Patients'Perceptions of Having a Good Life One Year After Arthritis Patient Education: a Qualitative Study Nested Within a Randomized Controlled Trial

Background: Patients with inflammatory polyarthritis have various degrees of disease-related challenges such as joint pain, stiffness, fatigue, and physical limitations. Despite these challenges, patients strive for a good life using their personal resources, often taught in patient education. The effect of patient education in polyarthritis is well studied; however, long-term studies on what patients perceive as a good life after participating in arthritis patient education are scarce.Purpose: The aim of this study was to explore patients' perceptions of having a good life one year after attending a nurse-led patient education intervention.Methods: This was a qualitative study nested within a randomized controlled trial (RCT) studying the effect of nurse-led patient education. Fifteen individual semi-structured interviews were conducted among those who attended the nurse-led patient education intervention. The intervention focused on the consequences of living with chronic inflammatory arthritis. The interviews explored how and whether the intervention had made any changes in the informants perceived health, well-being, arthritis, flares, and treatment regimes. The data were analyzed thematically using systematic text condensation.Results: The findings showed that the informants' perceptions of having a good life were related to a stable disease with few symptoms, effective treatment regimes, discovering new opportunities and perspectives in life, as well as making choices that felt right. Creating a good life was something the informants had acquired knowledge about in the nurse-led patient education intervention, particularly in the part where they had discussed and shared experiences with each other on how they managed their arthritis in different ways and settings.Conclusion: Participating in a nurse-led patient education intervention in arthritis helped the informants to discover new opportunities and perspectives on creating a good life, especially through exchanging experiences with fellow patients.


Informants
The informants (n=15) were recruited among the participants included in the RCT (Grønning et al., 2013). The inclusion criteria for the qualitative study were the same as for the RCT. The informants had a chronic inflammatory joint disease (RA, PsA or unspecified polyarthritis (UA)), were between 18 to 80 years old, and were able to participate in the nurse-led PE intervention. The informants had been interviewed previously; before they attended the nurse-led PE intervention (Grønning, Lomundal, Koksvik, & Steinsbekk, 2011) and 8-10 weeks after the intervention was finished (Grønning, Midttun, & Steinsbekk, 2016).

Data collection
The first author (a trained interviewer) performed the individual face-to-face interviews in the period from January to March 2010. The interviews were tape-recorded and took place right after the 12-month follow-up data collection for the RCT (Grønning et al., 2013). Before the interviews were conducted, the research team developed a thematic interview guide (Table 1) based on a literature discussion and previous interviews. The main questions were open-ended. Depending on how freely the informants spoke, the interviewer followed up by probing sub-questions (e.g. could you tell more about that, could you give an example, is there anything else you would like to add) to get more and richer data.
The interview results at baseline (Grønning et al., 2011) and eight months earlier (Grønning et al., 2016) were read before each informant was interviewed, to state what the informants had said about how they experienced to live with arthritis at different time points. The rationale behind this was to help the informants concentrate their experiences to what had happened in their lives between the time points, how they managed their arthritis now, and if the nurse-led PE intervention had influenced their experiences in anyways. x What makes you feel good?
x What do you do to feel good? Learning experiences x What did you learn from participating in the PE program?
x Has the PE program made any differences in your life, please describe how?

Data analysis
The data were analyzed using a systematic text condensation (STC) (Malterud, 2012). STC is a descriptive thematic cross-case analysis strategy that is suited for presenting experiences as expressed by the subjects being interviewed (Malterud, 2012). The analyses consisted of four steps, starting to read all the transcripts to get an overall impression of the interviews and identifying preliminary themes associated with the LQIRUPDQWV ¶ perceptions of having a good life. Then, the first author identified and coded the meaning units, sorted the meaning units into categories, and related the categories to the preliminary themes. The authors discussed and refined the categories through several meetings, followed by process of condensation and summarized the data into generalized descriptions of what constituted a good life one year after attending the nurse-led PE intervention.
To ensure a correct representation of WKH LQIRUPDQWV ¶ YRLFHV WKH ILUVW DXWKRU ZHQW EDFN to the initial transcripts. Parallel to the analyses process, the research team searched for and went through the new literature on health promotion, self-management, and patient education. The analysis was data-driven within a health promotion framework as a template (WHO, 1986), focusing on health as a positive concept emphasizing social and personal resources as well as physical capacities. On this basis, the analysis was concentrating on what enables people to improve their health, how to identify and UHDOL]H GHVLUHV VDWLVI\ QHHGV DQG FRSH ZLWK RQH ¶V VLWXDWLRQ To systematize the transcripted data, the data management program of NVivo 11.0 (QSR, 2007) was used.

RESULTS
The sample consisted of 4 males and 11 female patients from 38 to 77 years old. The informants had different length of education, employment status, diagnosis, disease duration and medical treatment regimes. Table 2 presents the characteristics of the informants.  Table 3 presents an overview of how the informants described having a good life one year after attending the nurse-led PE intervention.

It is motivating to discover something new
The informants spoke about acquiring new knowledge from discussions and lessons in the nurse-led PE intervention. Sharing experiences of living with arthritis with other patients were especially helpful. The discussions on how to live with arthritis felt reassuring because the informants experienced that their invisible symptoms of pain and Nurse Media Journal of Nursing, 7(1), 2017, tiredness were acknowledged; the symptoms they had were confirmed as real, normal, EXW QRW GDQJHURXV RU OLIH WKUHDWHQLQJ /LVWHQLQJ WR RWKHU SDWLHQWV ¶ VWRULHV Ddded something extra, and it made it easier to accept the reality. Some informants said they felt better because they discovered that they had fewer problems with their arthritis compared to other patients in the group. Others said it was motivating to see that other patients did well. One informant said ³7DONLQJ WR RWKHUV PDGH PH DFFHSW WKH VLWXDWLRQ LW was normal to feel the way I did´ (Male, PsA for 17 years).
Although a few informants said they did not learn anything new about arthritis as a disease, they still experienced the discussions about living with arthritis as meaningful.
One informant highlighted that the group discussions had initiated a positive process that made her feel more confident in how to handle her arthritis. Others expressed how knowledge about practical advice was useful, while some said they learned new things about applying for welfare support, different technical aids that could be useful, medical treatment options, the necessity of asking for help, and that tiredness was a common and normal symptom.
Informants who had lived with arthritis for several years said they got positive feedback from the rest of the group when they talked about how they had handled their arthritis throughout the years. The feedback made them discover that they were valuable persons and a resource to other patients. These experiences made them feel good. One of the informants expressed ³, QRWLFHG WKDW P\ H[SHULHQFHV ZHUH XVHIXO WR WKH RWKHUV , JRW impulses from them. I think it was smart to have a group like this; it ZDV YHU\ QLFH´ (Male, RA for 14 years).
The informants also expressed that knowing more about arthritis made them more confident in how to handle their arthritis and they became hungry for more information after the nurse-led PE. The explained how they had searched for more knowledge and that they preferred literature that was scientific but written for ordinary people. One informant, in particular, said he had stopped searching for alternative therapies after the PE because he had learned something important about the immune system. He explained that now he knew that it could be dangerous to combine certain kinds of alternative therapies and disease modifying anti-rheumatic drugs (DMARDs). Before attending the nurse-led PE intervention, the informant used to think that increasing the immune system with herbs was important to beat arthritis.
As a final point, the informants pointed to the nurses as essential in the PE because they facilitated a friendly atmosphere. The atmosphere was essential for feeling comfortable in sharing experiences and asking questions. The nurses asked relevant questions and initiated good discussions, which gave the informants a positive drive to continue working with their personal goals. The informants also said it was reassuring to get information about where to call if they had questions to ask. One informant expressed what he had learned in the nurse-led PE intervention like this ³, JRW D GHHSHU LQVLJKW in WKH ³P\VWHU\´ RI DUWKULWLV´ (Male, PsA for 17 years).
Nurse Media Journal of Nursing, 7(1), 2017, Effective treatment is essential to feel good 7KH LQIRUPDQWV VWDWHG WKDW WKH\ GLG QRW FRQVLGHU WKHPVHOYHV DV SDWLHQWV RU ³EHLQJ VLFN´ as long as the arthritis was stable and controlled. Effective medications were essential to keep the arthritis stable with minimum symptoms. In periods when arthritis gave them few or no symptoms, the only thing that reminded them of having a chronic disease, was when they had to take their medications. On the other hand, in addition to having periods when the arthritis was stable, many of the informants had experienced that when the medications had stopped working, it caused more pain, loss of energy, bad sleep, depraved mood and a feeling of being ill. In these cases, the informants said they always believed that the doctors would come up with new suggestions of effective medications. How to handle changes occurring from ineffective medications and side effects was also a theme the informants learned about and discussed in the PE. They emphasized that knowing more about how to handle such incidents was both useful and comforting.

Making choices that feel right
Many of the informants were not in paid employment, but whether or not it was right to continue working was a topic raised by the informants. The informants spoke about valuable discussions focusing on what was the right choice for them. One informant explained how she had gone through a long and difficult process until she managed to conclude that she needed to prioritize her health rather than struggling to stay in her job. Another informant had come to a different solution. If he prioritized to exercise regularly, he got more energy and was able to work. Additionally, he spoke about a Nurse Media Journal of Nursing, 7(1), 2017, having a good cooperation with his employer who made extra efforts to make it possible for him to work. The employer facilitated both flexible working hours and flexibility in when he had to be present. The informants emphasized that the nurses and other participants in the PE group supported both solutions (to stop or to continue work) when discussing employment in the nurse-led PE intervention. One informant in the middle of a process of deciding whether she should continue to work or not said the discussions with the rest of the group made her more comfortable in making her decision. She stopped working but kept in touch with her colleagues since they had become important people in her life.

Having a good life
This study displayed that knowledge on how to make use of one ¶V resources to adjust to new situations is essential for patients with arthritis to have a good life. This finding is in line with other studies targeting how patients cope and manage their lives with arthritis (Bergsten et al., 2011;de Ridder et al., 2008;Dures et al., 2012). The analyses also revealed that the informants did remember and used the knowledge they learned one year earlier to manage their disease. The discussions with RWKHU SDUWLFLSDQWV DQG QXUVHV DFNQRZOHGJHG WKH LQIRUPDQWV ¶ V\PSWRPV DQG SUREOHPV Nurse Media Journal of Nursing, 7(1), 2017, related to having arthritis and helped the informants focusing on possibilities instead of limitations. According to the WHO, a perception of having good health is a major resource for social, economic and personal development and an important dimension of quality of life (WHO, 1986).
The literature on self-management states that patients need to know why and how to manage chronic illness (Schulman-Green, Jaser, Park, & Whittemore, 2016). This study explored what patients need to know, why, and how they can use knowledge to live a good life with arthritis. The analyses revealed how the informants related their actions and behaviors to the information learned in the nurse-led PE intervention to live a good life. According to the literature on health promotion (Lindstrom & Eriksson, 2005) and underpinned by several studies on PE for patients with inflammatory polyarthritis (Barlow et al., 2009;Zangi et al., 2015), diabetes (Anderson & Funnell, 2010) and across different chronic diseases (Stenberg et al., 2016), knowing how to make use of RQH ¶V RZQ UHVRXUFHV DQG FDSDFLW\ LV HVVHQWLDO WR FUHDWH JRRG KHDOWK Supporting patients to live good lives by deliberating how to manage their illness is also in line with the overarching goal of patient education started decades ago (WHO, 1986), and a key task, function, and goal for clinical nurses (Henderson, 2006).
Our findings also demonstrated that the informants valued and benefitted from the discussions on living with arthritis, including the possible impact arthritis might have on SDWLHQWV ¶ LGHQWLW\ ZKHQ FKDQJLQJ HPSOR\PHQW VWDWXV (Lempp, Scott, & Kingsley, 2006). Being aware of the significant risk of work disability in patients with inflammatory arthritis, Burton, Morrison, Maclean, & Ruderman (2005) proposed employment and possible adjustments at work as an important theme that needs to be discussed in PE. Patients need information on how to make adjustments, emotional support to deal with potential changes in employment status, and overall practical support (Zuidema et al., 2015). Several studies underpin that integrating these issues in PE are essential because being able to work KDV D SRVLWLYH LQIOXHQFH RQ SDWLHQWV ¶ TXDOLW\ RI OLIH (Gronning, Rodevand, & Steinsbekk, 2010;Holland & Collins, 2016). Furthermore, talking to others about feelings and emotions related to work loss may be important to deal with sorrow, until the person is ready and discovers how to manage a new life and identity without a job (Zuidema et al., 2015). The Ottawa charter for health promotion (WHO, 1986) emphasizes the importance of creating a new life and identity through developing SDWLHQWV ¶ VNLOOV DQG DEilities to identify and realize their aspirations. By enhancing SDWLHQWV ¶ VNLOOV LW LQFUHDVHV their possibilities to take more control over their own health and environments and to make choices conducive to health. The ideas from health promotion are parallel to the objectives of this nurse-led PE intervention (Grønning et al., 2012).

Sharing experiences
The value of sharing experiences, which included both newly diagnosed and experienced patients, were clearly the most appreciated impact from the nurse-led PE intervention. This finding confirms that the rationale behind the program (Grønning et al., 2012) (Svavarsdottir, Sigurdardottir, & Steinsbekk, 2015) also found that the personnel in charge was essential in establishing interpersonal relationships with their patients, capturing their learning needs, facilitating an effective dialogue and providing individualized patient-centered education (Svavarsdottir, Sigurdardottir, & Steinsbekk, 2015).
This study also supports the conclusion from a recent meta-synthesis (Schulman-Green et al., 2016) in that knowledge about disease processes and the role of medications is essential to successful self-management. The informants in this study highlighted that knowledge about medications was crucial for their ability to self-manage right after they had attended the nurse-led PE intervention (Grønning, Midttun, & Steinsbekk, 2016) because this knowledge made the participants more confident in taking their medications as prescribed. Knowledge about the disease process, particularly about the immune system and possible dangerous interactions between herbs and DMARDs was the knowledge that had made a significant impression. The informant that talked about this example was an experienced patient, diagnosed several years ago, and previously tried different DMARDs. This finding highlights the importance of providing patients with disease related information throughout the disease course as the EULAR recommendations for patient education for people with inflammatory arthritis state (Zangi et al., 2015). Patients should be offered PE at a minimum in the early stages of the disease, and when new pharmacological treatment is initiated.
7KLV VWXG\ YHULILHG WKDW HIIHFWLYH PHGLFDWLRQV LPSURYH SDWLHQWV ¶ TXDOLW\ RI life (Scott, Ibrahim, Lewis, Scott, & Strand, 2016;Strand et al., 2012) since the informants clearly spoke about that having a good life depended on effective medications. The RCT that nested this study (Gronning, Rannestad, Skomsvoll, Rygg, & Steinsbekk, 2014) showed a significant reduction in the objective measure of disease activity, DAS28-3, from baseline to 12 months in the group of patients who attended the nurse-led PE intervention. The DAS28-3 score is monitoring treatment response (van Riel & Renskers, 2016), and it is likely to assume that a decrease in disease activity is associated with effective medications. For medications to be effective, they are dependent on patients taking them as prescribed. The informants stated that they were mostly satisfied with their lives and that they had little symptoms. These statements may elaborate a bit about how the informants perceived the reduction in DAS28-3. Also, the informants had previously underlined that they had learned about the importance of taking medications as prescribed in the nurse-led PE intervention (Gronning et al., 2016).
The main strength of this study is that it is the first study that explores patientV ¶ experiences of participating in nurse-led PE one year after, and how participation may KDYH LQIOXHQFHG SDWLHQWV ¶ OLYHV resources, and skills to manage the disease. However, this design also introduces a major limitation, the risk of recall bias. The patients may not have remembered what they actually learned and discussed in the nurse-led PE Nurse Media Journal of Nursing, 7(1), 2017, intervention. It was evident from the interviews that some informants could not pinpoint the exact influence of the intervention on their current situation. To reduce recall bias, data from previous interviews were used to remind the informants of what they had said earlier. In some parts of the interviews, it was not clear if the informants related their descriptions to the PE or not. There were also a few parts which were not clear if the interviewer asked directly about the influence of the PE.
Nevertheless, the results related to the influence of the PE are based on the instances where it was possible to distinguish this. Another strength is the transferability of the findings. A rich description of the context and the participants is provided (Malterud, 2001), and the knowledge is applicable to patients with other chronic diseases as well (Stenberg et al., 2016). The themes in this nurse-led PE intervention are similar to those delivered in PE interventions targeting patients with other chronic illnesses.
In qualitative studies, it is also a risk of personal bias or interpretations during the interview process. To reduce this risk, all authors participated in the analyses process DQG GLVFXVVHG WKH SRVVLEOH LQIOXHQFH RI WKH UHVHDUFK WHDP ¶V EDFNJURXQG SRVLWLRQ DQG already existing knowledge about the topics related to the analysis process (Malterud, 2001). There is also a risk of selection bias due to only persons agreeing to participate in the RCT were included. However, the sample was heterogeneous with persons having different experiences, gender, ages and variations in diagnosis, disease duration, and disease severity. The characteristics of the informants are similar to other populations of patients with arthritis (Gronning et al., 2010).

CONCLUSION
The informants in this study reported that participating in the nurse-led PE intervention helped them discover new opportunities and perspectives in creating and having a good life when living with arthritis. The most important experience from the PE intervention was exchanging experiences with fellow patients. Clinical nurses ought to be aware of what patients consider as having a good life to support patients to take more control over their own health and environments and to make choices conducive to their health.