The main theme was “Standing on common ground enables individualized support.” This theme was supported by four categories: 1) Individualized support and patient-professional relationships, 2) Professionals as knowledge translators to help patients learn self-management skills, 3) Managing and coordinating multimorbidity in a system focused on single diseases, and 4) Shifting roles and differing views of responsibility for self-management. Categories and subcategories are presented in Table 2, and key words in the subcategories are italicized in the text.
Individualized support and patient-professional relationships
Patients and professionals said that health care should be individualized by taking the patients’ agendas into account and considering their knowledge about and capacity for self-management. Although patients had been invited for follow-up PHC visits about their chronic conditions, they were not always interested in talking about them, but rather could prefer to discuss symptoms or other concerns, such as a new skin lesion or hip pain. Professionals emphasized the importance of answering patients’ questions before bringing up their own agenda for the visits. They noted that if they did not answer patients’ questions, the patients sought care at other places or trusted what they read in newspapers or what neighbors said more than health care guidelines. Several of the patients brought up examples of feeling disappointed when their questions were not answered. One said, “I’m worried about my leg that becomes numb. Instead of investigating it, they gave me a walker and transportation service, but that doesn’t solve the problem” (Patient 1).
Professionals and patients brought up the importance of patients’ individual goals. When discussing goal-setting, physicians and RNs mostly thought of clinical goals such as blood pressure and blood sugar. Patients, on the other hand, talked about symptom relief and health goals related to things they appreciated in their everyday lives, such as working in the garden or being with their grandchildren. One patient was clear about not wanting preventive drugs, only those that gave symptom relief: “My goal is not to become 100, but to have pain relief, nothing else” (Patient 2).
Participants said that a trustful relationship facilitated self-management support. Patients and FCs appreciated to encounter professionals they knew and trusted. Even though a new professional could have read the information in the medical record, they preferred to see someone they had known for a long time. They thought that this person knew them, which meant they did not have to repeat their medical history and that the person cared about them. PHC physicians thought they had a better opportunity than hospital physicians to see their patients as individuals because they had known the patients for a longer time and were familiar with their family situations. This was something that RNs also mentioned as important. “Through home visits, I can get another picture of the person and the FC. It’s a whole image that you can’t achieve by reading the medical record” (RN 1).
Several things could negatively influence patient-professional relationships, such as a lack of trust in the professional’s competence. A couple of patients brought up not trusting their PHC physician’s competence in treating heart disease. Difficulty understanding a physician whose native language was not Swedish could also influence patient trust. One patient said: “And then there is this language problem that results in misunderstandings. It makes me feel so helpless (Patient 1).
Physicians, patients, and FCs, talked about support that went beyond informationand disease management. Physicians mentioned that patients often wanted to contact them because of anxiety, stress, or loneliness, not primarily because of disease. Patients brought up loneliness as something frightening, and one patient had continued to participate in the telemedicine program not for health reasons, but because she wanted the social contact.
Professionals as knowledge translators to help patients learn self-management skills
Physicians and patients reported that knowledge and understanding of their diseases, symptoms, and treatments were important for both self-management abilities and reducing anxiety. They thought that PHC had an important role to play as knowledge translator. Physicians saw it as their role to help patients understand their symptoms and how these symptoms correlated with their diseases. This was especially important when patients had several diseases that could cause the same symptoms (for example, COPD and chronic heart failure can both cause shortness of breath). “Patients know their symptoms, but why they have these symptoms and these problems and how they’re correlated with their disease, it’s our role to try to explain it to the patients” (Focus group 2).
Patients gave examples of how they had learned to act in response to different symptoms, e.g. increase their dose of medicine to decrease swelling in their feet. Patients also talked about when to initiate contact with the PHC center. For example, one patient would call her doctor if increasing the dose did not sufficiently decrease swelling. Patients brought up lack of knowledge and lack of ability using technology as barriers to self-management. Sometimes health problems (e.g., hearing impairment) made it hard for patients to understand new information; in these cases physicians needed the support of FCs.
Patients also gave examples of how knowledge and understanding could reduce anxiety. It was more frightening to experience symptoms that they could not interpret than to experience those that they understood. Some diseases, such as myocardial infarction, were more frightening than the chronic pain they had lived with for a long time, and those that were threatening made them more prone to make lifestyle changes.
Whereas patients talked about professionals’ pedagogical failings, professionals focused on their pedagogical strengths. Examples of pedagogical failings that patients mentioned included not answering patients’ questions and not explaining why different health parameters were to be checked (e.g. why patients needed to monitor their oxygen saturation). “Then I have this little tool that measures the oxygen level in my blood and that is new. I haven’t seen it elsewhere, and don’t really mind” (Patient 6). One patient who smoked also said that she was often met with admonitions that did not make her more likely to quit. As examples of pedagogical strengths, professionals noted the pedagogical tools they used in their consultations with patients. Physicians used analogies and pictures to explain concepts and sometimes printed out patients’ medicine lists and wrote clarifying information on them. To confirm that patients had understood them, physicians and RNs used questions that required the patients to summarize what the professional had said. One RN gave an example of how she could reassure herself that the patient had understand the physician’s prescription: “And then I ask about the blood pressure medicine, were you suppose to continue with it or not?... I try to have a conversation with the patient and see if they understood the information, and if they didn’t, I try to help them to understand.” (RN 3). The same RN also gave an example of a pedagogical failing neglegting to set goals for patients who feel unwell. “Normally I don’t set health goals with my patients if they’re too sick” (RN 3).
Physicians, patients, and FCs also talked about self-monitoring of health parameters. Patients sometimes initiated this monitoring on their own and sometimes at the request of professionals. Such monitoring could help patients better understand their diseases and thus facilitate self-management. For instance, patients felt they understood their blood pressure and blood sugar by measuring them, and in some cases, they learned how to respond to the results of the measures by changing medication regimens themselves. “Recording my weight has become like a compass. It helps me to adjust my medication” (Patient 10).
Managing and coordinating multimorbidity in a system focused on single diseases
This category deals with problems related to a health care system that the professionals and patients both saw as focused on single diseases. This meant that PHC played an important role in coordinating care in a fragmented system. Fragmentation of care forced patients with multimorbidity to visit different specialists every year for their diseases. Physicians reported that younger patients could have the energy to come to many visits, but older patients often appreciated being able to consult the same physician about all of their health problems. “It becomes an involuntary full-time job for the patients; it’s their 40-hour week” (Focus group 3).
Care coordination could be a bothersome issue for patients with multimorbidity. Physicians, patients, and FCs all gave examples of such problems. Patients mentioned that they did not know whether their PHC physician and hospital specialist communicated or not, and they did not even know if the different professionals at the PHC communicated with each other. Home care patients and FCs who registered health parameters in the telemedicine program could only share this information with the PHC center, not with the nurses who provided in-home care. This was because the home care nurses were employed by the municipality, whereas the PHC center belonged to the region. Physicians not only thought that specialized care was fragmented, but also experienced fragmentation at their PHC centers, where RNs have become increasingly specialized in different areas, such as diabetes or COPD. One said, “Our RNs have become more and more specialized, while we as physicians are the only ones left who have the general picture” (Focus group 3).
According to physicians, existing electronic medical records were a technical barrier to coordinated care, as were health apps, both of which they described as disease-oriented.
On the other hand, there were examples of better care coordination. The RNs talked about their role as coordinators of different caregivers for patients with multimorbidity. FCs, home care providers, care managers, and allied health professionals often played a crucial role for patients with multimorbidity, and the RNs saw themselves as being the person who pulled it all together. Patients also gave examples of coordinated care. One FC appreciated that the cardiologist made visits to the PHC center: “They’re an incredible team, together with all of you who take care of my husband” (FC 1).
Most physicians also saw it as their role to coordinate care and keep medication to a reasonable level for their older patients with multimorbidity. Some regarded themselves as their patients’ advocate in dealings with other specialists. One physician said: “I’m the patient’s gladiator against the system” (Focus group 1).
Accessibility to health care and time for patients with multimorbidity was also important for supporting self-management. Physicians wished for more time with these patients so that they could clinically evaluate the patients’ complex health problems. Physicians explained that patients with multimorbidity were crowded out because of increased access to PHC visits for people with all sorts of health problems, even problems earlier regarded as manageable at home. This was the result of changes in regional health care policy and led to long waiting times that made some patients with multimorbidity accumulate health concerns they wanted to bring up. One physician said, “It’s hard to solve everything at one visit, it just becomes messy” (Focus group 2).
Patients also brought up the importance of easy accessibility to PHC. When one patient first started to participate in the telemedicine program for chronic heart failure, he worried that he would lose this accessibility. “From the beginning, I didn’t think I could meet with doctors or nurses,” he said. When asked about what self-management meant to him, he replied, “It’s when the doctors don’t have the time for us anymore” (Patient 5).
Shifting roles and differing views of responsibility for self-management
This category describes the shifting roles that PHC professionals took to support patients’ self-management, as well as differing views of who is responsible for self-management.
A professional’s role in supporting self-management could shift by patient. Some patients with multimorbidity coordinated and managed their care independently, whereas others needed more support. Views of responsibility for self-management also differed, not just among professionals, but also among patients and FCs. Some preferred the professional to take a more controlling role; others emphasized the need for the professional to let go of control and to empower patients.
Professionals, patients, and FCs could believe that when professionals were in control, patients adhered to treatment better and felt safer and less anxious. One physician who believed it was important for her to maintain control said that she had to schedule regular checkups for patients to prevent their health from deteriorating. Otherwise, she thought they would not follow her advice. “I assume no one does what I say,” she stated (Focus group 2). Personal continuity could help physicians feel in control because it was easier to see changes in the clinical status of patients they had met before. Patients appreciated it when professionals had control of patient-related information, both through familiarity with a patient’s medical history and through ongoing monitoring. Several patients in the telemedicine program felt secure knowing that someone was keeping track of their health parameters and that the nurse would contact them if there was a change. This knowledge even prevented some from going to the emergency department. “I feel very secure,” said one patient. “Before, when I got chest pain or was anxious, I considered calling the ambulance. Now I don’t need to anymore” (Patient 8).
FCs could also play an important part in helping professionals see changes in the patients’ conditions: “I notice changes in my husband’s condition by being there every day,” said one person (FC1). For patients with more severe disability, support from a FC was not enough, and they needed extra assistance from the home care unit.
Some professionals regarded it as their role to motivate patients to take more responsibility for self-management. They favored patient empowerment to help patients take more responsibility for self-management, and believed that with the right knowledge, patients could manage their diseases better. The professionals were more likely to hand responsibility over to patients after having made sure the patients had such knowledge. “We want them to at least have the knowledge to make them live in symbiosis with their diseases in some way, and not let the disease become a monster that someone else takes care of” (Focus group 1).
Professionals also described how patients who managed their diseases more independently gave the professionals valuable time to see other patients in need. For most patients and FCs in the telemedicine program, recording the information felt meaningful and became an important daily routine. For others, this shift in responsibility felt challenging at times, and some patients were so sick that their FC had to record the information on their behalf.
Professionals also brought up personal continuity as an important tool to motivate patients in the long term. One said, “If you want to achieve a goal, it’s much easier to follow up your patient on a regular basis than to say, ‘See you in half a year’” (Focus group 1).
Professionals could find it challenging to motivate patients to take more responsibility, but it was easier with patients who already had a degree of motivation than those who did not. Physicians promoted group activities for patients and collaborated with RNs at the PHC center to talk about lifestyle changes with the patients. They also thought eHealth tools could play a role in this motivational work but could find it challenging to motivate patients to continue using these tools. “It’s not as fun to brush your teeth with an old toothbrush as with a new one” (Focus group 1).
Whereas some patients preferred professionals to take a lot of responsibility for managing the patients’ diseases and coordinating their care, others preferred to maintain overall control. They contacted the PHC center when they felt they needed to, and some would also independently change their medication regimens in agreement with their GP. “Then I increase my cortisone dosage myself, with the knowledge of my physician,” said one patient (Patient 2).