Impact of an educational programme in Portuguese people with diabetes

Abstract

This study, conducted in the north of Portugal, is the result of a group of nurses’ intent to develop a closer and meaningful person-centered care for patients with diabetes, empowering them with skills to better manage their therapeutic regimen. Through a participatory action research process, the group of nurses involved in this study, reflected on the current healthcare enabling them an in-depth analysis of the best scientific evidence, aiming to design context tailored solutions, which would contribute to patients’ empowerment. Through a longitudinal study developed over several stages, the nurses outlined the educational programme Living in harmony with diabetes, which was applied to 85 patients with diabetes mellitus type 2. The programme had a positive impact on the psychosocial variables, in self-care behaviour and in the metabolic control, helping patients to better cope with their disease and have greater control over their health condition. Throughout the process of participatory action research, the nurses were able to increase their self-efficacy and empowerment on person-centered care implementation.

Keywords

Adherence action research diabetes educational programme empowerment nursing interventions participatory action research person-centered care self-management

Introduction

Several studies have evidenced that patient-centered care brings major contributions to the quality of care and health outcomes (National Ageing Research Institute, 2006; Starfield, 2011). This approach based on a partnership established between patient and healthcare professional implies mutual commitment: the professional recognizes the role that the patient has in the self-management of the health condition and respects individual values, goals, past experiences and needs; the patient recognizes the health professional valuable contribution, individual values, expertise, knowledge, and considers all information provided about treatment options (National Ageing Research Institute, 2006). Also according to Ekman et al. (2011), the term “patient” may be associated with a person's unresponsiveness towards self-care and therefore it is important to consider a ‘person-centered care’, since it emphasizes the need to pay attention to the person not the patient, i.e. to access the person who suffers from a disease (Ekman et al., 2011).

However, the current paradigm of healthcare is mainly focused on a curative perspective and on the biomedical model (primarily accessing the disease), and still not capable of effectively responding to this new challenge. The biomedical model is characterized by a hierarchical power relationship, where professionals are found to be the experts and patients act as passive individuals. Through the action research study conducted by Mendenhall and Doherty (2007), the authors were able to demonstrate the health professionals’ dislike for the biomedical approach.

This study was based on a participatory action research process, developed by a group of nurses engaged in transforming their practices, and aimed at proposing measures likely to contribute to both the patients and the professionals’ empowerment.

Evidence shows that the majority of studies based on action research are mainly focused on assessment through qualitative methods (Mendenhall & Doherty, 2007; Voigt, Hansen, Glindorf, Poulsen, & Willaing, 2014). However, in our study, we used a mixed methodology for the analysis and data processing of information collected throughout the process, with special emphasis on quantitative data extracted after the educational programme implementation.

In this article, the main researchers (academics) and co-researchers (nurses) set out to describe the process of search for solutions targeted at the empowerment of patients with diabetes and to the development of more meaningful care practices, both for patients and nurses.

What is known about this topic

Diabetes continues to increase at an alarming rate (International Diabetes Federation [IDF], 2011). When faced with the diagnosis of this disease and the complexity of its course of treatment, it is clear that every patient involved will be forced to mobilise and develop a series of skills in order to adapt to a new health condition (e.g. administration of hypoglycaemic agents, changes in diet and in physical activity, self-monitoring of blood glucose, foot care, and other self-care activities).

Education is crucial since it enables patients to manage their treatment and integrate potential changes into their life patterns (Schumacher & Meleis, 2010). The International Diabetes Federation acknowledges the relevance of education, considering it a fundamental component of healthcare which should be accessible to the entire population (IDF, 2011).

Educational programmes are an efficient intervention strategy, whose purpose is to enhance patient’s involvement in self-care, in order to empower them to manage their health condition. Based on different intervention models and covering different variables, the results from said programmes, in general, suggest improvements in terms of psychosocial (such as knowledge, illness representations, self-efficacy) and behavioural aspects (medication adherence, diet and exercise) as well as biological markers (Bayat et al., 2013; Molsted, Tribler, Poulson, & Snorgaard, 2012). However, programmes adopting empowerment as the underlying theoretical model and prioritising healthcare focused on the individual person seem to be the most effective (Molsted et al., 2012). The empowerment based approach recognises that patients are the ones controlling decisions regarding the management of their diabetes. The role of professionals as educators consists of helping patients to take informed decisions about the management of their diabetes. In these circumstances, nurses aim to create opportunities to encourage their patients to reflect on individual choices and the goals they wish to achieve (Anderson & Funnell, 2005). Thus, education on diabetes allows patients to develop skills to manage the various aspects of the therapeutic regimen (Direção Geral da Saúde, 2013). This learning process aims to improve the general health condition by empowering patients with the necessary knowledge and management skills, and to help them develop self-confidence, coping and problem-solving strategies in order to overcome barriers to self-care (American Association of Diabetes Educators, 2009). This problem-solving focus is also referred by Bodenheimer, Lorig, Holman, and Grumbach (2002) and Anderson and Funnell (2005), stressing that education is a process where teaching and counselling aim to help patients find strategies enabling them to achieve optimal well-being. By adopting the adult education models for diabetes, Anderson and Funnell (2005) suggest that, in the learning process, the facilitator takes into account the experience and expertise of the patients, based on their real problems and experiences, suggesting a model that supports the behavioural change (see Table 1). Thus, the educational programmes curricula should enable the enhancement of the individuals’ experiences. To guide patients to reflect on their experiences is a key step to enable patients to actually learn from these experiences. To encourage patients individually or included in groups, to reflect on how diabetes interferes in their daily lives, on their efforts to manage the disease and the results arising from this commitment will likely enable a change in perspective or an in-depth analysis about their goals and the best way to achieve them (Meleis, Sawyer, Im, Messias, & Schumacher, 2000).

Table 1.

Empowerment model. The five steps of behavioural change (adapted from the Five steps empowerment model, Anderson et al., 2009).

The five steps	Guiding questions
To identify the problem	How is it for you to live with diabetes? What is your biggest concern?
To explore feelings	How do you feel? What are your feelings in case things do not change?
To set goals	What do you want for yourself? What do you have to gain or lose if you change? Are you willing to do something to change this situation?
To design a plan	What steps do you have to take to achieve your goals? Have you got some ideas on strategies that might be effective?
To assess results	What have you learned while trying to pursue your goals? What can you do differently?

The problem and the perceived need for change

This study was developed by a group of nurses from primary healthcare focusing on their professional practices and aimed at enabling patients to better deal with their chronic disease. These nurses perceived that actual care, still highly focused in the curative and biomedical methods, did not effectively contributed to help patients to manage their health. Although the existing guidelines recommend a person-centered care, evidence shows that it is difficult to adopt this strategy and health professionals still feel many constraints in finding solutions to this problem. In Portugal, there are few scientific publications related to intervention programmes, and even fewer addressing action research approaches where professionals responsible for implementing the programmes are usually involved in their design. This can be a relevant aspect, since implementing programmes that are not adjusted to patients’ individual traits engaged in the therapeutic process in a specific context, can disclose weak outcomes, discouraging patients and disabling the health professionals from adopting these methods. The experience of researchers involved in this study showed that the lack of specific intervention programmes leads to some demotivation and creates barriers, since the existing programmes are often ineffective to professionals and patients, and frequently not culturally adapted. It is also evident that these programmes are often designed and implemented by researchers and tested in quasi-experimental studies, where the results are highlighted rather than the process itself.

Method

Thus, it was important to follow a methodology that enhanced a work path where these professionals (nurses), considered experts, could explore the main problems and set the core strategic proceedings, working to find an action-oriented solution, where everyone could relate and take responsibility.

In this research, the nurses played a role of co-researchers actively engaging in all process, reflecting a participative action research (Streubert & Carpenter, 2013). Based on the assumptions of Coutinho et al. (2009), this was an action research study, critical and emancipatory, actively intervening in the transformation of the system in search for responses to promote an improvement in action. The main researchers play the role of facilitators or moderators encouraging nurses to question and change practices. The focus given on social engagement will very likely potentiate change. Thus, aiming to empower participants to develop self-autonomy and actively engage in problem-solving (Streubert & Carpenter, 2013), the main researchers of the study worked together with a group of nurses, with the purpose of positively influence the world of practice (Dolbec, 2003). In fact, action research requires researchers and professionals to work together (Huang, 2010). As part of a certain context, professionals are able to learn about themselves, their practice and how can it be adapted (Streubert & Carpenter, 2013). On the other hand, knowledge validation is only achieved through action (Huang, 2010). Under the action research principles an emphasis was given on nurses’ perspectives in drawing solutions applicable to the working environments, since the most enduring changes are those established through participants’ involvement, their self-commitment and decision compliance. Therefore, this research set as a goal the participation in social transformation giving way to an emancipatory knowledge, meaning that through communication and reflexion processes people are able to better understand themselves and feel more empowered to deal with challenging situations.

The role of the researchers

For the purpose of this research, the nurses (co researchers) involved considered important to ask for the collaboration of three teachers (the main/academic researchers) from the Nursing School of Porto, thus enabling the engagement of all participants in this process. From the beginning of the study, as teachers (and main researchers) our role was to act as facilitators and mediators throughout the research, a process that was discussed and negotiated with nurses.

This approach is in line with the action research method, critical or emancipatory, which aims to facilitate the implementation of solutions promoting best practices (Coutinho et al., 2009).

As main researchers, there was no intention to present solutions merely to be executed by the nurses. The commitment was to explore and take professionals to assimilate the meaning and the purpose of changes, working together with nurses, contributing with knowledge and acting as mediators in the process, helping them to care practices and identify a set of possible solutions suitable to a real context, while sharing accountability for changes. Our work included different activities developed throughout the various stages of the action research process (diagnostic phase, action planning phase, implementation and assessment phase) (Table 2).

Table 2.

Study design.

Stages	Aims	Participants	Method
Diagnostic	To reflect on care practices	35 primary health care nurses	Thinking aloud
Diagnostic	To explore factors interfering in the management of the therapeutic regimen	15 patients with diabetes mellitus type 2	Semi-structured interview
Action planning	To design an intervention programme that responds to the identified needs	35 primary health care nurses; 7 teachers from the Nursing School of Porto.	Focus group
Action implementation. Action assessment and using and sharing results	To assess the impact of the educational programme on psychosocial variables, in self-care behaviours, quality of life and metabolic control; To assess the impact of the programme in nursing practice.	86 patients with diabetes participating in the programme in two healthcare units; 8 nurses fostering the programme.	Questionnaires applied before and after the patients’ programme; Thinking aloud; Monitoring of the sessions: Observation and field notes; Structured interview conducted with patients and nurses after the programme.

In the diagnostic phase, we fostered and mediated the nurses’ group work and also took field notes that helped to clarify problems and search for consensus and solutions. Since the nurses felt the need for more scientific support about the person-centered care model and factors influencing the adherence behaviours to the therapeutic regimen, we provided a 35-hour training on these aspects and on specific methodology. In addition to this early stage, we had conducted interviews with patients with diabetes, enabling them to disclose aspects related to the management of their disease. Interviews were submitted to content analysis and results were presented to the respective group of nurses.

Working together with the nurses’ group in the action planning phase, strategies and implementation processes were developed, based on practice contexts, constraints, but also considering the identified strengths. We were also responsible for presenting the programme to the experts’ panel and providing nurses with the experts’ opinions. These experts were also teachers from the Nursing School of Porto with considerable expertise in this area: they had been developing studies on adherence/management of the therapeutic regimen, had full knowledge and expertise on action research methodology and/or had an in-depth comprehension on processes involving change.

In the implementation and assessment phase of the programme, we attended some sessions and acted as observers. The nurses felt more confident by knowing main researchers were attending the sessions since they feared not being able to incorporate the empowerment model and continue adopting the same basic educational model. At the end of the sessions, we and the nurses met to reflect and discuss on improvements. Interviews with patients and nurses were carried out after the programme and the extracted quantitative and qualitative data were latter submitted to analysis. We presented the results to the nurses which then reflected on the intervention efficacy to solve the starting problem.

Study context

The entire research took place in the healthcare units in the district of Vila Real, north of Portugal, and the intervention programme was developed in two of those health centers, by the nurses working in the Community Care Units.

Procedures

The research project was formally submitted and latter given ethical approval by the Health Sub-Region of Vila Real.

Patients who complied with the inclusion criteria (aged over 18 years, diabetes mellitus type 2 diagnosed for more than a year and with no cognitive impairments interfering with the disease management) were invited to participate in the programme and after giving written informed consent, and before participating in the educational programme, were asked to complete a series of questionnaires. The programme comprised 48 women (55.8%) and 38 men (44. 2%), with an average age of 65.6 years old (Mn = 33; Mx = 75; SD = 7.31). Concerning the academic qualifications, this was a population with low schooling levels (M = 4.8 years; Mn = 0; Mx = 12; SD = 7.31).

One month after the end of the intervention, the same questionnaires were re-applied to the patients to enable a better understanding on the impact of the programme on the variables under study. By combining methodologies, between the period of 1–6 months after the last questionnaire assessment, an interview with a subsample of 21 patients was also conducted.

Data collection and analysis

The data collection and analysis was performed using quantitative and qualitative methods, considering related advantages and limitations. This complementarity is likely to enhance knowledge and/or the development of long-term solutions targeted at real contexts (Pais-Ribeiro, 2010). According to the objectives of the various stages, different qualitative techniques were used, such as the Thinking aloud technique, interviews, focus groups, observation and field notes. The interviews were conducted with patients and nurses with the purpose of interpreting their meanings and experiences. These interviews followed a guide and were tape-recorded and transcribed verbatim. As outlined by Strauss and Corbin (2008), the analysis of the semi-structured interviews was conducted using an open and an axial coding process in order to understand the relationship between the emerging categories.

The Thinking aloud technique consists of asking a person to think aloud while trying to find a solution to a problem or situation, thus providing researchers with the opportunity to access the cognitive processes involved. By using this technique, nurses and patients were able to reflect and discuss their experiences, unveiling the reasons behind their options and promoting self-awareness on the decision-making process. This means that nurses were able to reflect on their professional practices and patients were encouraged to think about the self-management of diabetes. The process allowed nurses and patients to focus not only on “what was done” but also on “why was it done”.

We also conducted a focus group with nurses and a group of experts. This technique enables to access different perspectives about a specific issue. Since all participants can report different experiences, influenced by a variety of factors, the results are expected to provide new ideas and valuable insights. With the first participants, the focus group was oriented to the design of the intervention model; with the second participants, the focus group addressed the programme validation.

For quantitative data collection and analysis, and to assess the effect of the educational programme on the psychosocial variables (knowledge, disease representations, perceived self-efficacy on the disease and social support) in self-care behaviours on diabetes, quality of life and the main clinical marker (glycated haemoglobin), the following instruments were applied before and after the programme: Knowledge of Diabetes Questionnaire (Sousa, McIntyre, Martins, & Silva, 2015); Brief illness perception questionnaire (Figueiras et al., 2010); The Diabetes Empowerment Scale-Short Form (Anderson, Fitzgerald, Gruppen, Funnell, & Oh, 2003) translated and adapted for this study; Scale of Diabetes Self-care Activities (Bastos, Severo, & Lopes, 2007); Quality of Life questionnaire (Ferreira & Santana, 2003; Silva, Pais-Ribeiro, Cardoso, & Ramos, 2004); and questions about Social Support. Theses scales were applied to each patient, making a descriptive analysis with absolute and relative frequencies values, dispersion and central tendency. The t test for paired samples was also used to analyse the before-after variation.

In order to ensure reliability, the results extracted from the questionnaires were triangulated through structured interviews conducted with 21 of these patients.

The longitudinal case

Throughout the action research phases (situation diagnosis, action planning, action implementation, action assessment and using and sharing results), several activities were developed relying on the nurses’ active engagement.

First step: Diagnostic phase

Initially, an exploratory study was carried out using the Thinking aloud technique, where 35 nurses, representing the several healthcare units in the district of Vila Real, reflected on what they do, why they do it and what do they intend to do.

Throughout the discussion involving the nurses, some ideas have emerged (Sousa, Martins, & Pereira, 2015):

– Understanding that the biomedical model influenced their practice, focusing mainly on the disease and its control;

– Identified difficulties in working with the patient with chronic disease, related with aspects inherent to patient’s characteristics, since they do not usually recognize the importance of diabetes, considering it a minor disease and underestimating related treatments;

– Recognition that organizational factors such as the reduced consultation time for patients’ appointments, hindered the opportunity to access their needs;

– Emphasis on the need to invest in a real teamwork, where different health professionals could discuss and work towards the same goals;

– Acknowledging the need for continuous training on aspects influencing adherence to the therapeutic regimen and the importance of working on new approaches;

– The need to give major importance to the transmission of information on diabetes and the need for them to extend their field of intervention, focusing also on patients and their adaptive process to the disease.

As a nurse stated: “I think that in diabetes, now it is not enough to just tell the patient what has to be done. The patient is our partner and needs to wish for change. The motivation has to come from him” (Field note with nurse).

Another nurse mentioned: “Sometimes it seems that we have to act as policemen, and see if they do or not what we tell them do to! I feel frustrated! I think this is not our role” (Field note with nurse).

Some nurses still based their opinions on the biomedical model, whilst others showed interest to adopt a person-centered care rather than on the disease, considering that nursing interventions should be tailored, multiple, comprehensive and targeted at the cognitive, behavioural and emotional dimensions. Some nurses expressed concern to adopt a less direct approach, especially in patients with low literacy levels, since they already relied on the health professionals’ guidance.

It was also clear that there was a difference between the professional’s activities that were developed with patients in daily practices, and interventions that nurses have learned from their training, which they believed to be ideal in supporting the patient with a chronic disease. These results reveal a gap between theory and practice, between current practices and desirable interventions, leading to feelings of professional frustration, as well as perceived “lack of control” over care.

What patients say

Although the nurses (co-researchers) were directly working with patients and were aware of their needs, we (main researchers) considered important to also focus on the patients’ perspective, since education on management of the disease condition must address patients’ problems and concerns. Hence, we have simultaneously conducted a qualitative exploratory study including semi-structured interviews with 15 patients diagnosed with diabetes mellitus type 2. To avoid potential patients’ constraints if the interviews were conducted by nurses, it was decided that we should lead this process.

From this sample, some categories have emerged, emphasising the psychosocial variables influence in self-care behaviours, such as beliefs or disease representations, knowledge, perceived self-efficacy and social support. These results indicate the need for professionals’ adaptation on interventions focusing on behavioural trends, which means understanding the reason why patients adopt or reject a given conduct. Some patients were found to have knowledge on the treatment of diabetes but were unable to integrate this knowledge into daily life, as expressed in this statement: “Nurses have already told me that I should eat several times a day but, you see, for a person working outdoors is not easy to carry meals” (Interview with patient).

Some of the patients gave no special concern to their disease: “I even forget I’ve diabetes. They don’t hurt (laugh). Sometimes I even forget to take medications…” (Interview with patient).

Through the interviews conducted with patients with diabetes it was possible to disclose their strengths, needs and constraints in managing the treatment regimen. Narratives of patients also showed a multifactorial influence in managing their diabetes. Realistic beliefs about diabetes, good knowledge, self-control, self-efficacy and perceived social support were also referred as facilitators of the disease management.

This diagnostic phase has enabled a continuous search for appropriate solutions to respond to patients’ needs, using the available resources, and resulted in the development of a culturally adapted educational programme.

Second step: Action planning phase

At this stage, and over 60 hours of work, the group of nurses established the key working strategies to respond to the presented problems and worked to find an action-oriented solution that these nurses could relate to and commit.

Grounded on empowerment as the theoretical referential, the main researchers and the nurses involved in this study outlined an educational programme oriented to the needs and expectations of patients identified in the previous phase, but also considered its feasibility and cultural context adaptation.

Prior to the implementation phase, the programme was submitted to the experts’ opinion, who presented several suggestions and showed some concerns related to some of the methodological aspects of the programme and the characteristics of professionals who could lead this programme. The first concern was the need for nurses to fully incorporate the theoretical referential underlying this programme. The nurses should be aligned with the empowerment philosophy and model, adopting related attitudes, beliefs and behaviours. A special concern was also given to the language used by professionals, since it would be expected that nurses would engage in usual dialogues with patients, telling them “what to do” and “what not to do”. Thus, experts suggested that the programme should be implemented by the nurses participating in its design, ensuring their full commitment to their own established guidelines. The second suggestion was related to the programme monitoring. This supervision could be done by main researchers responsible for the regular monitoring of sessions, not only to ensure that guidelines underlying this programme were followed, but also because, as “external” elements to the nursing team, we could act as observers and more easily identify aspects in need for adaptation and improvement.

The programme

The Living in Harmony with Diabetes programme, based on the empowerment philosophy, is a person-centered approach and was designed by co-researchers (nurses) and main researchers. It addresses a series of variables (such as knowledge, beliefs or disease representations, perceived self-efficacy, self-care behaviours and social support) extracted from the literature and based on patients’ needs, and includes the identification of opportunities for improvement of healthcare previously delivered in a diagnostic phase, which influence self-care behaviour. The programme included nine group sessions, taking place on a weekly basis, at healthcare units, with an average duration of 2 hours per session. Each intervention group was composed of 6–10 patients with diabetes. Only the patients who attended at least seven sessions were considered eligible for the programme's efficacy. The sessions were held at the community healthcare units where the study was conducted, by the resident nurses also involved in the study design. These nurses were interested in providing innovative, person-centered healthcare, and had previously attended awareness-raising sessions on the Empowerment Model (see Table 1), according to a study developed by Anderson and Funnell (2005) and Anderson et al. (2009). The nurses and patients were expected to lead these sessions. At the end of each session there was a discussion in order to decide what subjects should be addressed in the following session, since even if the programme comprised a set of contents, these could be changed according to the needs expressed by the group. Subsequently, professionals would meet to reflect on action, their self-perceptions, concerns and expectations.

Third step: Programme’s implementation and assessment

The programme was developed in two primary healthcare units located in the district of Vila Real, by eight nurses working in these units and also engaged in interventions prior to the design of this programme, and each intervention group consisted of 6–10 participants, totalling 86 patients, divided into nine groups.

Throughout the sessions, the nurses followed the empowerment model: they helped patients to identify their problems related to diabetes; they helped to explore feelings and how these could be influencing self-care; they led patients to reflect on the goals set for their lives and how diabetes could impact these same goals; they helped patients to outline specific goals for diabetes and the action plan which would better respond to their needs and also helped to assess this plan, reflecting on what patients have learned and what they would change for the future.

These thinking aloud reflections provided patients with the opportunity to talk about their experiences in managing diabetes, and created a unique sharing and learning environment. In fact, although these patients were not involved in the programme design and the nurses were responsible for planning the main contents to be addressed, following the empowerment model, the group's suggestions were still considered and contents and strategies were adapted according to the expressed needs. Thus, at the end of each session, patients were asked individually to suggested topics to be discussed in the following sessions. This process enabled to ensure patients’ motivation and active engagement.

At the end of this research, the nurses involved in this programme implementation were also interviewed.

Programme’s impact on patients

Through the mean values and statistics tests obtained using the selected instruments before and after the programme (see Table 3), patients were found to have better knowledge on diabetes. Similar results have been found by several researchers (McEwen, Baird, Pasvogel, & Gallegos, 2010; Molsted et al., 2012) after the implementation of educational programmes. Patients were also found to have changed their disease representations concerning diabetes, henceforth showing greater concern with the disease and at the same time, better understanding of diabetes and the belief that they had more personal control over it, suggesting that beliefs should be regarded when working with the patients (Bayat et al., 2013; Khunti et al., 2012). It should also be noted that although the average of these two dimensions has decreased, these lower values evidence better results, since items have been reversed. This patient’s statement shows how beliefs about the disease have changed: “Before the programme I didn’t know what could cause diabetes. (…) I never thought that diabetes could bring so many negative things, I was really mistaken! Now I give more importance to diabetes. Before, I was controlled by diabetes! Now I'm in control” (Interview with patient).

Table 3.

Knowledge of diabetes, dimensions of Representation of the disease and Empowerment, before and after the programme.

Variables	Before M (SD)	After M (SD)	t (p)
Knowledge of diabetes	0.79 (0.13)	0.90 (0.06)	0.74 (0.000)
Representation of the disease
Consequences	4.42 (3.56)	5.55 (2.81)	3.38 (0.001)
Duration	9.68 (1.40)	10.00 (0.00)	2.09 (0.04)
Personal control^a	3.25 (2.82)	2.65 (2.10)	2.17 (0.03)
Concern	5.68 (3.40)	6.34 (2.83)	1.97 (0.05)
Understanding^a	3.78 (3.25)	2.64 (2.14)	3.52 (0.001)
Empowerment	3.72 (0.61)	3.94 (0.46)	4.04 (0.0001)

Inverted items. Lowest values indicate most positive perception.

The quantitative data analysis also reveals a change in beliefs about the duration of diabetes and related consequences.

An improvement was observed in the perception of empowerment: patients found themselves believing more on their ability to set their own goals and overcome obstacles, as well as to mobilize strategies to manage stress and search for support enabling them to live better with diabetes (Table 3).

Some patients’ statements clearly illustrate these results: “(…) I can’t walk for a long time because I've diabetic foot. And so I walk from the fence to the gate, and from the gate to my entrance door. My family wanted me to go outside for a walk, but here I can walk on a straight floor and it doesn’t hurt my foot! I couldn’t walk on the street, now I exercise my own way.” (Interview with patient) and “I think that the most important thing in this programme was to learn how to control the diabetes!” (Interview with patient).

These statements reflect the patient’s ability to find strategies to deal with the disease, increasing perception of self-control over the health condition. This is an important indicator of the main difference found in informational programmes, which suggest strategies to deal with the disease. Thus, programmes that promote empowerment should focus on patients’ skills allowing them to deal with their disease condition and setting goals by establishing a feasible and targeted action plan (Anderson & Funnell, 2005; McGowan, 2011).

Concerning self-care behaviours, the averages found show that patients had more difficulty in adherence to physical activity and felt less constraints in the adherence to medication (see Table 4). These results are similar to those found by Sousa, Peixoto, and Martins (2008) (Table 4). A greater involvement was also revealed and therefore a higher significant statistical adherence to diabetes care, evidenced at the end of the programme, particularly in diet, physical activity and foot care.

Table 4.

Dimensions of Self-care, before and after the programme.

Self-care aspects	Before M (SD)	After M (SD)	t (p)
General diet	5.59 (1.73)	6.03 (1.19)	2.45 (0.017)
Specific diet	5.44 (1.05)	5.83 (0.89)	4.34 (0.000)
Physical activity	3.37 (2.49)	3.93 (2.47)	2.20 (0.031)
Monitoring of blood glucose	5.34 (2.49)	5.81 (1.92)	1.95 (0.055)
Foot care	5.75 (1.49)	6.40 (1.22)	3.63 (0.000)
Medication	6.94 (2.84)	6.88 (0.80)	0.66 (0.51)

One of the patients stated: “Yes, yes, I’ve changed my daily habits and I cook my own meals! (…) Before, when I felt hungry, I had nothing to eat and ended up by eating only bread, or anything else! (…) And since I've been on this programme I'm not lazy anymore! I feel completely different!” (Interview with patient).

No significant changes were found in adherence to glycaemic monitoring and medication, and concerning the social support and quality of life, the patients perceived some improvements, although not statistically significant.

As for glycated haemoglobin, considered as the main clinical marker because it reflects the average blood glucose levels over the past 90 days, a significant improvement was found after the programme (Before: M(SD) = 7.7(2.06); After: M(SD) = 7.3(1.40); t(56) = 2.39; p = 0.020), suggesting a better metabolic control.

Throughout the sessions, patients gathered more information on the disease and were increasingly more aware of the related consequences. Although they still experienced some fear and some of them referred to diabetes as their major concern, these patients also experienced greater self-control over the disease because now they were able to better deal with the condition: “Now I pay more attention to diabetes, but on the other hand, I'm less concerned! Because I know that things are more controlled! (…) now I think I'm more aware of certain things!” (Interview with patient).

Thus, patients were found to be engaged in treatment, developing adaptive strategies, and supported on their own resources they were able to better manage the disease, by enhancing their abilities to cope with the condition and helping integration of diabetes in daily life.

Impact of the programme on nursing practice

In the early stage of the action research process, the diagnostic phase, some of the nurses felt that their main responsibility was to teach patients on what to do, emphasising the biomedical model. Other professionals felt frustrated and some of them almost responsible when patients did not adhere to the therapeutic regimen, as expressed through one nurse’s statement: “I don’t understand! I think I did all that was possible for them to pay more attention to their diabetes but still they don’t change!” (Field note with nurse).

Nevertheless, and throughout this research there was evidence of a shift in this approach on care conception. Throughout the programme the nurses were faced with the need to adopt new attitudes. The withdrawing of the traditional role as experts has triggered a certain insecurity feeling. During the sessions, and in specific given moments, this uncertainty was felt by “not getting the job well done”. The nurses’ lack of perception of not being the main responsible for fostering sessions was explained by the role shift to patients. The “lack of control” did not refer to the abilities to manage the group but yet to the lack of typical interventions specifically disease-related, as stated in this example: “Before I was used to working in a different way, where the professional spoke, taught, explained and the patient just listened” (Interview with nurse).

To lead patients to reflect on their beliefs, objectives and experienced feelings, has been one of the greatest challenges and learning experiences to these professionals, as referred by a nurse: “The greatest benefit achieved through this programme is the empowerment given to the patient, since we can only reach good results if the patient feels motivated. The patient is the core of the consultation and we are “only” the leverage that enables improvement” (Interview with nurse).

Throughout the programme implementation, the nurses perceived the positive changes in the care practice, either in its design process or in the operationalization methods, focusing on a person-centered consultation. Another nurse stated: “What I’ve learned through this process? Mainly on how to deal with the patient! To work with him, being close to him/her” (Interview with nurse).

The nurses also recognized that if professionals are encouraged to reflect on care, it is possible to enhance healthcare adapted to the different services and to people’s contexts, without a significant increase on human and material resources.

At the end of the programme, the nurses experienced a greater professional satisfaction and changed perspectives about their role as carers of patients with chronic disease.

Conclusion

The nurses have perceived changes in their practice. Throughout this participatory action research process, they were able to build and incorporate knowledge, adapting to new mindsets, experiencing a growing self-efficacy feeling, control and self-regulation, deriving from a greater understanding and assimilation of the philosophy of empowerment.

In turn, this new way of caring is likely to have contributed to a greater psychosocial empowerment in patients, resulting in a greater capacity to set and achieve goals, by getting more involved in the management of the disease and feeling control over their health.

We believe that this study emphasizes the importance of the involvement and accountability of all persons participating in the therapeutic process, more specifically in this particular case, the nurses and patients. In reality, the educational programmes can be well planned and grounded on the best scientific evidence, but be poorly adapted to the professionals or patients personal characteristics. To replicate a certain programme, means that all involved are capable of identifying themselves with its objectives, contents and methodology. To carefully listen to “all the voices” will likely avoid constraints and help to anticipate potential obstacles and in addition will contribute for health professionals and patients self-reliance.

Despite PAR privileges a qualitative based-approach for data collection, it is also possible to use quantitative research methodologies. Since different goals were established throughout the process, we applied different approaches, as the focus group, interviews, the thinking aloud technique and questionnaires. The use of these various methods has allowed a clear comprehension of the phenomenon under study, emphasizing the usefulness of mixed methodologies.

Since this particular study was context-dependent, action-research based, this programme is not intended to be generalizable but rather transferable. The absence of a control group disables any interpretation of a cause/effect relationship. Although the results suggest greater involvement of the patients in their disease management process, the fact is that the assessment of the programme took place merely 1 month after its implementation, due to research time constraints. Researchers involved in this study suggest the need to develop new strategies for future research, to enable more prolonged and systematic follow-up by the professionals responsible for implementing the programmes. This will allow continuous monitoring or support to management, since this process is essential to successfully accomplish the intervention programmes aimed at patients with diabetes.

Despite these constraints, these study findings emphasize the importance of developing person-centered healthcare interventions and establishing partnership relationships encouraging nurses to help patients in decision-making and to commit to their care plans.

Footnotes

Acknowledgement

The author(s) would like to thank Dr. Svante Lifvergren or leading the review process of this article. Should you have comments/reactions you wish to share, please bring them to the interactive portion (Reader Responses column) of our website: .

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) received no financial support for the research, authorship, and/or publication of this article.

Author biographies

Maria Rui Sousa has a graduation in Nursing, a post graduate in Nursing Community, a Master degree on Health Education and a PhD in Nursing Science. She has developed research in the areas of self management, adherence to therapeutic regimen, diabetes and empowerment. She is a professor at the ESEP (Porto Nursing School) and a Researcher member of CINTESIS.

Filipe Pereira has a graduation in Nursing, has a Master degree on Nursing Sciences and a PhD in Nursing Sciences. He has developed research in the area of quality of care and Nursing Information Systems. He is a professor at ESEP (Porto Nursing School) and a researcher member of CIDESI, an International Council of Nursing – Accredited Centre for Information Systems Research and Development.

Teresa Martins has a graduation in Nursing, a post graduate and a Master degree on Public Health and a PhD in Psychology. She has developed research in the area of self care and has guided masters and doctoral thesis in this area. She is a professor at the ESEP (Porto Nursing School) and a researcher member of CINTESIS.

Isabel Rua has a graduation in Nursing, a post graduate in Nursing Rehabilitation. She is a nurse in Primary Health Care, in Vila Real District. She is a chief nurse and a coordinator of the Community Care Unit of Murça.

Ilda Ribeiro has a graduation in Nursing, a post graduate in Maternal Health and Obstetric Nursing. She is a nurse in Primary Health Care in Vila Real District. She is a chief nurse and a coordinator of the Community Care Unit of Chaves.

Catarina Cerdeira has a graduation in Nursing, a post graduate in Nursing Community, and a Master degree on Nursing Community. She is a nurse in Primary Health Care in Vila Real District, in Murça Health Care Center and in the Community Care Unit.

Laurinda Lopes has a graduation in Nursing, and a post graduate in Nursing Community. She was a nurse in the hospital area. She currently works in Primary Health Care, in the district of Vila Real, in the Health Center Care of Murça and in the Community Care Unit of Murça.

Clara Sèvegrand has a graduation in Nursing, a post graduate in Infant Child Health and Paediatric Nursing. She is a nurse in Primary Health Care, in Vila Real District, in the Community Care Unit of Chaves.

Carla Santos has a graduation in Nursing, a post graduate in Nursing Community. She is a nurse in Primary Health Care, in Vila Real District, in the Community Care Unit of Chaves.

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