Table 1 Relevance and potential generic use of grounded theories I-IV for understanding and intervening in (dis)empowerment across long-term health conditions

Participants across the three GTs: 11 healthcare user-nurse dyads

66 qualitative data sources: Observations of admission interviews, collegial discussions, and discharge interviews

Semi-structured interviews with healthcare users and subsequently with nurses immediately after discharge

Semi-structured interviews with healthcare users again six months after discharge

Patterns revealed by GT I-III directed the development of Guided Self-Determination (GSD) as a supplementary decision-making and problem-solving method through participatory action research [32] involving 25 healthcare users and 12 nurses. GSD was qualitatively demonstrated to change the patterns in an intervention study [18] matching participants and data sources from GT I-III

The same patterns were recognised by researchers and clinicians in other areas of long-term health conditions (LTHCs), thereby demonstrating GSD’s ability to change the patterns across LTHCs

Impact of GSD tested in: 12 RCTs, 26 qualitative studies, 3 mixed methods studies, 1 non-randomized feasibility study, and 1 inspired by participatory implementation, identified in an integrative review [19]

Additionally, 2 qualitative studies [37, 38], 1 sequential two-phase multiple method feasibility study [39]

LTHCs: Diabetes, neonatal care, schizophrenia, intensive care survivors, gynaecologic cancer, breast cancer, acute stroke, chronic pain, ADHD, eating disorders, end-stage kidney disease, endometriosis

Settings: Hospital wards, outpatient clinics, assertive outreach teams, intensive care units, municipal rehabilitation units, dialysis units, pain centres, in-home care, general practices, primary care, online platform, community care

GT-IV [33] was developed as a pragmatic GT comparing examples from 20 intervention studies using GSD as a supplementary method across 10 various LTHCs. The theory explains the power of person-specific evidence created through empowering insight rather than traditional narrow disease-specific knowledge or unverified assumptions about each person in decision-making and problem-solving

Moreover, the theory showed the ability of person-specific evidence to mobilize relational capacities in everyone involved in an individual healthcare user’s situation

LTHCs: Diabetes, diabetes and comorbid eating disorder, neonatal care, schizophrenia, gynaecologic cancer, breast cancer, infertility, ADHD, COPD, end-stage kidney disease, endometriosis, multiple psychiatric conditions

Settings: Hospital wards, outpatient clinics, intensive care units, assertive outreach teams, municipal rehabilitation units, dialysis units, general practices

GT-I [6] explains patterns related to a life-versus-disease conflict between healthcare users and their healthcare provider. In traditional interactions, this conflict remains mostly unchanged—or even deadlocked—instead of being resolved

GT-II [16] distinguishes between three kinds of relationships between healthcare users and their healthcare provider

It explains why a relationship characterized by mutuality makes room for releasing a potential for change, in contrast to typical relationship types characterized by provider dominance or blurred sympathy

GT-III [17] developed a model distinguishing between one focused and four de-focused communication zones, as well as four depths of reflection. The theory explains the necessity of reaching focused communication and deep mutual reflection to establish mutual understanding in the shared decision-making and problem-solving process