Chapter 4

Supporting informal carers

Morag Farquhar

Primary Care Unit, Dept of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Cambridge, UK.

Correspondence: Morag Farquhar, Primary Care Unit, Dept of Public Health and Primary Care, University of Cambridge, Institute of Public Health, Robinson Way, Cambridge, CB2 0SR. E-mail: mcf22@medschl.cam.ac.uk

Advanced respiratory disease has a high symptom burden that causes physical disability, anxiety and depression, and loss of independence and dignity, and often occurs alongside other patient comorbidities. It places a huge burden not only on patients and health systems, but also on informal carers (families and friends who support them at home). These carers can experience isolation due to the restrictions placed on their lives, role change, and a range of emotions including anxiety and anger. Carers play a crucial role, but a considerable care burden falls on them, with well-established impacts. There is substantial evidence that carers are largely unsupported. This chapter aims to increase awareness of carers and their important role, the impact of caring, carers’ support needs, ways to support active and bereaved carers, and implications for research.

The profile and importance of carers

Informal carers are “lay people in a close supportive role who share in the illness experience of the patient and who undertake vital care work and emotion management” [1]; they are also known as “family carers”, “caregivers”, “supporters” or simply “carers”. While at least half of carers provide care in the same household [2], care can be provided by a complex and diffuse network of both families and friends [3].

In the USA, 34.2 million people (14.3% of the population) provided unpaid care to an adult aged ≥50 years in 2015 [4]. One in 10 patients on any UK GP practice list are carers [5] and 1.4 million people provide ≥50 h unpaid care per week [2]. By 2030, 10.9 million people will be providing informal care across the EU for at least 35 h a week, with 21.5 million providing care for at least 20 h a week [6]. Carers play a crucial role in providing supportive care to relatives [7], reducing formal care costs [8–10], and contributing to the social care economy [11]. It is well established that carers enable patients to be cared for, and even to die, in their place of choice [12].

There is a vast generic literature on carers, and on carers of patients with advanced disease [13–16], but there is also more discrete literature on carers supporting patients with breathlessness in advanced disease, or patients with advanced conditions causing breathlessness. This small but growing literature relates predominantly to COPD but also to cancer.

Data on the number of carers supporting patients with breathlessness in advanced disease are scarce. An RCT of a UK breathlessness intervention service reported that at least 60% of recruited patients with advanced, cancer-related breathlessness [17] and 66% of those with breathlessness due to advanced, non-malignant disease (predominantly COPD) had a carer [18]. A retrospective Norwegian survey of next of kin of COPD patients by GAUTUN et al. [19] reported that >70% of patients had one or more carers, and a UK prospective observational study of a well-defined, population-based cohort of patients with advanced COPD found that 77% of patients had a carer [20].

Analysis by CURROW et al. [21] of retrospective carer data from the South Australian Health Omnibus found that the mean±SD age of carers of patients with end-stage lung disease was 51.2±16.5 years (range 17–85 years) and one in five was a spouse. One in five of these carers provided physical care (20.8%), either on a daily basis or as intermittent hands-on care, for a mean±SD period of 40.1±56.9 months [21]. MIRAVITLLES et al. [22] reported data from the 2008 Survey on Disabilities, Personal Autonomy, and Dependency Situations (Encuesta de Discapacidad, Autonomía personal y situaciones de Dependencia (EDAD)) on the characteristics of Spanish patients disabled by COPD and their carers: the mean±SD age of carers was 56.5±14.9 years and 76% were female.

FARQUHAR et al. [20] reported on an older cohort of carers. In their UK prospective, population-based sample of 115 carers of patients with advanced COPD, the median age of carers was 68 years (interquartile range (IQR) 59–75 years), 73% were female, and 80% were spouses. Most of these carers (87%) lived with the patient, nearly a third reported having other caring responsibilities (32%), and they reported having been in their caring role for a median of 7 years (IQR 3–12 years). This was a changing role. Three-quarters (73%) reported that the amount of caring they gave had changed over that time, and two-thirds (66%) that the type of care they gave had changed. Most gave help every day (90%) and a third gave help for >50 h per week (33%). These carers were not just caring for someone with COPD; they also identified other comorbidities patients had that had an impact on their caring role, a factor noted by others [23].

Carers of patients with advanced respiratory disease carry out a range of often complex personal care tasks including washing, dressing, managing symptoms, administering medicines, or managing home oxygen. As well as this practical help, they also provide emotional support. This is an aspect of caring that is probably not captured in the data about caring hours noted earlier. Thus, carers’ roles are multiple [20], often including overnight vigilance [24, 25]. BOOTH et al. [25] described carers providing support and care at night, lying awake to make sure their patient was breathing, or helping their patient be comfortable.

Carers have been shown to have a positive impact on the well-being of patients with COPD: having a carer is associated with better adherence to treatment, reduced rate of smoking, and less frequent emergency visits [26–28]. A qualitative study by HYNES et al. [29] found that caring involved continually assessing the state of play by drawing on intimate and nuanced knowledge of the patient’s expression of symptoms. While these carers lacked understanding of COPD and reported feeling out of their depth, HYNES et al. [29] found that carers built up expertise, skill, and tacit knowledge which came into play in decision-making during symptom exacerbations and which healthcare professionals should acknowledge; MCPHERSON et al. [30] similarly reported on the need for health and social care to recognise carer expertise.

Impact of the caring role

The caring role comes at a cost. Negative effects on carers’ physical and psychological health (including premature mortality) are well established in the generic caring literature [7, 31–35], and these effects have been shown to be worse for those living in the same household [36] (the most common scenario in respiratory conditions). Using qualitative and quantitative methods, a number of studies have reported the experiences and impacts of the caring role for carers of people with end-stage lung disease [21]. The predominant finding is of a negative impact, but some have also noted some positive aspects of the caring role [24, 37–39].

Most of the carers in the study of advanced COPD by FARQUHAR et al. [20] were older with chronic health problems of their own, reporting a range of self-identified physical and mental health problems that had an impact on their ability to care, e.g. back pain (20%), arthritis (19%), heart problems (14%), and mental health problems (14%). The mean Hospital Anxiety and Depression Scale scores for anxiety and depression of these carers were higher than population norms: 27% had probable clinical anxiety and 11% had probable clinical depression [20]. Similarly, MIRAVITLLES et al. [22] reported that up to 35% of carers had health-related problems: feeling tired was the most frequent problem, followed by feeling depressed. Health effects and existing health problems in carers have implications for healthcare professionals in meeting carers’ support needs [40].

Impacts extend beyond health. Caring is a highly individual experience; carer appraisal of the situation, as opposed to the symptoms they are required to manage, may determine how they cope [41, 42]. Carers of patients with advanced respiratory disease have reported strain, isolation, fear, anxiety, emotional distress, uncertainty, powerlessness, helplessness, depression, uncertainty about the future, restrictions, social isolation and loss [19, 22, 24, 25, 37, 43–54]. HYNES et al. [29] found losses related to a previous life, independence, a hoped-for future, financial security and earning capacity. The economic or occupation-related impact of supporting someone with COPD among younger carers has been noted by others [22, 53].

A qualitative study by SIMPSON et al. [55] reported that carers and patients with COPD can have different expectations of the carer and some spousal carers perceived the patient to have child-like needs or attitudes. Others [49, 50] noted that a couple’s identity may change over time. An exploratory study by LEIDY and TRAVER [56] found that family members perceived patients with COPD to have disquieting behaviours and there was discrepancy between family and patient views of social behaviour that suggested sources of distress. Furthermore, a small quantitative study by PINTO et al. [57] reported that one of the most important predictors of carer burden was the relationship between carers and patients (in addition to carers’ mental health scores). The impact of these changed carer–patient relationships can be compounded by isolation. As patients deteriorate, carers can find themselves incrementally providing more care and becoming detached from others; they can feel that the patient is their responsibility alone and no one else’s [37]. Social isolation can lead to emotional strain, and can be deepened by a poor understanding of COPD and worry that exacerbations can be fatal [25].

Disease stage may influence a range of impacts. MALIK et al. [58] performed a survey of carers of breathlessness patients with lung cancer or heart failure and identified fewer positive caring experiences for carers of patients with more severe breathlessness. FIGUEIREDO et al. [54] demonstrated that those caring for people with advanced COPD reported higher subjective burden, more depression, and poorer self-rated mental health than did those caring for people with early COPD. Similarly, MIRAVITLLES et al. [22] found that the probability of a problem arising in a carer was positively associated with the degree of dependence of the COPD patient. Furthermore, the likelihood of developing health problems was higher among carers of patients with great, severe, or moderate dependence than among those caring for non-dependent patients. With regard to leisure and social problems, the degree of dependence was also associated with the probability of not being able to go on holiday, not having time for friends and for self-care, and having conflict with a partner (only in the highest level of dependence). Disease stage has also been shown to have an impact on the coping styles adopted by carers of patients with COPD. The cross-sectional interview study by FIGUEIREDO et al. [59] reported that those caring for patients with advanced disease used three types of coping: problem-solving, emotion-cognitive and managing stress coping. By contrast, those caring for patients with early disease were more likely to use just problem-solving to cope. This suggests that patient decline in functioning leads to increased dependence on the carer, requiring the carer to adjust to their demanding caregiving role [59].

Little is known about whether different disease trajectories and inequitable access to palliative care and social support have a differential impact on carer outcomes [60], but longitudinal and qualitative studies have demonstrated how the course of non-malignant disease, such as COPD, is lengthy and beset with uncertainty [21, 61]. This unpredictable trajectory is associated with challenges for healthcare professionals in providing a prognosis, even in end-stage disease, leaving patients and carers with significant gaps in information on the disease course [47, 62–64]. This uncertainty, combined with living in the shadow of fear of breathlessness [52], can further exacerbate the already heavy burden for patients and carers. This literature resonates with the objective and subjective stressors and situational context of the caring process identified in broad theoretical models of caring [65–68].

Despite this, carers can still remain unnoticed or invisible [3, 69]. This is in part because carers can be reluctant to ask for support, only seeking help at a time of crisis [25, 37, 70]. Healthcare professionals need a better understanding of the barriers to seeking and accepting proactive support [71]. Many carers do not consider themselves “carers”; rather, they see themselves as a spouse, child or other relative [72], a role for which they may not feel they should, or could, ask for help. They can feel guilty about “not coping” and can have difficulty in acknowledging how serious the patient’s illness is [16, 73]. Some value self-reliance and independence [74] but are also often reluctant to request help for fear of diverting resources from patient care [14]. Health services are mostly geared towards the patient’s medical needs, mainly acute needs and symptom management [25], thus healthcare professionals predominantly focus on the patient and can neglect to identify who carers are and how they are managing. Further, despite being patients themselves [75], carers can be ambivalent about their own health needs, and the reality of caring often means putting their own health second [24, 76, 77]; it can be difficult to access care for their own health where they are unable (or reluctant) to leave the patient. CURROW et al. [78] suggested a range of potential carer, patient and healthcare professional reasons for help not being given or asked for, including: embarrassment in asking for help; upskilling of carers over time; lack of consensus between patients and carers about the help needed or wanted; patient and carer hoping that the patient will recover to the previous level; recalibration or response shift to a new “normal”; slow and unpredictable disease progression making it difficult to determine stages; disease-specific factors (e.g. surreptitious onset, stigma, discreditation by healthcare professionals, acceptance that breathlessness is a normal symptom); lack of appreciation by healthcare professionals about the help needed; and lack of knowledge or signposting to services by healthcare professionals.

Whatever the reasons for not accessing help, carers lack rudimentary support or assistance [24, 25, 37]. FARQUHAR et al. [20] reported that two-thirds of advanced COPD carers could not identify a healthcare professional for their caring role. When they did identify someone, this was often couched in terms of who they would contact for help in an emergency, rather than someone who was giving them direct ongoing support. Data from healthcare professional interviews within the same study resonated with this: they rarely reported assessing carers’ health or support needs, or knowing who their patient’s carer was [79].

Carer support needs

The evidence base for carer needs in relation to caring for someone with advanced respiratory disease, or with breathlessness as a result of an advanced disease, is growing. Unmet needs include knowledge and strategies to support the patient and manage their caring role, and feelings of helplessness and powerlessness [25, 37, 43]. Analysis by CURROW et al. [21] of survey responses of bereaved carers to the South Australian Health Omnibus reported that over a third of carers of someone with end-stage lung disease indicated that they had unmet needs (109 (38%) out of 290), including for support with physical care (17%) or symptom control (11%), for information about the future course of the illness (11%) or service availability (11%), and for emotional support for their patient (11%). Similarly, the prospective study by FARQUHAR et al. [20] found that more than half of carers of patients with advanced COPD wanted more support with knowing what to expect in the future, and more than a third with understanding the illness, knowing who to contact when concerned, having time for themselves in the day, and dealing with their feelings and worries. Around 20% wanted more support with practical help in the home, equipment to help care for their relative, looking after their own health, and talking with their relative about their condition.

FARQUHAR et al. [20] also found that carers were unprepared for many aspects of the caring role despite, or perhaps because of, the longevity of their caring role (median duration 7 years): more than half felt unprepared for finding out about and setting up services, and more than a third felt unprepared for getting help and information from the health system, and for responding to and handling breathlessness. This feeling of being ill-prepared and lacking confidence in caring tasks and situations has been identified by others [21, 25, 37, 43, 80–85]. It is a source of anxiety and has an impact on carers’ ability to ask for help [85, 86], leading to crises. Carers lack information about, and access to, professional services and only use help in acute situations [87], e.g. SPENCE et al. [37] found little carer awareness of the potential of palliative care.

Carers want support to better manage symptoms such as breathlessness [21, 25], e.g. having a response plan is important to them [61]. There is a fear associated with acute exacerbations [43]; fear of breathlessness drives demand for emergency healthcare, which in itself is distressing [88], costly [89], and may sometimes be unwarranted [88, 90]. Older carers describe significantly lower COPD-related knowledge than younger carers and may require more education on the use of drugs and symptom management [91]. Healthcare professionals receive appropriate training on managing patient needs, but many carers receive no such guidance and feel ill-prepared to care [80, 81]. Educating carers about breathlessness, evidence-based, non-pharmacological interventions for breathlessness, and relevant breathlessness management (e.g. what patients can be expected to do, what a carer can do in a breathlessness episode) may meet both patient and carer needs.

PENFOLD et al. [92] interviewed 25 patient–carer dyads living with breathlessness due to advanced cancer or advanced COPD to identify what these carers wanted to learn about. They found that carers wanted an educational intervention that was “for carers” and identified six interrelated topics that carers of patients with breathlessness wanted to learn about; these are shown in table 1.

PENFOLD et al. [92] found that most carers wanted to learn “with” the patient, but not for every topic. There was a tension for carers with regard to wanting to know what to expect in the future but also not wanting to upset the patient. This reflects the findings of PHILIP et al. [61] that some carers believe the information they need may differ from the information the patient needs. Carers want information about the disease trajectory [21, 37, 61, 87]; they experience feelings of uncertainty about patient deterioration and what the future holds [43]. They also have a need for medical staff to introduce the idea of future planning or need for additional help so carers do not have to do this themselves [61].

Supporting carers

Improved life expectancy for people with long-term conditions means more informal care will be required for longer periods. Carers of patients with advanced chronic non-malignant diseases face particular challenges given the longevity of their caring role [7, 93], coupled with uncertainty and complexity [16]. Demands on carers will increase further as policies to increase the number of home deaths become effective (e.g. see the UK Dept of Health strategy from 2008 [94]). In addition, home-based care and early discharge of very ill patients, who may also be dependent on technology such as NIV, raise questions about how both patients and their carers should be supported in the home [29].

There is some evidence that effective management of the patient’s condition can impact positively on carers, but carers also need direct support for themselves. In this context, “support” covers a range of activities enabling carers to manage life with advanced disease. It might include the provision of tangibles such as information, education or services [95], but could also include the provision of comfort (sharing emotional burden, sympathy, encouragement), strengthening (bolstering the individual’s ability to sustain functioning by conveying understanding and demonstrating kindness, concern and competence) and advocacy (demonstrating having the individual’s interest foremost) [96].

There is policy rhetoric that carers should be supported, but little guidance on how this should be achieved in clinical practice [97]. KAMAL and DIONNE-ODOM [98] noted that definitions of palliative care consider the “unit of care” to be the patient and family and that palliative care seeks, as a speciality, to address the distress of both. They suggest that palliative care should meet “societal need and take on the family caregivers as a new focus of its specialised care” [98]. However, carer support is not just the remit of specialists; generalists have the skills to provide carer support, or to be the vehicles for provision of carer support (i.e. to identify carers and identify need). Furthermore, evidence-based resources have been developed to train support workers or volunteers to deliver carer support [99]. Healthcare professionals need to be better at working with carers, supporting them in their role, and helping them identify and manage changes in the patient and in their own needs. Table 2 summarises six steps to consider in order to achieve this, with more detail given in the following sections.

Stay updated, free articles. Join our Telegram channel

Join