Table 3 Sensitising concepts, theory constructs and examples from the literature

Status passage

SR

Status passage

‘Several studies described adjustment to living with CHF as a process. Stull et al. described the entire process of living with CHF as a process of searching for meaning and identity, which started from a ‘crisis event’, followed by phases of ‘diagnosis’, ‘patient’s responses to the diagnosis’, ‘acceptance and adjustment’ and ‘getting on with life’. The ‘crisis event’ described the patient’s perception of the initial manifestation of CHF that placed them in a new and uncertain situation. In the phase of ‘diagnosis’, patients with CHF tried to make sense of their situations by attaching meanings to the symptoms. In this phase, patients relied on prior experiences with similar situations to make sense of the cues in their current situation. The process of searching for new meaning was, however, greatly hindered by fluctuations in their debilitating symptoms, the concomitant hospital admissions, the disruption to their usual role in life and identity, and the limited treatment options’ [40].

Available agency

ES

Capacity

‘Action-based strategies also included enlisting the help of caregivers for assistance with self-care activities. Caregiver assistance ranged from simple reminding to taking over some of the responsibilities such as organizing medications, buying groceries and preparing meals according to dietary guidelines, monitoring symptoms, and navigating the healthcare system as needed. Although some patients felt they did not want to be a burden to caregivers, at the same time they recognized their inability to manage self-care activities without caregiver help’ [104].

Help-seeking

ES, SR

Contribution

ES

Informal/Unwritten contracts

SR, ES

Accountability

‘Individuals who were able to assimilate formal knowledge accurately and adapt their lives accordingly, while recognising the uncertainty of HF. Advanced self-managers tend to be better educated than those who adopted the above approaches. A distinguishing feature of advanced managers was their understanding of and willingness to be constantly vigilant about their physical and mental state and desire to be in control of their management. They were also able to adapt their medication as they perceived necessary and were keen to manage their own symptoms or to improve participation in social activities. Advanced self-managers also recognised the importance of family members and were mindful that decisions of care also impacted on them’. [59].

Hierarchical relations

SR

Treatment workload

SR

Judgments about the competence of self

ES

Medical dominance

ES, SR

Process limiting factors

‘A number of other barriers were identified as factors hindering adherence, including patient knowledge deficits, physical limitations, financial hardship, low motivation or negative experiences or beliefs toward treatment, limited self-efficacy, and difficulty coping. Follow-up attendance was limited by patients’ difficulty getting to the hospital, including the cost of transportation, problems with public transit, intolerance of crowds, and the inability to walk long required distances’ [78].

‘Financial challenges were consistently reported by patients to be a barrier to self-care, particularly in relation to diet and medication management. High costs of medications and healthy foods competed with other life demands, at times straining patients’ ability to meet even their basic needs. Patients could engage in a trade-off where the needs and costs of daily life were prioritized over adherence to self-care, requiring them to make difficult financial and health decisions without health professional advice. For example, patients chose to fill certain prescriptions over others or to skip or reduce their doses of medications. This was particularly true for patients who required insurance to access treatment, as this quote so eloquently captures: “The doctor gives you 6 prescriptions and Medicaid only pays for 3, so what happens with the other 3? In that case I just don’t buy them” [58].

Gatekeeping and rationing

ES, SR

Disruption

ES

Burnout

ES

Structurally induced non-adherence

SR

Diffusion of responsibility

ES

Negotiated Obligations

‘Studies also reported poor and inappropriate care practice, in terms of health professionals not engaging patients in their care and decision making, patients not receiving sufficient information about diagnosis or condition management, insensitive approaches to female patient needs, and improper medication scheduling. Other examples of poor care practice included health providers creating unnecessary fears, not tending to immediate needs such as toileting assistance and ignoring patients. When patients experienced poor quality of care they reported lack of confidence in care providers, confusion, delays in seeking care and were deterred from maintaining positive self-care practices. Naturally, prior negative experience of accessing services discouraged patients from seeking timely help’ [67].

‘Although effective communication with health professionals was seen to be a key to high quality care, patients perceived that health professionals exercised ‘information holding’. They also reported health professionals: did not listen, provided inconsistent or vague information, did not follow up and had poor communication with other health professionals. The need for better explanations of heart failure and its symptoms from professionals were widely noted. Some health professionals recognized the need for good communication with patients, but were constrained by lack of time in consultations. Patients could perceive that professionals had exclusive responsibility for management/symptom monitoring or that responsibility was shared’ [49].

Opportunity structures

Agreeing expectations

ES, SR

Agreements about collaboration

ES, SR

Social Skill

SR

Competency assessment

ES

Cognitive authority

‘Patients often feel disempowered, finding clinicians unapproachable and reluctant to give information: they may see questions about prognosis as taboo be reluctant to ask questions, especially if older, be unsure what questions to ask, be afraid to ‘put the doctor on the spot’, and fear being seen as difficult, demanding, or complaining. Some hesitate to visit a doctor, fearing unwelcome and unwanted hospital admission, or find themselves too fatigued and unwell to be able to concentrate and absorb information’ [42].

Self-surveillance

ES

Patients reject medical authority

ES

Calculation of options

ES, SR

Judgments about the competence of others

ES, SR

Patients call for specialist not generalist help

ES

Experienced control

‘Patients losing a sense of control over their illness were reported as connecting the loss of control with unpredictable deterioration in health, high blood pressure, shortness of breath and sleeplessness and over their life in terms of loss of independence, financial security and participation in CHF management decision-making . Losing this sense of control, or ‘feeling imprisoned in illness’, as Ekman described, was also associated with various restrictions imposed on their lives due to the need to adhere to disease management, resulting in feelings of helplessness, powerlessness and that premature death was unavoidable’ [67].

Rational non-adherence

SR

Adaptive work

ES, SR