The Patient - Patient-Centered Outcomes Research (2021) 14:719–740 https://doi.org/10.1007/s40271-021-00514-2 SCOPING REVIEW The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self‑Management Interventions: A Scoping Review of Reviews Ena Niño de Guzmán Quispe1 · Laura Martínez García1,2 · Carola Orrego Villagrán3,4,5 · Monique Heijmans6 · Rosa Sunol3,4,5 · David Fraile‑Navarro7,8 · Javier Pérez‑Bracchiglione9 · Lyudmil Ninov10 · Karla Salas‑Gama11,12 · Andrés Viteri García13,14 · Pablo Alonso‑Coello1,2 Accepted: 26 March 2021 / Published online: 19 April 2021 © The Author(s) 2021 Abstract Background Self-management (SM) interventions are supportive interventions systematically provided by healthcare profes- sionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients’ and caregivers’ preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspec- tives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention’s usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decision- making processes, including the formulation of recommendations, and the design and implementation of SM interventions. Abbreviations 1 Introduction COPD Chronic obstructive pulmonary disease COS Core outcome set The increasing burden of chronic diseases on healthcare and HF Heart failure society has become a significant concern over the last dec- SM Self-management ade. A response to this challenge requires moving towards T2DM Type 2 diabetes mellitus more patient-centred strategies, one of the main components of which is self-management (SM) interventions [1–3]. SM interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills of patients and their confidence in their * Ena Niño de Guzmán Quispe ability to manage chronic diseases [4]. Despite the increasing ENino@santpau.cat number of SM interventions and promising evidence of their Extended author information available on the last page of the article beneficial effects, no structured and accessible summaries Vol.:(0123456789) 720 E. Niño de Guzmán Quispe et al. caregivers and will be informative for healthcare decision Key Points for Decision Makers making in this field (e.g., design, implementation or evalua- tion of SM interventions and alignment of recommendations We identified 12 main themes covering aspects of the with patients’ values). We believed a mixed-methods scop- process of self-management (SM) alongside the disease ing review of reviews [15, 16] would be a suitable method to trajectory, the factors that influence this process, and synthesise these sources of evidence. We had two objectives: experiences of SM interventions from the perspective of to summarise the preferences and experiences of patients, patients and caregivers. informal caregivers, and healthcare professionals with SM Our findings on what patients with the four chronic in four chronic diseases and to identify and describe the rele- diseases (type 2 diabetes mellitus, obesity, chronic vant outcomes for SM interventions from these perspectives. obstructive pulmonary disease, or heart failure) and their caregivers describe as relevant regarding SM should be considered when selecting patient-important outcomes in 2 Methods this context. We conducted a mixed-methods scoping review of reviews This set of themes can help guide the design and imple- based on Arksey and O’Malley’s methodology [17–19] and mentation of SM interventions. reported findings using the Preferred Reporting Items for Our findings can inform healthcare decision making, Systematic Reviews and Meta-Analyses Extension for Scop- including the formulation of recommendations and the ing Reviews (PRISMA-ScR) checklist [20]. development of decision aids. 2.1 Eligibility Criteria of evidence about their effectiveness, cost effectiveness, and 2.1.1 Type of Reviews implementation considerations are yet available [5, 6]. In this context, making informed decisions about the use of We included systematic reviews of primary studies of any SM at clinical, organisational, and policy levels is still chal- design using quantitative, qualitative, or mixed synthesis lenging. To bridge this gap, the project COMPAR-EU was methods. We considered a review as ‘systematic’ when designed to identify the most effective and cost-effective it reported a search strategy in at least one database. We SM interventions for four high-priority diseases in Europe: excluded primary studies and overviews. type 2 diabetes mellitus (T2DM), obesity, chronic obstruc- tive pulmonary disease (COPD), and heart failure (HF) [7]. 2.1.2 Population In COMPAR-EU, the perspectives of patients and car- egivers (informal caregivers and healthcare professionals) on We included reviews that covered at least one of the fol- SM were contemplated as a key component in, for example, lowing populations of interest: (1) adult patients (aged ≥ 18 the development of the Core Outcome Sets (COS) of SM years) with one of the four selected chronic diseases (T2DM, interventions and the development of recommendations [8, obesity, COPD, or HF), without restrictions on severity; 9]. Perspectives are conceptualised as the result of prefer- (2) informal caregivers, mostly family members who take ences for and experiences with SM. Preferences represent care of patients without payment; and (3) healthcare pro- the relative desirability of specified alternatives among out- fessionals, at any level of care in charge of patients with comes [10], and experiences explain the nature and impact these chronic diseases. We excluded reviews addressing of chronic diseases and how a specific intervention affects patients with type 1 diabetes mellitus, gestational diabetes, the health and quality of life of patients [11]. pregnancy-related obesity, or mental or oncological comor- In the last decade, systematic reviews of qualitative and bidities. Reviews addressing more than one chronic disease mixed-method research synthesis have provided a more or type of population were included if they reported disag- detailed understanding of the complexity of chronic diseases gregated results. and their treatment from the perspective of patients and their caregivers [12, 13]. More recently, there is a growing interest 2.1.3 Phenomenon of Interest in assessing patients’ preferences and developing systematic reviews of quantitative preferences studies [14]. However, We included reviews that explored (1) patients’ prefer- to date, no systematic analysis has been undertaken of quan- ences, (2) caregivers’ preferences (informal caregivers and titative and qualitative evidence focused on patients’ and healthcare professionals), (3) health states related to the caregivers’ preferences for and experiences with SM. This disease (outcomes), and (4) experiences with SM. SM was analysis will shed light on what matters most to patients and conceived as a dynamic, interactive, and daily process in Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 721 which individuals managed chronic diseases [21]. Prefer- extraction, a second author cross-checked data. Disagree- ences regarding health states can be reported as utility and ments were solved by discussion. For reviews exploring non-utility measures [22–24]. Health state utility measures preferences quantitatively, we collected the health states represent the strength of individuals’ preferences for specific assessed, the utility estimates, and methods used to obtain health states or conditions, using a scale typically anchored them. For reviews exploring preferences or experiences at ‘one’ (full health) and ‘zero’ (dead) [25, 26]. Non-utility qualitatively, we included descriptive summaries of findings measures include other measures explaining patients’ prefer- of primary studies (second-order constructs) or synthesised ences through qualitative (e.g., focus groups) or quantitative summaries proposed by the review authors (third-order con- (e.g., surveys) methods [24]. Experiences with SM could structs) [30]. relate to any processes of SM [21] or experiences with SM interventions. We excluded reviews evaluating the effective- 2.5 Analysis and Synthesis ness or cost effectiveness of SM interventions. We classified reviews according to the design of included pri- 2.1.4 Context or Setting, and Language mary studies into (1) quantitative systematic reviews (quan- titative research), (2) qualitative evidence synthesis (qualita- We included reviews of studies conducted in any country tive research) [31], (3) mixed-methods research synthesis [32] or setting except those limited to inpatient care. We only (quantitative and qualitative or mixed-methods designs), and included reviews published in the English language. (4) other types of review (literature reviews or scoping reviews). Quantitative data concerning utility measures for different 2.2 Search Strategy health states (or outcomes) were tabulated and narratively synthesised by topic and methods applied. Qualitative data We developed and conducted specific searches in MEDLINE concerning the second- and third-order constructs of qualita- (through PubMed), CINAHL, and PsycINFO from incep- tive evidence synthesis, narrative findings (i.e., non-utility tion to December 2020. We had the assistance of a senior measures) of quantitative systematic reviews, or mixed- researcher expert in search strategies development (IS). We methods research synthesis were synthesised applying a included CINAHL and PsycINFO as they are considered descriptive thematic synthesis proposed by Thomas and good sources of qualitative studies and include topics related Harden [33]. This process included (1) inductively codifying to nursing and psychological interventions [27]. We included the findings line by line, (2) proposing descriptive themes, terms designed explicitly for values and preferences studies and (3) identifying the main themes based on conceptual [28] combined with medical subject heading terms and free similarities within and across chronic diseases. One author text for each chronic disease. To enhance the sensitivity for (ENDG) conducted these steps independently, then a second qualitative reviews, we included qualitative synthesis method author cross-checked and validated the descriptive and main terms (e.g., meta-ethnography). We adapted the MEDLINE themes (DF, JP, KS, AVG). Disagreements were solved by strategy for each database using database-specific headings. discussion or with the help of a third author. We applied the review filters available in each database [29]. A final step included categorising the identified descriptive themes and subthemes into three categories: SM intervention 2.3 Selection of Studies outcomes, modifiable factors (barriers or facilitators) of SM interventions, or both SM intervention outcomes and modifi- Four authors (ENDG, DF, JP, KS), working in pairs, were able factors. Two authors (ENDG, MH) decided the category involved in the selection of studies. A calibration with 20% of to which each theme or subtheme belonged based on their references was conducted by pairs. After achieving 80% agree- importance for the development of SM interventions, their ment in calibration, one author conducted title and abstract current use as a measure of effectiveness, and their potential screening and a second author cross-checked this selection. impact. One author (ENDG) first did this independently, and Disagreements were solved by discussion or with the help of a this was cross-checked by a second author (MH). This classifi- third author. The same process was applied for full-text assess- cation was developed and refined through an iterative process. ment. References were managed with Endnote X9. 2.4 Data Collection 3 Results We collected the general characteristics and main findings Searches resulted in 11,785 unique references; 448 records of each review in a previously pilot-tested data extraction were selected for full-text screening, and a total of 148 form. Five authors (ENDG, DF, JP, KS, AVG), working in reviews were finally included (Fig. 1). Excluded reviews pairs, were involved in data collection. After the first author and the reasons for their exclusion are available in ESM 2. 722 E. Niño de Guzmán Quispe et al. 3.1 Characteristics of Included Reviews COPD severity [46, 65, 66], moderate and severe exacerba- tions [46, 65, 67, 68], dyspnoea and its progression [46], We included 148 reviews, distributed as follows: T2DM HF diagnosis [69, 70], chronic heart disease [71], changes (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = in severity levels [69], and angina and its progression [70]. 32 [21.6%]), HF (n = 38 [25.7%]), and those with more These health states reflect how the perceived importance than one chronic disease (n = 5 [3.4%]). Three included increased with disease severity. This theme included four both COPD and HF [34–36], one included both T2DM and subthemes: physical functioning, psychological distress and COPD [37], and one included COPD, HF, and T2DM [38] stigma, fear of complications, and mortality. (Table 1; ESM 3). Overall, almost half of the reviews were Physical Functioning Life transitions, getting older, and published after 2015 (n = 70 [47.3%]), were qualitative evi- cognitive issues could inhibit SM in T2DM [54]. Most dence synthesis (n = 78 [52.7%]), and included ≤20 studies patients with obesity perceived themselves as having poor (n = 81 [54.8%]). Most reviews addressed only the perspec- fitness and low confidence in their physical capability [61]. tive of patients (n = 113 [76.4%]), with some including In COPD and HF, fatigue was a common symptom with more than one perspective (n = 23 [15.5%]), and a minority a negative impact on patient quality of life [35]. In these focused on informal caregivers or healthcare professionals patients, damaged lung function, declines in cognitive status, only (n = 12 [8.1%]). The majority addressed experiences and effects of symptoms and treatments interrupted patients’ with the SM process (n = 110 [94.4%]); others also focused previous functioning and increased dependency [42, 43, 49, on experiences with SM interventions (n = 40 [27.0%]) or 51, 52, 55, 72, 73]. Because of symptoms, some patients lost preferences for health states (n = 19 [12.8%]). the ability to engage in favourite pastimes and social activi- ties [50, 56, 74], leading to involuntary social isolation [41]. 3.2 Identified Themes Psychological Distress and Stigma Patients’ psychologi- cal distress was expressed across the four chronic diseases in We identified 12 main themes, eight regarding the process terms of a sense of failure, loss of control, self-blame, anxi- of SM and four regarding experiences with SM interven- ety, frustration, fear, sense of isolation, negative attitudes tions (Fig. 2). or impaired mood, depression, and loss of independence and well-being [40, 41, 51, 54, 56, 59, 61, 74–98]. Infor- 3.2.1 The Process of Self‑Management mal caregivers of patients with HF or COPD also described conflicting emotions [36]. Some healthcare professionals The process of SM included four themes about the experi- experienced negative emotions in dealing with patients with ence of SM, and four referred to factors influencing the SM T2DM, such as frustration around patient compliance [93] process. or inadequacy and helplessness at not being able to address psychosocial concerns [99]. 3.2.1.1 The Experience of Self‑Management Progression of In patients with T2DM, obesity, or COPD, external the Disease T2DM was described as a complex experience stigma included experiences of blame or negative judgement characterised by ambivalent feelings [39]. Perception of from healthcare professionals or others. Stigma was asso- severity changed over time and was influenced by the pres- ciated with severed relationships; social isolation; reduced ence of symptoms and complications [40]. Most patients work opportunities; and distress, depression, anxiety, and with COPD had never received a formal diagnosis or were lowered self-esteem, self-worth, and patient self-efficacy not informed of their diagnosis for many years [41]. They [37, 41, 81, 88, 89, 91, 100]. In patients with T2DM, the described their disease as a “roller coaster” experience [42– perceived stigma was related to their experience of insulin 44], where dyspnoea was the prominent symptom [42, 44, self-injection [37, 76, 79, 101]; in patients with COPD, the 45]. In these patients, the extent of symptom relief was con- internalised stigma was evident when they described their sidered even more important than treatment for extending disease as “self-inflicted” [41]. life [46]. COPD exacerbations were experienced as “near Fear of Complications The relevance of acute and chronic death” or the “shadow of death”; they were unpredictable complications of T2DM from the perspective of patients var- and led to the patient living in a state of constant arousal ied [62, 63, 78, 102–104]. The health states with the high- and hypervigilance [44, 45, 47]. HF was also described as est impact on patients’ quality of life (lowest utility values) an extreme, unpredictable, and confusing disease [48] with were severe painful diabetic polyneuropathy [102], stroke, ubiquitous, ongoing, and disruptive symptoms [48–53]. end-stage renal disease, and amputation [63]. Achieving gly- Competing comorbidities were described as barriers to caemic control was valued more highly than avoiding hypo- SM across the four chronic diseases [51, 54–61]. We identi- glycaemia, except for nocturnal hypoglycaemia [105]. Older fied utility estimates for eight health states: T2DM diagno- patients were more concerned about detecting low than high sis [62, 63], weight change in T2DM and obesity [62, 64], blood glucose levels [106]. The main concerns related to Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 723 Fig. 1  PRISMA flowchart. *Reasons for exclusion: method of evaluation (n = 11), phenom- enon of interest (n = 208), pop- ulation (n = 26), study design (n = 48), other reasons (n = 7). 1 Only T2DM: 53, with other diseases: 2. 2Only COPD: 32, with other diseases: 3. COPD chronic obstructive pulmonary disease, HF heart failure, T2DM type 2 diabetes mellitus hypoglycaemic episodes were not being able to predict and healthcare professionals waited for the other to initiate end- manage them. These factors influenced patients’ emotional of-life conversations, differentiating between a “good” and state, daily functioning, and engagement with their insulin “bad” death, the latter defined as being unexpected and treatment [75, 79, 107]. unprepared [49, 51, 56, 86, 108, 109]. Mortality In T2DM, COPD, and HF, both patients and Self-Management Behaviours Only when patients informal caregivers recognised feeling fear about worsen- accepted their T2DM were they motivated to take care of ing symptoms and about dying prematurely and uncertainty their health. Some were motivated to SM because of fear of about the future, especially during acute events that required leg amputation [106]. Hypoglycaemia, as a learning expe- hospitalisation [36, 56, 73, 75]. In HF, both patients and rience in patients, contributed towards reflective learning, 724 E. Niño de Guzmán Quispe et al. Table 1  Characteristics of Characteristics T2DM Obesity COPD HF More Overall included reviews than one disease Reviews 53 (35.8) 20 (13.5) 32 (21.6) 38 (25.7) 5 (3.4) 148 (100.0) Publication year 2002–2015 26 (33.3) 11 (14.1) 15 (19.2) 25 (32.1) 1 (1.3) 78 (100.0) 2016–2020 27 (38.6) 9 (12.9) 17 (24.3) 13 (18.6) 4 (5.7) 70 (100.0) Type of review Quantitative systematic review 14 (45.2) 4 (12.9) 7 (22.6) 6 (19.4) 31 (100.0) Qualitative evidence synthesis 25 (32.1) 12 (15.4) 20 (25.6) 18 (23.1) 3 (3.8) 78 (100.0) Mixed-methods research synthesis 11 (35.5) 2 (6.5) 4 (12.9) 12 (38.7) 2 (6.5) 31 (100.0) Other types of reviews 3 (37.5) 2 (25.0) 1 (12.5) 2 (25.0) 8 (100.0) Included studies 2–20 27 (33.3) 13 (16.0) 21 (25.9) 17 (21.0) 3 (3.7) 81 (100.0) 21–40 19 (44.2) 7 (16.3) 5 (11.6) 11 (25.6) 1 (2.3) 43 (100.0) 41–213 6 (28.6) 6 (28.6) 8 (38.1) 1 (4.8) 21 (100.0) Non-reported 1 (33.3) 2 (66.7) 3 (100.0) Population Patients 42 (37.2) 15 (13.3) 25 (22.1) 27 (23.9) 4 (3.5) 113 (100.0) Informal caregivers 3 (30.0) 6 (60.0) 1 (10.0) 10 (100.0) Healthcare professionals 1 (50.0) 1 (50.0) 2 (100.0) More than one perspective 10 (43.5) 4 (17.4) 4 (17.4) 5 (21.7) 23 (100.0) Phenomena of ­interesta Preferences on health states 10 (52.6) 1 (5.3) 5 (26.3) 3 (15.8) 19 (100.0) Experiences with SM process 36 (35.3) 15 (14.7) 19 (18.6) 29 (28.4) 3 (2.9) 102 (100.0) Experiences with SM interventions 11 (27.5) 6 (15.0) 12 (30.0) 9 (22.5) 2 (5.0) 40 (100.0) Data are presented as n (%) COPD chronic obstructive pulmonary disease, HF heart failure, SM self-management, T2DM type 2 diabe- tes mellitus a More than one phenomenon of interest was possible which was important in effective SM of blood glucose [107]. professionals [81, 89]. Patients with COPD typically sought Patients with T2DM preferred flexible SM routines to ensure initial treatment for an acute episode rather than for early minimal disruption of their everyday life [54, 110]. In this symptoms. Most patients articulated ambivalent attitudes subpopulation, having patience predicted more self-care towards help seeking, even in emergencies, which were behaviours [111]. In COPD, and HF, previous experiences driven by a fear of dying, and most also often expressed a also helped patients gain expertise in their body responses, strong desire to maintain autonomy [43–45, 47, 72, 121]. allowing them to adopt a regulatory role and adjust their Similarly, some patients with HF chose to take an active role, lifestyle [41, 73, 92, 112]. These changes were sometimes whereas others relinquished the responsibility to others [59] driven by their motivation to prevent a COPD exacerbation with feelings of losing control [56]. In obesity, healthcare [45, 73, 74]. Stable COPD management was perceived to be professionals’ uncertainty over their responsibilities could integrated into everyday life rather than being a priority [41]. lead them to take a limited or inconsistent role in delivering Having a greater sense of control, using problem-focused services [81]. coping strategies, and perceived self-efficacy appeared to Adherence to Treatment Patients’ adherence to treat- be associated with favourable outcomes in COPD [45, 84, ment usually refers to both medication-taking and lifestyle 113, 114] and HF [34, 56, 58, 109, 115–120]. This theme behaviours [40]. The influence of habits on adherence to included four subthemes: help or health-seeking behaviour, treatment, diet, and lifestyle plans was challenging for most adherence to treatment, smoking behaviours, and weight patients with T2DM [83, 92–96, 99, 106, 122, 123]. In control. T2DM, successful experiences reinforced treatment beliefs Help or Health-Seeking Behaviour Patients with obesity, [40], whereas, in obesity, most patients were attracted to especially women, reported personal barriers to attending realistic, feasible, and inclusive diet plans [90, 124, 125]. appointments or discussing their concerns with healthcare Reasons for weight loss failure included stress, slow weight Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 725 Fig. 2  The process of self-man- agement (SM) and the experi- ence with SM interventions. The numbered themes are the main themes, see descriptions in the text loss, boredom, comfort and reward eating, lack of time, and effects, as measured in willingness-to-pay or discrete- feeling depressed or upset [126]. In patients with COPD, choice exercises [105, 129]. Fear and anxiety about those who generally adhered well to medication were moti- hypoglycaemia, injection pain, and weight gain were vated by the fear of dyspnoea and vulnerability [44]. Lower perceived as significant mediators in insulin utilisation adherence was associated with disease severity, concerns [130], whereas, in COPD, some considered avoiding an about adverse effects, smoking, forgetfulness, comorbidities, adverse event to be more important than other treatment and polypharmacy [55]. In HF, medication management and aspects [46]. compliance with a sodium-restricted diet were reported to • Treatment burden: Emotional reactions to treatment pro- be influenced by physical, social, and material determinants, gression (diet to pills to insulin) affected the way patients knowledge, and cost-benefit analysis [109, 127]. In T2DM coped with T2DM [40, 96]. Misconceptions and a lack and HF, integrating SM strategies into everyday routines of knowledge led some patients to fear insulin therapy increased adherence [40, 109, 117] where informal caregiver [76, 131]. Insulin therapy and dose adjustments were support was a facilitator [117]. In contrast, frequent changes burdensome, time consuming, complicated, and a cause of healthcare professionals or conflicting advice between of discomfort [75–77, 95, 130, 131]. For patients who services were barriers to adherence [128]. In T2DM, most had never been treated with insulin, oral administration healthcare professionals viewed non-adherence mostly as and reduction of the number of insulin injections were patients’ failure [99]. This subtheme included two more spe- preferred [105]. Patients with COPD and their infor- cific themes: adverse events and treatment burden. mal caregivers found it challenging to balance daily life activities with the treatment workload [41]. In HF, some • Adverse events: Some patients with T2DM highly valued patients recognised cognitive vulnerabilities in adhering avoiding transient nausea and gastrointestinal adverse to treatment regimens [109]. 726 E. Niño de Guzmán Quispe et al. Smoking Behaviours Smoking in patients with COPD Patients valued informal caregivers’ help in identifying was associated with anger, guilt, self-blame, and shame, acute and chronic clinical status changes and contributing all of which can adversely impact motivation for SM [43, daily and positively to self-care [141]. Informal caregivers 44, 47, 73, 91]. Healthcare professionals need to be aware of patients with COPD described that they had to adjust of patients’ smoking history when providing advice to quit their routines and be vigilant [36]. In HF, informal caregiver smoking [47]. However, for patients who smoked, this support was seen to facilitate adherence, especially during advice could conflict with their increased desire to smoke symptom exacerbation [117]. as a coping strategy [43]. Some patients identified smoking Interaction with Healthcare Professionals Across the cessation as a desirable goal yet had no conviction that they four chronic diseases, factors that enhanced adherence to could realistically achieve this [132]. SM tasks included adequate communication with health- Weight Control For some patients with T2DM, weight care professionals; empathy, emotional support, relational, control was ranked as very important, as measured in will- and compassionate care from healthcare professionals, and ingness-to-pay or discrete-choice exercises [105, 129], and feeling confident in their competence [41, 42, 44, 45, 47, was a concern when starting insulin therapy [131, 133]. 50, 54–56, 59, 60, 81, 86, 89, 95, 96, 98, 106, 108, 121, Weight self-monitoring in obesity was considered as fos- 123, 130, 149]. Nevertheless, fear of being judged, not want- tering ownership and self-knowledge, increasing the ability ing to disappoint healthcare professionals, embarrassment, to understand and self-control weight loss and maintenance language discordance, and experiences of lack of respect, success [134]. Patients with heart failure were also con- support, and understanding from healthcare professionals cerned about weight-related problems and weight monitor- hindered effective collaborative management [57, 85, 89, ing [50]. 99, 107, 110, 128, 149]. Patients felt ownership when their Social Support Social networks, perceived social support views and experiences were valued [150], but in some cases, (financial or emotional), gender roles, and marital status patients were not always good at expressing their needs [98]. appeared to influence self-care and the perceived barriers Most patients with HF had trouble explaining breathlessness to SM across the four chronic diseases [37, 41, 42, 45, 50, [53]. In COPD and HF, most informal caregivers felt like 60, 85, 92, 95, 96, 98, 107, 110, 114, 119–121, 123, 130, outsiders or abandoned in care processes [36, 143, 151]. 131, 135–140]. A lack of or insufficient social support could Healthcare professionals considered limited resources, affect mortality and morbidity outcomes [57, 85, 92, 98]. In heavy workloads, or environmental constraints to be bar- T2DM, the desire to participate in family events was a pow- riers to implementing SM [93, 143]. Of these, consultation erful motivator [141]. Patients with COPD described family time was the most frequently reported by both patients and and friends as the main support for treatment workload [41]. healthcare professionals [41, 89, 96, 99, 123, 128, 130]. In However, the obstructive behaviours of some families were T2DM, some healthcare professionals reported not being barriers to SM [96, 123, 124, 130, 141]. Social relationships able to directly address patients’ broader psychosocial SM influenced the perceptions of patients with obesity [142]. because of a lack of experience or training in effective com- In HF and COPD, informal caregivers reported perceiv- munication, counselling, goal setting, and shared decision ing insufficient social support [36, 143, 144]. This theme making [57, 99]. In obesity, some healthcare professionals included two subthemes: informal caregivers’ burden and reported feeling frustrated with the scarcity of weight loss patient–informal caregiver partnership. alternatives [81, 152]. In COPD, others stated that they pre- Informal Caregivers’ Burden Most informal caregivers of ferred to wait for patients to ask questions [108]. In HF, patients with COPD [41, 43, 44, 145] or HF [36, 143, 144, for some healthcare professionals, contemplating questions 146, 147] considered their role to be challenging and bur- was challenging because they felt patients were distracted densome, affectively and cognitively demanding, and involv- and unable to pay attention [112]. This theme included two ing feelings of anxiety, fear, loss of control, sense of duty, subthemes: perceived quality of care and visits or contacts loss of intimacy, social isolation, declining energy levels, with healthcare professionals. and adverse effects on quality of life. Informal caregivers Perceived Quality of Care In T2DM and COPD, most described undergoing a significant role change, with more patients felt the information provided during visits was domestic tasks and less personal time [36]. Despite the dif- often insufficiently explained [41, 106]. Informal caregiv- ficulties experienced, they recognised their role as rewarding ers also found that information was often inadequate [36]. and reported having increased satisfaction and self-esteem, Most patients with obesity were dissatisfied with healthcare a sense of solidarity, and experiencing positive effects on professionals’ management of the disease and their profes- family relationships [36, 146–148]. sional knowledge [89]. Patients with COPD noted that some Patient–Informal Caregiver Partnership Positive care encounters with generalist healthcare professionals led to partnerships contributed to SM and included shared activi- delays in accessing specialist care [41]. Similarly, in HF, ties in T2DM [106, 141] and HF [36, 119, 120, 140]. some patients expressed dissatisfaction with the ability of Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 727 healthcare professionals to deal with the broad spectrum of worsening disease [53]. In T2DM [54, 57, 78, 82], HF [53], symptoms and complex medication regimens [86]. and obesity [88], some patients, despite having adequate Visits or Contacts with Healthcare Professionals In obe- knowledge or information, reported that it was difficult to sity, women with a high body mass index were more likely to apply in practice or to reconcile with other advice. Knowl- delay or cancel appointments because of embarrassment or edge gaps should ideally be addressed at each patient’s pace; other concerns [89]. Lack of confidence in community-based for example, some patients reported conflict between want- services could lead some patients with COPD to seek hospi- ing information and fear of diminishing hope in COPD [42, tal admission [43]. Patients with COPD experienced relief 98, 150] and HF [112]. from the demands of SM when hospitalised [41]. However, In HF and COPD, informal caregivers experienced ambi- others considered the hospital stay to be a chaotic, confus- guity and uncertainty in their role [36, 59, 117, 143, 151]. ing, and disruptive experience [41]. Most had no formal care training and devised personal strat- egies [36, 144]. In T2DM, some healthcare professionals 3.2.1.2 Factors that Influenced Self‑Management Access also reported that remaining aware of changing recommen- to Healthcare Factors that restricted timely access to health- dations [93] or methods to help patients to manage insulin care services were reported across the four chronic diseases effectively was challenging [79]; others expressed difficulties and included the associated cost of treatment, lack of health identifying end-of-life stages in patients with COPD [43]. insurance, lack of community-based resources, distance, Healthcare professionals reported some misconceptions weather, transportation, and structural or cultural barriers about the provision of care; for instance, some did not con- [43, 72, 94, 121, 123, 130, 153, 154]. Access to a special- sider early COPD to be a fatal disease [43]. ist, nursing care, SM programmes, and alternative therapy was an essential factor for SM [54, 98, 110]. However, most 3.2.2 Experience with Self‑Management Interventions patients found it challenging to access dedicated services [48, 72, 121, 128] and perceived a lack of care coordination The SM interventions assessed by the reviews in our study at different levels [41, 86, 99, 108, 155]. included SM education programmes, physical activity pro- Cost for Patients Costs associated with treatment, grammes, weight loss interventions, telehealth interven- transport, lack of insurance, and financial instability were tions, and self-monitoring programmes. Four themes were reported as major barriers for SM and accessing healthcare identified from patients’ and caregivers’ preferences and in all chronic diseases [41, 54, 83, 96, 110, 119, 120, 122, experiences regarding SM interventions: perceived benefit 137]. Weight maintenance was affected by limited finances (importance) of the intervention, individualised care, sense and competing responsibilities [125]. However, some of community, and usability. patients were less concerned about costs than about weight loss, glycaemic control [129], and adverse events [46, 109]. 3.2.2.1 Perceived Benefit (Importance) of the Interven‑ The benefits of weight loss in obesity also came with costs tion The absence of symptoms and the perceived non- such as the time and effort needed to control weight, stress, importance of the intervention, not recognising the risk of frustration, and guilt over control failures [90]. complications, pessimistic beliefs, and negative perceptions Culturally Defined Roles and Perceptions Religious on the programme diminished SM efforts in patients with beliefs or cultural backgrounds could affect patients’ will- T2DM [54, 60, 78, 82, 153], COPD [149, 159], or HF [70, ingness to improve their health [54, 57, 83, 94, 96, 98, 110, 160]. Moreover, those who experienced adverse effects 115, 119, 122, 136, 156]. In T2DM, patients from ethnic related to SM or threats of further harm were less willing to minorities living in Western countries found it challenging continue with the type of intervention involved [54]. to follow dietary, activity, or treatment (insulin) recommen- In SM educational programmes for T2DM or COPD, dations that conflicted with their beliefs or traditions [54, most patients reported increased confidence when getting 122, 130, 135, 138, 139]. Patients from ethnic minorities prompt, tailored advice from qualified and competent health- with HF were less likely than Western patients to adhere to care professionals [41, 155, 161]. They used the information an SM programme [136]. as a motivator and supported technologies that allowed them Health Knowledge Most patients across the four chronic to receive support from healthcare teams [161]. Increased diseases felt they had limited knowledge or skills and that knowledge provided a greater sense of control [41], this reduced their capacity to engage in active SM [43, 49, increased confidence in SM intervention, improved com- 51, 54, 56, 59–61, 72–74, 78, 86, 93, 106, 109, 117, 118, munication with healthcare professionals, reduced fears of 120, 128, 153, 157]. Most patients gained knowledge from deterioration, prevented hospitalisation, improved anxiety experiences, whereas others learned from the literature and depression, and increased ability to deal with negative [123]. Patients with HF often had aetiology misconcep- emotions [132, 155]. However, some informal caregivers tions or did not perceive breathlessness as an indication of 728 E. Niño de Guzmán Quispe et al. believed that COPD SM counselling provided insufficient restricted social support and maintenance sessions, and lack practical advice [151]. of positive feedback [168]. Motivation to undertake physical activity was developed Psychological Barriers to Uptake of Self-Management from expected or experienced benefits. Patients with T2DM, Interventions In patients with T2DM, feelings of helpless- obesity, and COPD remarked on several benefits of physical ness, anger, frustration, and fear limited their participation activity and weight loss interventions, including improved in physical activity [169]. Other factors included having a disease management; increased energy, enjoyment, and poor body perception and feelings of powerlessness and sense of well-being; regaining or maintaining mobility, fit- disappointment, mainly influenced by unrealistic expecta- ness, and longevity; improved quality of life; and positive tions, in obesity [88–90, 125, 170]; anxiety about dyspnoea body image [87, 124, 126, 132, 153]. in COPD [42, 44, 73, 113, 165]; and technology anxiety in Telehealth interventions (provision of care from a dis- COPD and HF [34]. Reframing the dietary regimen made tance using communications technologies) in T2DM, weight control seem less burdensome [171]. Participating COPD, and HF were generally perceived as increasing social in a weight loss programme required inner strength, despite connectedness and enabling positive user experiences. They many patients feeling they were dealing with addiction, and were perceived as contributing to increased knowledge, trig- maintenance was a constant struggle [126]. gering actions, supporting SM, and promoting shared deci- Technological (Digital) Literacy Most healthcare profes- sion making [38, 113, 155, 158, 162, 163]. Some patients sionals and patients with T2DM [156, 164], COPD, and HF perceived this type of intervention to be as satisfactory as a [37] found telehealth to be easy to use and a non-intimi- nurse home visit [34]. However, others experienced initial dating intervention. However, some others felt uncomfort- apprehension because of their unfamiliarity with and doubts able since it often required a steep learning curve [34, 172], regarding the reliability of the technology or because of their which, in some cases, produced “technology anxiety” [34]. limited motor skills and vision [38, 163]. Others were con- In technology-assisted programmes, a lack of technical skills cerned about the loss of personal contact, increased out- and the complexity and difficulty of text messaging or edit- of-pocket costs, loss of privacy, and unavailability of some ing their data were barriers in T2DM [161] and obesity [87]. services, and preferred face-to-face communication [34, Individualised Care Across the four chronic diseases, 38, 163, 164]. For some healthcare professionals, telehealth patients valued and responded better to education and advice interventions reduced the number of emergency department tailored to their changing needs over time and to their per- visits and hospital admissions [34]. However, for others, it sonal factors [153, 155, 161, 173], but healthcare profes- represented an increase in workload [47, 113]. sionals did not always do this [95]. Patients valued being The perceptions of patients with T2DM and healthcare heard by their healthcare professionals and appreciated when professionals regarding interventions that encouraged self- they enquired about their personal circumstances [99, 155]. monitoring blood glucose were disparate. Healthcare profes- Patients with T2DM reported that self-monitoring blood glu- sionals emphasised strict control, whereas patients focused cose without tailored education was challenging [99, 150], on quality of life [77]. Most patients felt that self-monitoring and patients with diabetic foot ulcer required more holistic in COPD provided greater clinical insight with time and care [78]. Some patients with COPD preferred more instru- further education [155]. This theme was influenced by three mental support [156] and continued support from healthcare subthemes: physical activity barriers, psychological barriers professionals [168]. Patients using wearable technology for to uptake of SM interventions, and technological (digital) weight management found necessary tailoring interven- literacy. tions to be motivating [174]. In HF, some women felt that Physical Activity Barriers Physical impairments were cardio-rehabilitation programmes failed to meet their prefer- barriers to physical activity. Common physical impairments ences [137]. Some nurses in charge of patients with COPD included perceived physical state, weakness, cardiovascular perceived an absence of individualised care [44]. When endurance, frailty, range of motion, muscular strength, and exploring participants’ perceptions of culturally tailored balance in HF [42, 159, 165] and T2DM [153]. Although interventions, most reported feeling motivated, supported, most patients acknowledged the benefits of regular exercise, and empowered [138, 173]. some considered it burdensome [75, 153]. Patients’ feel- ings of being too old, having an altered body, and being 3.2.2.2 Sense of Community with Peers Across the four forced to do more than they could manage were barriers chronic diseases, online forums and self-help/support to exercise in HF [98, 137]. However, patients completing groups allowed patients to gain acceptance, with a sense SM programmes reported having more energy and requir- of community and belonging being fostered [41, 106, 112, ing assistance less often [163]. Attitudes towards pulmonary 132, 155, 163, 175]. Supportive relationships helped moti- rehabilitation varied [47, 162, 165–167]. In COPD, barriers vate attendance at programmes and promote healthy eating to exercise were symptoms that evoked anxiety and fear, and exercise [132, 175]. Some patients did not participate in Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 729 forums and preferred to keep their privacy or real-life con- 4 Discussion tacts [161]. Informal caregivers of patients with HF found support groups useful [144]. 4.1 Main Findings 3.2.2.3 Usability of Self‑Management Equipment Some In this mixed-methods scoping review of reviews, we iden- patients with T2DM reported that the equipment required tified the most relevant themes from the perspectives of for glucose monitoring was burdensome [77]. Both health- patients, informal caregivers, and healthcare profession- care professionals and patients often found foot care telem- als on the SM of chronic disease, based on 148 reviews onitoring equipment easy to use [156]. Telehealth problems exploring preferences and experiences. We identified 12 included difficulty connecting to the system, equipment main themes, of which four described the process of SM failure, loss of data, and failed transmission [34, 47, 163]. (progression of the disease, SM behaviours, social support, Patients preferred technology-assisted programmes that interaction with healthcare providers), four referred to fac- were easy to navigate and appreciated concise information tors influencing the SM process (access to healthcare, costs without medical jargon [161]. Healthcare professionals con- for patients, culturally defined roles and perceptions, and sidered that few patients could independently navigate these health knowledge), and four were specific to experiences programmes [161]. The specific design of wearable devices with SM interventions (the perceived benefit of the interven- for weight management in obesity could decrease their tion, individualised care, sense of community and usability). adoption [174]. Digital games in HF were valued for their Some themes included subthemes describing particular fea- convenience and functionality, whereas barriers included tures (e.g., weight control in SM behaviours). Most themes sensory limitations [176]. were consistently identified across the four diseases, with only a few disease-specific themes. Regarding the popula- 3.3 Identified Themes by Disease and Perspective tion included, the three perspectives were recognised for five themes only, as perspectives of informal caregivers Figure 3 presents the distribution of themes and subthemes were not identified in obesity. We categorised the themes by chronic disease and perspectives. Most themes were and subthemes in an illustrative list of SM intervention out- consistently identified across the four conditions, with only comes and/or modifiable factors that can be considered, for a few disease-specific themes. For example, fear of com- example, in the COS development process for these types plications emerged only in T2DM, and smoking behaviour of interventions. emerged only in COPD. Two themes were reported only in Regarding the nature of findings, health state utility meas- two diseases: adverse events in T2DM and COPD, and vis- ures were reported and informed the following themes: dis- its or contacts with healthcare professionals in obesity and ease progression (e.g., moderate and severe COPD exac- COPD. The three perspectives (patients, informal caregivers, erbations), fear of complications (e.g., painful diabetic and healthcare professionals) were identified in five themes: polyneuropathy), adverse events (e.g., transient nausea), and (1) mortality in HF, (2) adherence to treatment in T2DM, weight control. Non-utility measures were reported narra- and (3) interactions with healthcare professionals, (4) health tively and summarised, with qualitative results reported in knowledge, and (5) perceived benefit of the intervention in mixed-methods research synthesis and qualitative evidence COPD and HF. In contrast, for obesity, we did not identify synthesis. These findings were homogeneously distributed themes exploring the perspectives of informal caregivers. and informed all themes. 3.4 Outcomes and Modifiable Factors 4.2 Our Findings in the Context of Previous of Self‑Management Interventions Research In principle, most of the themes and subthemes identified To our knowledge, this is the first mixed-methods scoping can be measured and represent potential outcomes of SM review of reviews exploring and summarising the prefer- interventions (e.g., adherence to treatment). Other themes ences and experiences of patients and their caregivers with are more likely to be considered modifiable barriers or facili- SM for the four selected chronic diseases. Other overviews tators (e.g., access to healthcare). Finally, a third group can that helped characterise the experiences or preferences of be conceived as both outcomes and modifiable factors since patients with other chronic diseases were diverse in length some SM interventions are also aimed at improving these and depth of scope [177–180]. For example, whereas factors (e.g., health knowledge) (Table 2). some focused only on SM interventions and included only 730 E. Niño de Guzmán Quispe et al. Fig. 3  Identified themes by disease and perspective. Col- oured cells are themes (rows) in a specific disease (columns) with available data. White cells represent the absence of data for a particular theme/disease. The included perspectives were obtained from patients ( ), informal caregivers ( ) or healthcare professionals ( ). COPD chronic obstructive pulmonary disease, HF heart failure, T2DM type 2 diabetes mellitus Table 2  Outcomes and modifiable factors of self-management interventions Outcomes of SM interventions Modifiable factors of SM interventions Both outcomes and modifiable factors of SM interventions Adherence to treatment Access to healthcare Adverse events Help or health-seeking behaviour Culturally defined roles and perceptions Complications Informal caregivers’ burden Cost for patients Health knowledge Mortality Individualised care Perceived quality of care Patient–informal caregiver partnership Physical functioning Perceived benefit (importance) of the intervention Self-management behaviours Physical activity barriers Smoking behaviours Progression of the disease Visits or contacts with healthcare professionals Psychological barriers to SM interventions uptake Weight control Psychological distress and stigma Sense of community with peers Social support (family and friends) Technological (digital) literacy Treatment burden Usability of SM equipment SM self-management Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 731 qualitative evidence for specific conditions, such as stroke symptoms and of dying prematurely and uncertainty about [179], rheumatic diseases, cancer, and fibromyalgia [177], the future [36, 44, 56, 73, 75]); (4) consequences (e.g., some others explored health utilities in oncology [178] or focused patients did not recognise the risk of complications and had specifically on a particular aspect such as chronic non-malig- pessimistic beliefs and negative perceptions [54, 60, 70, nant pain [180]. Themes describing the perceived support 78, 82, 149, 153, 159, 160]); and (5) controllability (e.g., from family or friends, the perceived quality of care, and patients and informal caregivers reported that it could be relationships with healthcare professionals from our scoping challenging to balance daily life activities with the treatment review were consistently identified in these overviews and workload [41] or found barriers to understanding and adher- recognised as important factors for SM in chronic diseases ing to treatment regimens [109]). [177, 179, 180]. Pearce et al. [179] described the impact The variable and sometimes opposing views reported on stroke patients’ self-image and the varying needs for within patients’ and caregivers’ experiences with SM were SM support across the condition trajectory. Likewise, our also aligned with the “shifting perspectives model of chronic findings identified patients’ conflicted views regarding their illness,” which states that living with a chronic disease is diagnosis [39], the process of accepting a new identity [106], an ongoing and continually shifting process [183]. Patients’ the progression of the disease and the burden of physical perspectives of their disease reflect their needs and situations limitations [42, 153, 159, 165] or psychological distress [40, in a particular moment. Across the four chronic diseases, 41, 51, 54, 56, 59, 61, 74–98]. Toye et al. [180] described most patients recognised having limited knowledge [43, 49, how patients with chronic pain tended to perceive their life 51, 54, 56, 59–61, 72–74, 78, 86, 93, 106, 109, 117, 118, as “impoverished and confined” and as being in a “constant 120, 128, 153, 157], with most reporting that they learned battle against their body”. Similarly, our findings identified from their own experiences [41, 73, 92, 112, 123] or with a risk of isolation for some patients because of the burden the help of other stakeholders [41, 155, 161]. Throughout of symptoms [41, 50, 56, 74], the physical limitations as a this process, patients and caregivers learned and developed consequence of disease progression [35, 42, 43, 49, 51, 52, SM behaviours [36, 144], such as help-seeking behaviour 54, 55, 61, 72, 73] and complications [62, 63, 78, 102–104], or adherence to treatment with different engagement stages. and the impact of perceived or experienced stigma [37, 41, This process was particularly challenging since adherence 81, 88, 89, 91, 100]. to SM is complex; it refers not only to medicines but also One overview of qualitative reviews also explored mostly to lifestyle behaviours [40]. Patients and their car- patients’ and caregivers’ experiences of care with chronic egivers need to learn to live with the disease, finding a bal- diseases and included two of our selected diseases (HF and ance between symptom burden [42, 43, 49, 51, 52, 55, 72, COPD) [181]. Most of our themes resonated with their find- 73], the emotional distress of having a chronic disease [40, ings, especially those describing “the experience of SM” and 41, 51, 54, 56, 59, 61, 74–98], and—in some cases—the “factors that influence SM.” They reported that patients’ and stigma they perceive and experience [37, 41, 81, 88, 89, caregivers’ behaviours in chronic healthcare and decision- 91, 100]. making processes were influenced by their characteristics, Another model that could help to explain our findings the type of patient–caregiver interaction, the healthcare sys- is the ‘integrative model of behaviour prediction’ [184], tem, and their resilience with challenging situations in the which predicts that people act on their intentions when they disease trajectory [181]. have the necessary skills and when environmental factors Our findings are aligned with some theoretical frame- do not impede behavioural performance. More specifically, works developed to explain chronic healthcare and guide this model describes that intention to perform a behaviour behavioural interventions. The ‘common sense model of follows reasonably (but not necessarily rationally) from self-regulation of health and illness’ states that individu- specific beliefs that patients hold about the behaviour. The als form common-sense representations of illnesses that factors that could influence the process of SM were repeat- guide how patients cope with the disease’s challenges [182]. edly described across the four chronic diseases and included Across the four chronic diseases, our findings include some (1) access to healthcare, (2) cost for patients, (3) cultur- aspects of the five dimensions that determine illness rep- ally defined roles and perceptions (more relevant in ethnic resentations [182]: (1) identity (e.g., patients with COPD minorities), and (4) health knowledge, reported as limiting described their disease as a “roller coaster experience” patients’ and caregivers’ capacity to engage in (or provide) [42–44] and patients with T2DM had ambivalent feelings adequate SM strategies. Moreover, the perceived benefit regarding the diagnosis [39]); (2) cause (e.g., patients with from or importance of the SM interventions might also be HF often had aetiology misconceptions or did not perceive influenced by (1) physical activity barriers, (2) psychologi- breathlessness as an indication of worsening [53]); (3) time- cal barriers to SM uptake, and (3) technological (digital) line (e.g., in T2DM, COPD, and HF, patients and informal literacy. caregivers often recognised feeling a fear of worsening of 732 E. Niño de Guzmán Quispe et al. Finally, the ‘self-determination theory’ (macro-the- 4.3 Strengths and Limitations ory of human motivation, personality development, and well-being) suggests a set of primary and universal psy- Our study has several strengths. The first was our broad eli- chological needs, including autonomy, competence, and gibility criteria concerning the phenomena of interest and relatedness [185]. This theory outlines the process of the design and methods of included studies. The scope of self-regulation, describing how people internalise social reviews ranged from the experience of diabetes manage- values and extrinsic contingencies, thereby moving from ment in general [57] to more specific topics, such as the controlled to autonomously motivated behaviours that use of telehealth in patients with diabetic foot ulcer [156]. align with personal values and goals [185]. Our findings Quantitative and qualitative findings helped to configure the reflect some mechanisms that patients use to change their impact of specific outcomes from the patient’s perspective. behaviours, such as (1) competence (e.g., in COPD and For example, utility estimates reported for dyspnoea and HF, patients gain expertise about their body responses, its progression showed an ascending effect consistent with which helps them adopt a regulatory role and adjust their its severity [46]. When explored through patients’ experi- lifestyle [41, 73, 92, 112]); (2) autonomy (e.g., in COPD, ences, dyspnoea was the most prominent symptom in the adjustments or behaviour modifications were sometimes “roller coaster” experience of having COPD [42, 44, 45]. driven by patients’ motivation to prevent exacerbation [45, Our methods included a sensitive search strategy using a 73, 74] and physical activity motivation was driven by the filter designed explicitly for values and preferences studies expected or experienced benefits [87, 124, 126, 132, 153]), [28], including additional terms related to qualitative meth- and (3) relatedness (e.g., patients from ethnic minorities ods to enhance the sensitivity of qualitative reviews. We living in Western countries found SM recommendations also sought to describe and summarise themes related to challenging when they conflicted with their beliefs or tra- the outcomes of SM interventions for four chronic diseases ditions [54, 122, 130, 135, 138, 139]). based on different stakeholder perspectives (patients, infor- One consistent finding across the four chronic diseases mal caregivers, and healthcare professionals), helping to bet- was the perception that high-quality interactions between ter characterise experiences with SM. For example, informal patients and healthcare professionals facilitated positive SM caregivers described their experiences as challenging with behaviours. Other reviews also highlighted that patients need a potentially negative impact on their quality of life [43, 44, their concerns, fears, and feelings to be acknowledged and 145–147], whereas patients recognised the caregiver’s role integrated into the SM process [186, 187]. However, our as fundamental for achieving SM goals [119, 120, 140]. findings reflect that the traditional didactic approach was Our mixed-methods scoping review of reviews also has still more frequently experienced by patients and informal some limitations. By including only reviews, we applied a caregivers than collaborative patient–provider interactions. relatively novel methodology [16]. By limiting our search Moreover, the quality of care was generally perceived to to only English-language publications, we may have missed be insufficient or unsatisfactory, with several complaints some studies in specific populations. The experience of codi- reported (e.g., the lack of coordination of services or inad- fying themes was methodologically challenging because of equate treatment provision). the diversity of synthesis and reporting methods used in the In the context of the COMPAR-EU project, themes included reviews. However, despite this variability, the iden- from this scoping review helped inform COS selection tified themes were generally consistent. For example, the for the four chronic diseases. The COS development pro- influence of social networks, perceived social support, and cess included, as a first step, developing an initial list marital status on self-care was identified in reviews that used of outcomes derived mainly from systematic reviews of quite different methods such as meta-ethnography [110], the effectiveness of SM interventions. In a second step, mixed-methods research synthesis [139], thematic analy- a panel of patients ranked the importance of outcomes sis [60], or meta-aggregation [93]. Finally, screening and through a two-round Delphi process. We designed four extraction processes were not conducted by two reviewers infographics based on the initial list of outcomes. We independently, and applying a descriptive approach for syn- found corresponding related information in our scoping thesis limited our ability to provide a more in-depth analysis review, showing a summary of findings and associated [33]. graphics by each outcome. The results of the Delphi pro- cess and the infographics were sent to participants before 4.4 Implications for Practice and Research the final consensus meeting for outcomes selection. Dur- ing this meeting, the infographics were used as needed. This mixed-methods scoping review identified a set of The resulting COS and the information provided in the main themes that can guide policy makers, healthcare pro- infographics are published elsewhere [188]. fessionals, and patient organisations to outline the design Patients’ and Caregivers’ Perspectives on Self-Management Interventions for Chronic Diseases 733 of SM interventions tailored to the needs of the primary Declarations stakeholders. They can also help with the design of imple- mentation strategies to support both patients and caregivers Funding This work was supported by the European Union’s Hori- in specific areas of SM and healthcare, considering under- zon 2020 research and innovation programme [754936]. ENDG was funded by a Rio Hortega contract from the Instituto de Salud Carlos explored areas, such as the psychological distress faced by III [CM17/00199]. LMG is funded by a Miguel Servet contract from some healthcare professionals during the SM care process the Instituto de Salud Carlos III [CP18/00007]. The funders had no [81, 93, 152]. Since these themes represent relevant areas role in study design, data collection and analysis, decision to publish, identified mainly from the patient’s perspective, our findings or preparation of the manuscript. could also help select quality indicators to evaluate SM sup- Conflict of interest Ena Niño de Guzmán Quispe, Laura Martínez port programmes. Moreover, the selected themes may help García, Carola Orrego Villagrán, Monique Heijmans, Rosa Sunol, Da- to delineate other COS for related interventions or similar vid Fraile-Navarro, Javier Pérez-Bracchiglione, Lyudmil Ninov, Karla populations. Our findings will also inform the development Salas-Gama, Andrés Viteri García, and Pablo Alonso-Coello have no of decision-making tools for the COMPAR-EU project [7], conflicts of interest that are directly relevant to the content of this ar- ticle. including evidence for decision frameworks to develop rec- ommendations and decision aids. Ethics approval Ethical approval was obtained from the Clinical Further research is needed in areas in which we found Research Ethics Committee of the Avedis Donabedian Research Insti- scarce evidence, including (1) an overall approach to address tute, the coordinator partner of the COMPAR-EU Project (EU 754936), and the University Institute for Primary Care Research (IDIAP Jordi the views of healthcare professionals and informal caregiv- Gol) and was signed on March 2018. ers regarding SM and (2) a more specific approach to explore the preferences and experiences of patients with obesity or Consent to participate Not applicable. caregivers’ perspectives in T2DM and obesity. In this mixed- Consent for publication Not applicable. methods scoping review, we identified the most relevant themes regarding SM from the perspectives of patients, Data availability and materials All the findings from the available data informal caregivers, and healthcare professionals regarding have been published in this manuscript. the process of SM and SM interventions. In a second stage Author contributions ENDG, LMG, and PAC made substantial con- within COMPAR-EU, we are conducting four overviews tributions to the conception and design of the study. ENDG, DF, JP, (one per each chronic disease) to offer a more detailed and KS, and AVG collected all relevant data related to the studies. ENDG, in-depth analysis, better characterising how the different LMG, RS, MH, COV, DF, JP, LN, KS, AVG, and PAC discussed and populations value the importance of the different outcomes interpreted the results. ENDG, LMG, and PAC wrote the first draft of the manuscript. All authors revised the manuscript critically for of SM interventions and identifying factors that potentially important intellectual content and approved the final version submitted. affect the acceptability and feasibility of SM interventions [189]. Open Access This article is licensed under a Creative Commons Attri- bution-NonCommercial 4.0 International License, which permits any non-commercial use, sharing, adaptation, distribution and reproduction 5 Conclusion in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Com- mons licence, and indicate if changes were made. The images or other The process of SM shaped the perspectives of patients and third party material in this article are included in the article’s Creative their caregivers on SM interventions. Their perspectives Commons licence, unless indicated otherwise in a credit line to the were influenced by the perceived benefit of the interven- material. If material is not included in the article’s Creative Commons tion, the sense of community, the usability of the interven- licence and your intended use is not permitted by statutory regula- tion or exceeds the permitted use, you will need to obtain permission tion, and the level of individualised care. Our findings can directly from the copyright holder. To view a copy of this licence, visit inform the selection of patient-important outcomes and http://​creat​iveco​mmons.​org/​licen​ses/​by-​nc/4.​0/. decision-making processes, including the formulation of recommendations and the design and implementation of SM interventions. References Acknowledgements The authors thank Ivan Solà for his invaluable 1. Bodenheimer T, Lorig K, Holman H, Grumbach K. Patient help in the design of the search strategy. 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Authors and Affiliations Ena Niño de Guzmán Quispe1 · Laura Martínez García1,2 · Carola Orrego Villagrán3,4,5 · Monique Heijmans6 · Rosa Sunol3,4,5 · David Fraile‑Navarro7,8 · Javier Pérez‑Bracchiglione9 · Lyudmil Ninov10 · Karla Salas‑Gama11,12 · Andrés Viteri García13,14 · Pablo Alonso‑Coello1,2 1 8 Iberoamerican Cochrane Centre (IbCC)-Sant Pau Madrid Primary Health Care Service, Madrid, Spain Biomedical Research Institute (IIB-Sant Pau), C/ 9 Interdisciplinary Centre for Health Studies (CIESAL), Sant Antoni Maria Claret 167. Pabellón 18, Planta 0, Universidad de Valparaíso, Valparaíso, Chile 08025 Barcelona, Spain 10 2 European Patients’ Forum, Brussels, Belgium CIBER de Epidemiología y Salud Pública (CIBERESP), 11 Madrid, Spain Health Services Research Group, Institut de Recerca Vall 3 d’Hebron Hospital, Barcelona, Spain Avedis Donabedian Research Institute (FAD), Barcelona, 12 Spain Vall d’Hebron University Hospital, Barcelona, Spain 4 13 Red de Investigación en Servicios de Salud en Enfermedades Centro de Investigación de Salud Pública y Epidemiología Crónicas (REDISSEC), Madrid, Spain Clínica (CISPEC), Universidad UTE, Quito, Ecuador 5 14 Universitat Autònoma de Barcelona, Barcelona, Spain Centro Asociado Cochrane de Ecuador, Universidad UTE, 6 Quito, Ecuador Netherlands Institute for Health Services Research (Nivel), Utrecht, The Netherlands 7 Australian Institute of Health Innovation, Macquarie University, Sydney, Australia