Table 2 Summary of included studies
Study details | Aim and objectives | Design and methods | Participants | Relevant findings |
|---|---|---|---|---|
[29] Mostarac et al. (2021); Canada | Understand decisions about emergency department attendance from the perspective of patients and family members; focus on understanding causes of avoidable attendances | Qualitative descriptive studya, structured interviews, qualitative content analysis | Adults (age ≥ 21 years) (n = 45) with solid (n = 37/45) and haematological (n = 8/45) cancers; most of whom (n = 30/45) had received anticancer treatment in the past 6 weeks | ED attendance was prompted by severe or unexpected symptoms, when alternative services were unavailable, or when self-management had failed. People often acted on the advice of cancer specialists and informal caregivers |
[30] Jørgensen et al.b (2021); Denmark | Understand decisions about, factors leading to, and experiences of using a specialist cancer emergency helpline from the perspectives of patients and family members | Phenomenological hermeneutic study, semi-structured interviews, qualitative content analysis | Adults (n = 12)c, most of whom had incurable cancer (n = 8/12); informal caregivers (n = 10)d, most of whom were spouses or partners (n = 8/10), were included | Unexpected symptoms prompted help-seeking, and the helpline was used to obtain reassurance when self-managing symptoms at home. Experience of previous care delivered by call handlers influenced decisions about service re-use |
[31] Kaufmann et al. (2020); United States | Examine patient perceptions of factors leading to unplanned acute care and hospital admissions; focus on understanding and preventing unnecessary acute care use | Qualitative descriptive studya, semi-structured interviews, constant comparative analysis | Adults (age ≥ 18 years) with solid cancers (n = 49), most of whom had advanced cancer (n = 27/49), and had received anticancer treatment in the past 6 months | Acute hospital care was avoided where possible. Uncontrolled symptoms and patients’ fears for their safety if they remained at home influenced the decision to seek help. Service use was often prompted following contact with patients’ cancer specialist team |
[32] Jamieson et al. (2020); United Kingdom | Describe the experiences, reporting behaviours, and management of immunotherapy-related adverse events; focus on delayed reporting and management | Mixed methods study, descriptive analysis of quantitative health record data, semi-structured interviews, content analysis | Adults with solid cancers (n = 13) who had received immunotherapy and reported symptoms of treatment toxicity to urgent and emergency care or in scheduled clinic appointments | People delayed seeking help to report symptoms in routine appointments or because symptoms were not interpreted as treatment-related or indicative of serious illness |
[33] Green et al. (2019) United Kingdom | Understand decisions about, and experiences of, attending the ED by people with palliative care needs | Qualitative descriptive studya, in-depth interviews using a narrative approach | Adults known to a specialist palliative care service (n = 7) with cancer (n = 3/7) or other long-term conditions (e.g. COPD) (n = 4/7); informal caregivers (n = 2) were included | Unclear routes to access made decision-making difficult. Knowledge of how services were organised was needed to navigate the system, and people often had multiple contacts with other services prior to attending the ED |
[34] Pedersen et al.b (2019); Denmark | Explore the meaning of responsibility to people with cancer when using a specialist cancer emergency helpline | Secondary analysis of primary study [30], qualitative descriptive approach, qualitative content analysis | Refer to Jørgensen et al. [30] | Patients used a specialist cancer emergency helpline to share the burden associated with, and feel safe when, self-managing symptoms at home. People felt responsible for being observant for, and accurately reporting, deteriorating symptoms |
[35] Chen et al. (2019); United Kingdom | Understand patient and caregiver views and experiences of cancer-related emergency admissions and inpatient care; focus on avoidable and unavoidable hospital admissions | Qualitative descriptive studya, semi-structured interviews, framework analysis | Adults with cancer (n = 20) who had received anticancer treatment, most of whom (n = 17/20) had advanced cancer; informal caregivers (n = 12) were included | People used emergency care for severe or unexpected symptoms, on the advice of cancer specialists, or when problems could not be resolved with self-management guided by professionals |
[36] Philip et al. (2018); Australia | Explore experiences and perceptions of ED use by people with advanced cancer and their informal caregivers | Cross-sectional qualitative descriptive studya, semi-structured interviews, phenomenological approach to data analysis | Adults with advanced cancer (n = 19), most of whom had solid cancers (n = 12/19); informal caregivers (n = 10), most of whom were spouses or partners (n = 6/10), were included | Decisions to use the ED were prompted by advice from specialists, symptoms which did not respond to self-management, and as a means to secure specialist inpatient care |
[37] Oakley et al. (2017); United Kingdom | Understand what factors result in delayed reporting of symptoms suggestive of neutropenic sepsis | Constructivist grounded theory study, in-depth interviews and observation, constant comparative analysis | Women with breast cancer (n = 13) who had received anticancer treatment with chemotherapy, most of whom had curable cancer (n = 9/13); informal caregivers (n = 9), most of whom were spouses or partners (n = 3/9), were included | Subconscious collusion between patients, caregivers, and clinicians contributed to delayed reporting of symptoms. Fatalism, not wishing to inconvenience helpline staff, and fear contributed to delays |
[38] Henson et al. (2016); United Kingdom | Explore decisions to use the ED from the perspectives of people with advanced cancer and their informal caregivers | Cross-sectional qualitative descriptive studya, semi-structured interviews, constant comparative analysis | Adults (age ≥ 18 years) with advanced cancer (n = 18), most of whom had solid cancers (n = 11/18); informal caregivers (n = 6), all of whom were family or close friends, were included | Difficulties accessing alternative care out of hours, anxiety regarding their cancer diagnosis, and feeling safe in hospital influenced the decision to use the ED |
[39] Karasouli et al. (2016); United Kingdom | Understand the symptom-related, psychological, and organisational factors that contributed to emergency hospital admission in people with lung cancer and COPD | Qualitative descriptive studya using critical incident technique, semi-structured interviews, thematic and cross-case analysis | Adults with advanced lung disease (n = 39), including incurable lung cancer (n = 24/39) and COPD (n = 15/39); informal caregivers (n = 20) and health professionals (n = 50) were included | People with cancer and their caregivers used previous experience to self-manage symptoms and negotiate access to care. Decisions about emergency care use were influenced by uncertainty and anxiety, and hospital admission was avoided for as long as possible |
[40] Nguyen et al. (2016); Canada | Describe clinical and demographic factors associated with ED use and explain, from the perspectives of older adults, reasons for attending the ED | Concurrent, triangulation mixed methods study, descriptive quantitative analysis of medical records, semi-structured interviews, qualitative content analysis | Older adults (age ≥ 70 years) who had received anticancer treatment (n = 11), most of whom had solid cancers (n = 9/11) and some of whom had comorbidities (n = 5/11) | People sought help when their symptoms deteriorated or were perceived as a threat to life, when other services were not available, or when their cancer specialist team could not be contacted out of hours |
[41] Clarke et al. (2015); United Kingdom | Describe the early signs and symptoms of, and the facilitators and barriers to, early help-seeking for symptoms suggestive of neutropenic sepsis | Qualitative descriptive studya, semi-structured, narrative interviews, grounded theory approach to analysis | Adults (age ≥ 18 years) with haematological cancers (n = 22) who had received chemotherapy; informal caregivers (n = 10), all of whom were spouses or partners, were included | Misinterpretation of signs and symptoms, unclear information, and denial contributed to delayed help-seeking. Informal caregivers encouraged and supported help-seeking, but attempts to access care were often confounded by non-specialists’ lack of knowledge |
[42] Adam et al. (2015); United Kingdom | Explore the views and experiences of patients and informal caregivers who used out-of-hours services for cancer-related pain | Qualitative descriptive studya, semi-structured interviews, framework analysis and inductive thematic analysis | Adults (age ≥ 18 years) with cancer (n = 11), most of whom had advanced cancer (n = 10/11); informal caregivers (n = 4) were included | The interpreted cause of the pain as well as its severity influenced the decision to contact the out-of-hours service. Informal caregivers supported and facilitated help-seeking, and previous experience influenced the decision to re-use services |
[43] Richards et al. (2011); United Kingdom | Explore decisions about and experiences of out-of-hours service use by people with advanced cancer | Qualitative descriptive studya, semi-structured interviews, constant comparative analysis | Adults with advanced cancer (n = 20)c, informal caregivers (n = 15), most of whom were spouses or partners (n = 11/15), were included | Decisions to contact the out-of-hours service were informed by self-appraisal of the legitimacy of their need for help. Relational and informational continuity was highly valued, and previous experiences influenced reselection of services |
[44] Grudzen et al. (2011); United States | Understand how and why people attend the ED for end-of-life care and patients’ perceptions of their illness and of advanced care planning | Qualitative descriptive studya, interviews, grounded theory approach to data analysis | Adults with incurable diseases (n = 13), most of whom had advanced cancer (n = 8/13) | People sought help when symptoms became severe, and help-seeking was influenced by the unavailability of alternative services and financial concerns |
[45] Smith et al. (2010); United States | Explore perceptions and experiences of ED care by people with terminal illness and their informal caregivers | Qualitative descriptive studya, semi-structured interviews, grounded theory approach to analysis | Adults with terminal illnesses (n = 14), most of whom had cancer (n = 12/14); informal caregivers (n = 7) were included | Uncertainty, anxiety, and feeling unprepared to self-manage symptoms at home influenced decisions to attend the ED towards the end of life |
[46] Worth et al. (2006); United Kingdom | Explore decisions about, and experiences of, using out-of-hours services by people with cancer, their informal caregivers, and primary care clinicians | Qualitative descriptive studya, in-depth interviews and focus groups, constant comparative analysis | Adults with advanced cancer (n = 39), informal caregivers (n = 67), and health professionals (n = 50) were included | The legitimacy of need, including concerns about inconveniencing clinicians, influenced the decision to seek help. People attempted to bypass aspects of the system perceived to block access to care, and people often delayed seeking help to access familiar clinicians in-hours |