Seventeen participants completed the intervention. Two female participants did not respond to repeated invitations for an interview. Thus, fifteen semi-structured interviews were conducted, with nine women and six men, from September 2022 to January 2023. Two male participants chose to be interviewed face-to-face, while the rest preferred to participate in an interview by phone. The interviews lasted between 18–82 minutes, with a median of 26 minutes. The characteristics of the interviewed participants are described in Table 3 below.
Table 3
Baseline characteristics of the interviewed participants
Socio-demographics | N = 15 |
Age, median (IQR) | 56 (49;71) |
Sex, female, n (%) | 9 (60) |
Cohabiting, n (%) | 8 (53) |
Current connection to labour market, n (%) | 5 (33) |
Unemployed, n (%) | 1 (7) |
Early retirement, n (%) | 4 (27) |
Pension, n (%) | 5 (33) |
Disease related information |
Rheumatoid arthritis, n (%) | 6 (40) |
Psoriatic arthritis, n (%) | 5 (33) |
Axial spondyloarthritis, n (%) | 4 (27) |
Years living with IA, median (IQR) | 13 (6;16) |
Self-reported comorbidity, n (%) | 12 (80) |
Selected PROMs, VAS 0-100, median (IQR) |
Fatigue | 75 (58;92) |
Pain | 68 (54;75) |
PGA | 71 (57;79) |
IQR = Interquartile range; n = number; IA = inflammatory Arthritis; PROMs = Patient Reported Outcome Measures; VAS = Visual Analogue Scale; PGA = Patient Global Assessment.
The analysis derived four themes: 1) A new opportunity at the right time; 2) The importance of person-centred goals; 3) Empathy, partnership and a little nudging from HPs are essential; 4) I got more than I could have hoped for. In the following, each theme is described in detail and illustrated by selected quotations.
A new opportunity at the right time
The participants found it hard to recall their initial impression from the time when they entered the project, six months earlier. However, they shared their life circumstances, including the onset and progression of their arthritis over the years. The participants described how their IA affected all aspects of their lives with pain, fatigue and physical restrictions dominating their lives. Some found it difficult to sustain simple day to day tasks such as putting on socks or washing their hair. Several participants expressed that their mood had been negatively affected and described anxiety, depressive, or suicidal thoughts due to life traumas or severe pain, which made them feel that their life had become meaningless. Different strategies to manage their life with IA were revealed. Some participants took an active fighter approach: “I won’t let it win over me’”, “I do what I know is good for me” or “I want to take care of myself without help”, while others took a more passive or accepting approach, saying “After so many years, I have adjusted my life and learned to live with it.”
Their long-held challenges motivated them to participate in the INSELMA intervention, even though some worried their situation might be too complex for participation in the study. For a few, the motivation to participate represented a chance to contribute to research to improve future IA treatment for others. Many expressed a feeling that they were fighting their problems alone. They had yearned for change for a long time but had felt unable to do something about their situation themselves.
I started to cry when I got the offer. (...) When you guys called me, I was actually worn out in general. My thoughts revolved that FINALLY someone will listen to me. Maybe this time I won’t hit the wall. (Female, age 40–45 years)
The participants described how fatigue and physical restrictions had a great impact on their social life and social roles. The male participants talked about isolation and feeling very lonely due to invisible symptoms and lack of understanding from those in their familial network, while the female participants experienced receiving social support. However, some of the female participants found it difficult to set boundaries to take care of themselves, because of difficult life events or challenging family affairs. The participants who were still at the labour market, described how their arthritis affected their work life, leading to loss of identity. Several had taken early retirement due to their arthritis, one had been fired, while others had reduced working hours or had changed jobs because of their arthritis. The participants felt the offer to participate in INSELMA came at just the right time in their lives when they felt burdened physically, socially, and emotionally. The intervention provided a way to target challenges that they did not have energy or abilities to manage by themselves before participation in INSELMA.
My motivation was that I was at a time in my life, when I thought everything was a burden, as I gave IA the blame for everything. (...) Something else had to happen to get me out of the deadlock I was in. (Male, age 50–55 years)
Some explicitly wanted to have more time with HPs than usual and expected the HPs to be able to understand them better than their family and wider network. Thus, participation in the INSELMA intervention was a cherished opportunity to receive professional support to manage specific problems or improve their general wellbeing.
My expectation was not to become Superman, but just to get started and to implement working out twice a week. (Male, age 45–50 years)
The importance of person-centred goals
The outline of the intervention was experienced as highly acceptable and relevant. The participants experienced the goal setting process, with defining and working with activities as very person-centred because they focused on what was most important to them. Many of the participants had a clear vision of what they wanted to work with when they started the intervention.
I already knew beforehand what I wanted. I had given it a lot of thought. (...) Primarily being more pain free. (...) It was my focus. (...) How can I make my life easier with assistive devices? To wash my hair when in pain, it seems ridiculous. There were some basic things I could not do, when I first met with them, that I needed help with. (Female, age 40–45 years)
A few participants expressed that it had been difficult to define the activities that were specific enough to enable evaluation over time. These participants had chosen activities that were not quite realistic to achieve, and one expressed having too high expectations of the possible benefit from participating in the intervention.
The activities and goals defined during the initial consultation varied according to the impact on their daily lives. All participants had defined activities related to the physical impact of their arthritis, such as an intention to increase physical activity level or improve activities of daily living related to a painful limb. In addition, many wanted to work with self-management of fatigue or pain. Some had defined goals related to improvement of their social life, such as to see more people or practice setting boundaries and communicating the boundaries in their social network.
Most participants had been referred to a physiotherapist and/or an occupational therapist with experience in rheumatology at the hospital as part of the intervention and some had contact with a podiatrist or a psychologist in primary care. The opportunity to be referred to a rheumatology physiotherapist or occupational therapist as part of the INSELMA intervention was highlighted as being of great importance in achieving the experienced improvements. The therapists provided the participants with individual exercise plans, followed up on agreements, expressed empathy and stimulated the participants’ motivation for change. Furthermore, the therapists referred participants to further interventions or contacts in primary health care, and the occupational therapists supported the participants who needed to apply for aid in the municipality. The participants experienced that the interdisciplinary team worked together, while focusing on different aspects, which improved the overall outcomes.
I think it was great to be able to have the combination of physiotherapy and occupational therapy. (..) They also discussed with each other. (..) ‘How can we get there?’ (...) It was a group of competent people who could help me achieve what I wanted. I also told the nurse, when it was over, that it was a real shame that it didn’t continue. (Female, age 45–50 years)
The participants found the duration of the intervention appropriate to achieve a positive outcome and reach their goals. Some expressed a desire to continue working towards new goals, while others had concerns about difficulties staying on the right track without continuous support from the HPs in the future. They did not want to return to their pre-intervention state. While one participant suggested shorter or more intense courses targeting specific issues, most of the participants wished to continue with the consultations, either as continuously in fixed intervals or for shorter periods of time when needed. The participants were content with the frequency of consultations. Some expressed that it was important to have time between the consultations to work on their defined activities at home, to experience progress.
We saw each other (..) almost once a month. (..) It was appropriate, because you had time to improve and write down potential questions you had during that time. (...) Then, we had a measurement parameter on how much I was able to do and not do. (Female, age 40–45 years)
Empathy, partnership and a little nudging means everything
The participant’s experience of an empathic and trusting professional relationship with the HPs was emphasised as being of the utmost importance and an essential part of what made a difference to them in the intervention. All the participants expressed that the assigned nurses were able to create a safe space in which they felt comfortable talking about vulnerable issues. This encompassed their arthritis and mental health, as well as their overall life situation, including family issues that could affect their ability to take care of themselves. Some participants described the CRN as a companion that would take them by the hand or ear, walk with them and help keeping them on the right track. They highlighted that the interpersonal relation to the CRN influenced the extent to which they gained from the intervention.
And it helped me. Especially these conversations with the nurse. As a light to look forward to. I think [the nurse] was fantastic to talk to and [the physiotherapist] as well. Very empathic. I was relieved, happy and in a good mood. (Male, age 70–75 years)
The consultations with the nurses enabled the participants to reflect on their expectations, values, life situation, and habits. Some found that the conversations helped them acknowledge their own strengths and resources, which further motivated them and led them to change their mindset regarding their life situation.
The participants greatly valued the ongoing support from the CRN, who demonstrated dedication, empathy, expertise, knowledge, and consistency in addressing their specific needs. They perceived that they had a collaborative partnership with the HPs in general, where they felt seen, heard, understood, acknowledged, and validated with respect to their challenges perhaps for the first time since being diagnosed. This instilled hope for the future.
Well, this [INSELMA] has meant everything. Because my own rheumatologist said: ‘Well, we cannot do more. We cannot increase the pills.’ (...) Now, here was someone saying: ‘Can we do something? Can we improve it [disease impact]? (Female, age 70–75 years)
The participants considered that the initial consultation with the CRN should be face-to-face to establish a confidential relationship. Those with multiple symptoms, long travel time, or an active work life, appreciated the opportunity for follow-up by telephone. However, participants who expressed loneliness, anxiety, or psychosocial problems preferred face-to-face meetings, as they valued eye-contact and the ability to read the nurse’s body language. In addition, the participants felt that assessments and consultations with the therapists needed to be face-to-face.
Some participants reflected on their own responsibility. They expressed that their expectations towards the content, goals and possible outcome had to be realistic, achievable, and aligned with those of the HPs. They considered that it was necessary to feel truly motivated and ready to engage and do the work necessary to experience progress and benefit from the intervention. Some reflected upon the possibility of group sessions as part of the intervention. While some were open to group sessions as a possibility to share experiences, several emphasised that they preferred not to participate in groups, because their problems were too sensitive and personal to be discussed in plenum.
The participants especially appreciated the CRNs’ communication skills. A few noticed that the CRN had not fully incorporated the new conversation techniques (the ACT principles) in their natural vocabulary. Overall, the participants found that the explorative questions the CRN used made them reflect on their problems, view them in a different way, and work towards accepting some limitations.
The nurse asked in a way that made me dig a little deeper and find more that I had pushed aside and just given up on. (..) We actually worked with that. Here was someone cheering on you saying: ‘Now you do something about it. Now we will try to do something about it.’. (Female, age 45–50 years)
I got more than I could have hoped for
In general, the participants were delighted to have participated in the intervention and they experienced the impact of INSELMA as very positive. Several shared that they experienced relieved physical symptoms, improved mood, had increased their physical activity level or had changed habits to achieve their goal or to be able to perform a chosen activity. The experience of less disease impact encompassed reduced morning stiffness, improved mobility, lower pain level, improved quality of sleep and less fatigue. Some participants said that they had reduced their use of painkillers. Several expressed gratitude and became emotional when talking about the positive impact the intervention had on their lives.
It [INSELMA] has improved my quality of life by 99%! (..) When you feel that you can only sit on the couch and watch TV, walk with crutches to the kitchen (..) or go shopping with a walker. (...) Suddenly, now I can walk, bike and everything. (...) I sleep better at night. (...) When my grandchildren say: ‘Wow Dad, have you seen how fast grandma is walking now?’ That is proof that others notice that it has helped. (Female, age 70–75 years)
Many of the participants also experienced a positive shift in their mindset. For some, this included social aspects as they had improved communication with their family network and set boundaries to take care of their own needs, which relieved them from feeling pressured by social expectations. They expressed having worked with their self-image to adjust their own expectations of their abilities, which reduced their feelings of guilt that they were not doing enough. As a result, they experienced improved coping and mental well-being.
We started making some [goals] about my fatigue and ability to plan my day. (...) It quickly became clear that it was not the main problem. (...) What frustrated me was that I expected to be able to do more. (...) I was that kind of person. I had not fully accepted that I had a chronic disease. (...) There are always some superhumans in the world (..) and compared to them, you can’t do as much. (...) This is where I think the project made a clear difference. I have found a realistic approach to what I can do, but also realised that I did more than I thought. (Male, age 50–55 years)
All the participants had lived with IA for many years and appreciated the opportunity to refresh or gain new knowledge about their arthritis and how to improve life with the chronic condition. Some had already been very active in seeking information online or on social media about self-management of their symptoms before participating in the intervention, but they found it difficult to find useful and trustworthy information. The INSELMA intervention made them aware of opportunities to join patient groups or avail of other support opportunities in primary care.
This course refreshed what I learned many years ago, but never managed to do something about. (...) Now I use the arthritis association. I have become aware that they have many events. (Female, age 60–65 years)
Some participants reflected on their overall experience of the healthcare system. As many lived with comorbidities and had struggled to navigate the system, they felt that the INSELMA intervention provided a holistic assessment where all aspects of their life situation were taken into consideration and put into an overall context. This was something they had lacked for a long time that they found refreshing.
It was like an overall view on me as a person. Because I think that many of the problems, I have had in the last (..) 9 years could have been avoided if one [the system] had listened to me to begin with and perhaps taken a holistic view of me as a person and had not only looked at the individual joint. (Female, age 40–45 years)
The participants appreciated the assessments and exercises provided by the physiotherapists, which, in combination with emotional support from the nurses, helped them become more aware of reasons to be and how to be physically active or understand that physical activity encompasses more than planned physical exercise. Almost all participants reported an increase in physical activity after participating in INSELMA. They highlighted the benefits of physical activity for not only symptom management but also their general well-being. Walking, swimming, or light weightlifting had already been an essential part of the participants’ daily lives even before participating in the intervention. Some participants shared that they had adopted new habits during the intervention. These included joining the local gym, fixed agreements with family members about joint exercise or taking initiatives in local IA associations. They felt more motivated and capable of taking action in the future.
I am surprised how deeply we got into what really bothered me in my daily life. (...) What surprised me the most is that I came out of this thinking I have gained so much. I did not expect that. I thought ‘well I will give it a shot. It might help’. However, it has definitely had an impact on me, going home and making appointments with the family. It is giving all of us something. We are together about things now. (Female, age 45–50 years)
A few of the participants expressed that they did not experience any improvement from participating in INSELMA, although it had been a pleasant experience with empathetic HPs. Nevertheless, one of these participants had resumed physical activity after having paused for several years, and another expressed that the INSELMA consultations resembled their regular consultation in clinical practice.