of the concept, and it is recommended that instrument development be preceded by conceptual analysis, conceptual synthesis, or the derivation of concepts (Mishel, 1998).

Eldh et al. (2014) developed a tool for attempting to increase patients’ participation in care and to understand their preferences for participation—the 4Ps. The framework is based on patients' experiences, and it defines patient participation as having dialogue, partaking in planning, and managing self-care. The Patient Participation in Rehabilitation Questionnaire (Melin & Årestedt, 2020) and the Patient Participation Questionnaire (Berg et al., 2020) are other instruments developed for measuring patient participation. There are, however, to the authors' knowledge, no instruments that measure patient participation in forensic psychiatric care from the patient perspective. The instruments noted previously are concerned with participation in somatic care and are not necessarily directly transferable to forensic psychiatric care. Furthermore, even though the Quality in Psychiatric Care–Forensic Inpatient Instrument (Schröder et al., 2013) has a subscale with items relating to participation; it captures participation in a more general way. Therefore, the aim of this study was to develop an instrument that could be used to measure experiences of participation in forensic psychiatric care from a patient perspective and test it for content validity.

Methods

The study followed guidelines for instrument development as suggested by Devellis (2016). On the basis of these guidelines, this study was conducted in four main stages. The first stage was to formulate a definition of patient participation in forensic psychiatric care. The second stage was to operationalize the definition in an instrument and generate a pool of items. The third stage was to determine the format for measurement and to design the first version of the instrument. The fourth stage was to test the instrument for content validity with an expert group—in this case, patients in forensic psychiatric care.

Definition of Patient Participation in Forensic Psychiatric Care From a Patient Perspective

On the basis of previous descriptions of the concept of patient participation in forensic psychiatric care from a patient perspective (Selvin et al., 2016), the following definitions were formulated:

To have good communication: implies to be an active participant in communication about the care, which means dialogue and discussion, not only to receive information. The communication also needs to be adjusted based on the current mental health status and functional level of the patient. To be involved: implies to being able to affect one's own care by participating in planning and evaluation. To have mutual trust: refers to being confident and treated with respect by being listened to and seen as a person. To trust the care: means meeting professionals with high competence and that the care is relevant and adjusted depending on the situation. To take responsibility: refers to the patient's own engagement in the care, for example, to take part in activities, to take one's own initiative, and to follow prescriptions.

In the original study (Selvin et al., 2016), the category “Own responsibility” had two subcategories, “To participate in activities” and “To take the initiative.” In this definition, we decided to merge these into only one category because of the relatively fewer number of statements.

Operationalize the Definition in an Instrument and Generate a Pool of Items

The definition was operationalized in an instrument called Patient Participation in Forensic Psychiatric Care (PPFPC). The instrument was designed to measure the patient's own experience of participation in forensic psychiatric care.

To formulate an item pool, we used data from the previous phenomenographic interview study with 19 patients in forensic psychiatric care (Selvin et al., 2016). Statements from the results in that study formed the basis of the item pool, and we also went back to the original transcribed interviews to fully understand the context. On the basis of these data, items were derived, and it was important in this phase to keep the language in the items as close to that in the original interview statements as possible. The items were discussed in the research team several times regarding how well they captured the central ideas. Content as well as clarity has a significant bearing on item quality, in that each item should be unambiguous and easy to understand (Devellis, 2016). To achieve clarity, we considered factors such as reading difficulty level, number of words, and avoiding multiple negatives. We also decided to use only positively worded items to avoid misunderstandings, especially when considering that the patient group that is supposed to use the instrument might have cognitive disabilities.

During the process, we sorted all the items into dimensions and we used the same wordings as in the original categories. For example, an item formulated from a statement from the interviews belonging to the category “To be involved” was put in the dimension “To be involved” in the instrument. After consensus in the research group, we ended up with 50 items that we thought fully covered the subject and at the same time were a manageable amount to test for content validity.

Design and Format for the PPFPC Instrument

The instrument included a number of background questions, such as gender, age, and how long they had been treated in forensic psychiatric care. All items were related to the statement “I experience that…,” and a 5-point Likert scale from 1 = strongly disagree to 5 = strongly agree was used (see Figure 1). At the end of the instrument, there was an open question if the respondent had something more to add.

FIGURE 1:

Excerpts from the Patient Participation in Forensic Psychiatric Care instrument.

Testing PPFPC for Content Validity With Expert Groups

The instrument was evaluated for content validity by an expert group consisting of 16 patients having ongoing forensic psychiatric care.

Setting

Patients from two different forensic psychiatric clinics in Sweden were represented in the study. Both clinics had a medium security classification and were similar in size, each with around 25-bed sites and a staff of around 100. The patients treated at the clinics were admitted according to the Swedish Forensic Mental Care Act (1991:1129), which means that they had committed a crime that normally would have led to prison but, because of serious mental disorders, they were transferred to forensic psychiatric care. The most common diagnoses among the patients at the clinics were psychotic disorders, personality disorders, and substance misuse.

Recruitment

All patients in the forensic psychiatric clinics were informed about the study by a contact person at the clinic in collaboration with the first author. A poster and folders with written information were created and made available on the wards. All patients who were interested in participating in the study could sign up with the contact person. The only exclusion criteria were if the patient could not speak or read Swedish or were severely cognitively affected. In total, 16 patients wanted to participate in the study. They were all male, between 21 and 55 years old, and their current average treatment time was 26 months (9–54 months). Only men elected to participate in this study because there were no female patients treated at the wards during the data collection. The study was approved by the regional ethics committee in Uppsala (Reference Number 2019-05155), and all participants gave their written informed consent to participate before the start of the study.

Data Collection

The data collection was conducted in two steps. First, the patients filled in the PPFPC instrument individually at the wards. In this step, the patients answered the questions as if it had been a standard instrument and out of their own experiences as patients in forensic psychiatric care.

In the next step, they evaluated the PPFPC and discussed the instrument. The patients were divided into four groups and attended one meeting each that took around 90–120 minutes. The first author led these meetings, and the third author took notes during the discussions. Large rooms were used, which allowed us to comply with restrictions regarding the COVID-19 situation we had at this time (summer 2020). Each group session started with the patients filling in an adjusted version of the instrument (see Figure 2), where they rated the items according to relevance and comprehensibility. The relevance of each item was rated on a 4-point Likert-type scale: 1 = not relevant, 2 = somewhat relevant, 3 = quite relevant, and 4 = very relevant. The comprehensibility was assessed on a 3-point Likert-type scale: 1 = hard to understand and unclear, 2 = acceptable, or 3 = easy to understand and clear. Several patients needed clarifications of the concepts, which were given by the researchers, thus indicating the need for clarification of the questionnaire. When the patients had finished the rating, a group discussion led by the first author took place, guided by the following questions:

FIGURE 2:

Excerpts from the evaluation protocol of the Patient Participation in Forensic Psychiatric Care instrument.

What is your general impression of the questionnaire? What do you think of its structure (number of questions, time to fill in, etc.)? Do you have anything to add that we did not think about when we constructed the instrument? What do you think about the instrument's usability in forensic psychiatric care? Data Analysis

The data from the first step of the data collection were analyzed to give the mean values for each item and for each dimension. The data from the evaluation of PPFPC were analyzed using the content validity index for items (I-CVI) and the average of all the I-CVIs on the overall scale (S-CVI/Ave). To calculate I-CVI, the number of experts who rated an item as quite relevant (3) or very relevant (4) was divided by the total number of experts. Thus, if 14 of 16 experts rated an item as “quite relevant” or “very relevant,” the I-CVI is 14/16 = 0.875. To calculate the S-CVI/Ave, the sum of all I-CVIs was divided by the total number of items. It is recommended that for a scale to be judged as having excellent content validity, it should be composed of items with a minimum I-CVI of 0.78 and it should have an S-CVI/Ave of 0.90 or higher (Polit & Beck, 2006). Cronbach's alpha was used to assess the internal consistency of the scale, and coefficients higher than 0.7 were considered acceptable (Nunnally & Bernstein, 1994). We investigated the instrument for possible ceiling and floor effects. Because of the specific and limited selection of patients, we considered a floor or ceiling effect if more than half of them scored a 1 (floor effect) or 5 (ceiling effect) on the PPFPC.

Results

The results are presented in the following order: First, the data from the patients' experiences of participation and, second, the evaluation of the instrument. Finally, there is a summary of the group discussions.

Patients' Experiences of Participation in Forensic Psychiatric Care

The mean scores for each dimension are presented in Table 1. The To take responsibility dimension had the highest mean score (4.20), followed by To have mutual trust (3.82), To have good communication (3.78), To trust the care (3.60), and To be involved (3.49).

TABLE 1 - CVI (I-CVI and S-CVI/Ave), Comprehensibility, Mean Score, Percentage of Lowest Sore (1) and Highest Score (5), Floor and Ceiling Effects, and Cronbach's Alpha of the Evaluation of the PPFPC Instrument Dimension Item No. Item I-CVI Comp Mean Score 1 (%) Score 5 (%) α Full questionnaire 0.86 0.97 To have good communication (10 items) 3.78 0.85 1 The information I get about my care is clear. 0.93 0.93 3.06 19 19 6 The staff adapt their way of communicating according to my needs. 0.81 0.75 3.76 6 38 11 I get sufficient information about my care from the staff. 0.87 1.00 3.41 13 25 16 I know about the planning of my care. 0.94 0.88 3.94 6 44 21 I get information about my care in time. 0.87 0.80 3.24 13 25 26 I know the reasons for the decisions made about my care. 0.75 0.88 3.47 13 31 31 I understand why I'm being cared for within forensic psychiatry. 0.81 0.94 4.35 6 81 36 I am aware of the section's routines. 0.81 0.88 4.47 0 75 41 I understand the rules of the section. 0.88 0.88 4.35 6 81 46 I am aware of my rights. 0.88 0.81 3.71 13 44 To be involved (10 items) 3.49 0.88 2 I can influence the nature of my care. 0.87 0.93 3.29 6 19 7 I have regular dialogue with the staff about my care. 0.88 0.88 3.41 13 19 12 I have the possibility to choose between different treatment alternatives. 0.67 0.87 3.00 25 13 17 I can influence decisions about my care as much as I choose. 0.75 0.94 3.47 19 31 22 I regularly take part in meetings where my care is planned. 0.80 0.73 3.71 19 56 27 Things I put forward about my care have meaning. 0.94 0.81 3.76 19 44 32 Staff ask for my opinions when my care is being planned. 0.81 0.81 4.06 13 44 37 I am able to get across my opinion before meetings when I am not able to be present. 0.75 0.88 3.24 25 31 42 I get the information I need after the meetings when I have not been present. 0.81 0.81 3.18 25 25 47 The decisions taken about my care are good for me. 0.88 0.88 3.76 19 50 To have mutual trust (nine items) 3.82 0.95 3 The staff listen to me. 0.87 0.93 4.18 0 44 8 The staff take me seriously as a person. 0.81 0.88 4.18 13 69 13 I am respected by the staff even if we are not in agreement. 0.87 1.00 3.88 6 44 18 The staff are perceptive to how I am feeling. 0.94 0.88 3.71 19 44 23 The staff are committed to my care. 0.93 0.87 3.71 13 44 28 The staff encourage me to move forward in relation to my care. 0.88 0.88 3.59 13 38 33 The staff help me to take the initiative when I myself cannot manage it. 0.63 0.94 3.06 19 13 38 The staff treat me fairly. 0.88 0.81 4.12 13 63 43 The staff don't judge me. 0.88 0.81 4.00 6 50 To trust the care (11 items) 3.60 0.89 4 I have confidence in the care given. 1.00 1.00 3.24 19 19 9 The treatments on offer are right for me. 0.94 0.88 3.59 13 38 14 My care and treatment prepare me for my discharge. 0.93 0.87 3.88 25 50 19 The staff I have contact with are competent. 0.88 0.88 3.59 13 38 24 The care contributes to my psychological health becoming better and better. 1.00 0.87 3.88 13 50 29 The care contributes to my physical health becoming better and better. 0.81 0.81 3.71 19 44 34 The staff trust me. 0.81 0.88 3.59 13 38 39 I feel hopeful about the future. 1.00 0.88 3.59 19 44 44 The things the staff and I agree upon actually happen. 0.73 0.73 3.88 6 38 48 I have confidence in the legal procedures. 0.63 0.81 3.18 19 19 49 I have confidence in my lawyer. 0.88 0.81 3.53 25 44 Own responsibility (10 items) 4.20 0.78 5 I stick to what we have agreed on in my care plan. 0.93 1.00 4.35 6 69 10 I follow the directions for my medicine prescriptions. 0.88 0.88 4.82 0 94 15 I stick to the treatments which don't involve medicines (talking therapy, social training etc.). 1.00 0.93 4.06 13 63 20 I take part in any activities offered. 0.94 0.94 3.88 13 50 25 I stick to the rules in place in the section. 0.93 0.80 4.59 0 75 30 I participate in my own care. 0.94 0.88 4.41 6 63 35 I do whatever is needed for me to be discharged. 0.94 0.88 4.71 0 88 40 I take personal responsibility for my care. 0.94 0.88 4.35 6 63 45 I personally make suggestions for aspects of my care. 0.87 0.87 3.59