Palliative care aims to enhance the quality of life for patients and families experiencing serious health-related suffering.¹ Nevertheless, the integration of palliative care into primary health care has been particularly slow in low- and middle-income countries (LMICs).² This is especially concerning given the rising prevalence of non-communicable diseases (NCDs) within these regions, which are associated with reduced quality of life over the trajectory of chronic disease and increased use of emergency services because of uncontrolled symptoms.^3,4,5 Three-quarters of patients in need of palliative care globally live in LMICs; the majority of these have NCDs and less than 10% receive the palliative care they need.⁶ A significant challenge in LMICs is the limited availability of palliative care that is integrated across various healthcare disciplines. Alongside clinical care and support, there is a need and opportunity to support patient self-efficacy⁷ and to reduce reliance on the healthcare system, particularly emergency care, for symptom management. Palliative rehabilitation encompasses interventions aimed at managing symptoms, enhancing comfort and promoting independence for as long as possible.¹ Reviews of the evidence for self-management interventions have shown their benefit in improving self-efficacy, health-related quality of life, depression and anxiety for patients with chronic kidney disease,⁸ and in improving dyspnoea, health-related quality of life and reducing hospital admissions in patients with chronic obstructive pulmonary disease (COPD).⁹ Although rehabilitation services are inherently aligned with the objectives of palliative care, there is a notable lack of integrated practice between these fields in LMICs, and particularly limited access to these professional services for symptom self-management at the primary care and community level.⁵ This gap highlights an urgent need to identify effective rehabilitation strategies which can be employed within palliative care provision to improve the quality of life for patients with non-communicable illnesses.

This approach necessitates flexibility and the continual adaptation of care goals in response to changes in a patient’s condition. Traditionally, palliative rehabilitation is delivered by qualified professionals such as occupational therapists, physiotherapists, speech and language therapists, and dietitians. Common symptoms managed within palliative rehabilitation include fatigue, dyspnoea and pain. However, in LMICs, these skilled professionals are scarce, particularly at the community level. As a result, alternative models of delivery must be developed to ensure that patients and their families have access to rehabilitation that supports symptom management. A definition of symptom self-management interventions is provided by Jonkman et al.:¹⁰

This scoping review is part of a wider project to develop and investigate the acceptability and feasibility of symptom self-management intervention for pain, breathlessness and fatigue for people living with chronic organ failure in South Africa. As part of the intervention development, this review aimed to identify the active components of non-pharmacological interventions for symptom self-management for patients with advanced non-malignant chronic lung, heart, renal and liver disease, specifically for the symptoms of breathlessness, pain and fatigue. Additional objectives included identifying the barriers to and facilitators of symptom self-management, and the contextual factors influencing symptom self-management in LMICs.

A scoping review utilising two searches was conducted according to guidance by Peters et al.¹¹ The first search identified systematic reviews which document the active components of interventions to support symptom self-management for the symptoms of breathlessness, pain and fatigue in advanced chronic lung, heart, renal and liver disease. The second search identified primary studies conducted in LMICs in order to identify specific contextual facilitators and barriers to symptom self-management in LMICs. We defined the term ‘advanced non-malignant chronic disease’ as referring to advanced disease which is deteriorating despite the best available medical management.^{12,13,14,15,16,17,18,19,20} Eligibility criteria are detailed in Table 1.

In total, 31 articles were included across the two searches. Search one identified 174 articles after deduplication, and 21 systematic reviews met the eligibility criteria (Figure 1). Search two (Figure 2) yielded 3740 articles after deduplication, with 10 primary studies meeting the eligibility criteria. Figure 1 presents the PRISMA flow chart for search one and Figure 2 for search two.

This study details symptom self-management interventions for pain, shortness of breath and fatigue for patients with chronic lung, heart and kidney disease. The patient populations most commonly investigated in both searches were individuals with chronic lung diseases, specifically COPD, followed by chronic heart disease patients, where heart failure and coronary artery disease populations were most common. One systematic review⁴¹ and one primary LMIC study⁵⁵ included interventions for individuals with chronic renal diseases with all undergoing haemodialysis at the time of intervention. These articles do not represent the large group of patients in LMICs who need but are not able to access dialysis for varying reasons.^62,63

Because of the global increase in prevalence of chronic conditions, supporting self-management will increasingly become a core response of healthcare systems²⁸ to improve patients’ quality of life.⁶⁴ A tertiary systematic review of health service components for patients with advanced progressive chronic conditions showed that patient and family education and patient self-management are common components of effective services.⁶⁵ Symptom self-management cannot be the responsibility of the person living with the chronic disease alone, but requires ongoing engagement between the patient, family caregivers, the healthcare professionals (HCPs) and the community-based care team.^{28,32,46,55,66} The PRISMS self-management taxonomy allows for the conceptualisation of self-management support and enables improved reporting of interventions and a clearer guide for the recommended components to optimise patient care.²⁸ Interventions need not include all components, but consideration should be given to all the domains of self-management, and application should be contextualised and individualised as much as possible so as to tailor the intervention in a person-centred manner.²⁸

The three most commonly included taxonomy components, A1 (information-giving), A11 (training/rehearsal for practical self-management activities) and A14 (lifestyle advice and support), are a low-resource way of supporting symptom self-management. The most common active PRISMS intervention taxonomy component²⁸ identified was education (or information) about the condition and/or its management (A1). Education with the provision of information is a necessary starting point for any patient and family member to be able to increase their knowledge and understanding to start and then maintain self-management of their illness and their consequent symptoms.⁶⁷ Information given, understood and retained by patients and family members is a part of the process of enabling self-determination⁶⁸ and self-efficacy.⁷

Our findings show that information-giving and education can be approached in a variety of ways, all of which need consideration for relevance, acceptability and accessibility for the population and context concerned.⁶⁷ This is supported by the findings of a systematic review of self-management interventions specifically conducted in primary care settings.⁶⁴ Disease and management understanding also supports the patient’s understanding of their prognosis.⁶⁸ A recent systematic review of interventions to improve patient prognostic understanding in advanced disease shows that such interventions that are specific for decision support, communication or a palliative approach appear to support appropriate prognostic understanding, but that this is a challenging outcome to achieve.⁶⁹

Bayly et al.⁶⁵ recommend that collaborative patient care that considers patients’ needs and not just diagnosis and management of acute events is supportive of effective care for patients with progressive disease. This should be considered in conjunction with a longer-term approach to supporting the implementation of symptom self-management that actively includes the patient and family and actively plans follow-up.⁶⁵ Support for patients to learn and then develop skills in self-management can enhance self-efficacy.⁶⁴ Repetition of information and assisting patients to understand how to embed self-management activities within day-to-day activities are necessary, and this underpins the importance of the need for supportive training and rehearsal of the taught self-management strategies.^28,64 Healthcare professional roles in the process should include regular review^9,45,49 and support for patient-directed goal setting^31,33,37 with the collaborative action plans.^{9,28,33,48,52,58,64} The practical training and development of skills as part of symptom self-management requires active engagement from the healthcare provider.^{33,48,51,56,58}

In terms of intervention implementation facilitators, there was no facilitator more common than another in either search. However, an underlying theme was that technology improved accessibility to the interventions and also adherence. Our findings show that patient adherence to self-management was noted as an important barrier. Understanding the challenges and reasons for limited adherence was less clear, although disease and management understanding are linked to adherence to medication,^23,34 and self-care education has been shown to increase adherence to self-management.⁷⁰ Patients need to feel motivated to engage and take responsibility for decision-making and their self-care.⁷¹ Motivational interviewing is a strategy in supporting self-efficacy towards effective symptom self-management,^33,46 as are cognitive behavioural interventions.⁴⁷ However, these formal approaches may be considered resource-intensive options, which may not be widely accessible in LMIC primary care settings. Further assessment is required of the access to resource-appropriate symptom self-management support for all those who require such support in primary care and community settings in LMICs. Electronic messaging, education on condition and light exercise were identified as facilitators to effective self-management of the symptoms. In the LMIC context, the latter two are practical and implementation may be set in motion through the healthcare workers, with additional training, development and support. Electronic messaging has been successfully applied,^32,44,49 but resource constraints in LMICs mean that sustainability should be considered. Hearn et al.⁷² found that the use of phone calls and short message service (SMS) messages is effective for supporting self-management and does not require smartphones. However, the benefit of smartphones for playing video instructions was found to improve quality of life for patients with malignant disease in India,⁷³ so smartphone use should not be discounted because of resource constraints.

Exercise is commonly applied as a symptom self-management intervention. While a range of exercises can be considered appropriate, single-limb exercises may not be sufficiently effective for shortness of breath or fatigue.³⁶ Findings from our review suggest that exercise needs to be appropriate for cultural, contextual and resource considerations, as well as being individualised and person-centred, with ongoing support for implementation. The delivery of exercise interventions is acceptable when delivered by physiotherapists,⁷⁴ but may be delivered by other professionals^{35,48,52,55,58} such as nurses.^34,44

Relaxation and psychological strategies are recognised as important and necessary components of symptom self-management interventions, supporting patients and families to cope practically with psychological distress.^{9,33,37,40,47,48,54,59} Relaxation techniques are considered integral to the self-management of shortness of breath in chronic disease, and include use in crisis moments.^75,76 Progressive muscle relaxation and deep breathing exercises appear to be effective in improving shortness of breath and fatigue in patients with COPD.⁵⁴

The provision of information is an effective, low-resource and potentially time-efficient strategy, with the potential for patient benefit. Interventions requiring increased resources were less common, such as the provision of equipment (A7), access to support when needed (A8) and any intervention component with time-intensive rehearsal and training. In LMIC settings, the monitoring of the condition with feedback to the patient (A5) was not included at all. Monitoring the patient and providing feedback requires sufficient HCP time, which is a limited resource. Information about available resources (A2) and access to support when needed (A8) requires HCPs to have sufficient knowledge regarding local area resources and services. Gaining this knowledge requires understanding and time investments into ensuring provisions are adequate, as well as potential financial investments in resources to improve the standard of care. This is where the importance of collaborative approaches to self-management is highlighted. Multi-disciplinary healthcare teams and community care services together can facilitate appropriate coordinated care and enhanced self-management along the life course, particularly where formal rehabilitation services are scarce.^2,5,77

Symptom self-management interventions play a significant role in reducing the prevalence and burden of physical symptoms in non-malignant conditions, improving patients’ feelings of self-efficacy and reducing dependence on health providers. This scoping review presents a practical descriptive overview of non-pharmacological symptom self-management for the common symptoms of pain, shortness of breath and fatigue as experienced by patients with non-malignant chronic respiratory, cardiac and renal disease. The categorisation of interventions according to the PRISMS taxonomy provides a classification of intervention options for researchers and clinicians. Accurate and understandable information is the basis for symptom self-management, but family involvement and support are also required to support rehearsal and application in the home. The synthesis of facilitators, barriers and LMIC setting implementation considerations highlights the importance of interventions being culturally and contextually relevant, as well as needing to be accessible for patients who experience functionally limiting symptoms in addition to geographical and financial access challenges. Interventions can be successfully applied by a diverse range of actors, including lay implementers such as health workers.