Introduction
Carers provide a significant amount of care for people with a life-limiting illness. [1] The National Palliative Care Strategy explicitly acknowledges the role of carers and the need for their health and wellbeing to be supported as part of holistic palliative care. [1] Carers are often unprepared to take on the role of caring and may have needs such as anxiety related to managing symptoms and decision-making, being isolated, maintaining a relationship outside of the role of the ‘carer’ and access to support which could include physical, emotional or financial assistance. [2-7]
Quality Statement
Two systematic reviews looked at the care of older people receiving palliative care. [8,9] A number of reviews were also included where the mean age of more than 50% participants was over 65 years. [2-5,10,11] A number of additional papers were also included for their usefulness in determining needs for supporting palliative carers of adults even though the age of the palliative cohort was not specified. [6-9,12-16] Most of the studies discussed in the included reviews focussed on community palliative care which is to be expected within a topic discussing family carers. A total of 19 papers were included for review of this topic.
Overall, the quality of the evidence reviewed in this summary is adequate, with only two studies scoring of high quality. The four low-quality papers, lacking a robust methodology and reporting of study characteristics, were included due to the high applicability to the topic and lack of more high-quality evidence.
Evidence Synthesis
Of the 19 systematic reviews contributing to this synthesis of evidence, the review by Morris et al. [14] described both the positive and negative aspects of end-of-life caring at home. Positive aspects were associated with the ability to continue with usual day-to-day activities, the familiar environment to both family, visitors and the person receiving palliative care, and the ability to maintain relationships with others and feeling secure. [14] Whilst these positive aspects have the potential to ‘distract’ the care recipient from the feeling of ‘helplessness’, more negative consequences can be felt by the family carer. [14]
This synthesis of the evidence focuses on sources of burden and strategies to reduce symptoms of burden that may be experienced as a family carer. Burden is generally considered to include the impact to a person’s physical, emotional and psychological health, social connections and financial status as a result of assuming the role of carer [17,18]
A systematic review by Leow and Chan [11] explored characteristics that might be associated with risk of carer burden. Findings from the seven cross sectional studies within the review suggest that carer burden is more prevalent in females than males. In addition, younger carers were more likely to report higher levels of burden, although through statistical testing it did not appear to be congruent with being the child of a patient as opposed to a spouse. In support of these findings, a study by Whittingham et al. [12] found that while younger carers were more likely to report symptoms of burden as anxiety and depression it was often as a result of also having to work part-time or full time while also caring for their relative, particularly in the child/parent caregiving relationship. Whereas spousal carers, more likely to be in their later years and have their own health conditions, [14] also suffered significant burden of caring but struggled more so with the physical demands of personal care, monitoring symptoms and managing behaviour changes and changes in their relationship with their partner. [12]
All carers are at risk of anxiety, burden and physical exhaustion with the responsibility of caring. [2,12] Those particularly at risk are low income earners and people from a cultural and linguistically diverse (CALD) background. [11] The type and severity of a person’s illness may also be associated with the degree of carer burden. As seen in advanced Alzheimer’s, the more severe the behavioural or neurological impairment, the greater the risk of caregiver burden. [17,18] Being able to identify the needs of specific groups is a step towards better understanding how to support family carers.
A review by Kang et al. [3] identified key themes for the needs of informal carers in the palliative management of older adults all of which capture themes also discussed in the wider literature discussed in this synthesis. Research themes identified and shared across other included review papers were as follows:
- Sharing of caring, such as the practical tasks of caring for a person at home, or the ability to discuss their fears, concerns etc. with other people in either an informal or formal setting [3,7,13,19]
- Anxiety, surrounding the quality of care that a carer can provide, or the burden of decision-making for the person [2,3,5,7,19]
- Being isolated, either personally or concern for isolation of the person from usual or pleasurable activities. Also, geographical isolation from services and support such as in rural areas. [3,5,7]
- Access to support, whether this be physical support (such as visiting health professionals, equipment and training, physical respite) or emotional support (such as support groups) and financial support (the impact on household income and expenditure). [2,3,7,10,13]
- Maintaining a relationship, particularly where the spouse or partner is the main carer, being able to maintain a spousal relationship outside of the caregiving role was seen as important [3,7]
An additional theme discussed in several of the other reviews is:
- Supporting family carers in bereavement and anticipatory grief, what support is needed in caring for a dying relative, preferences for place of death and pre- and post-bereavement care. [2,7-10,19]
Sharing of caring
The review by Kang et al. [3] synthesised findings from ten studies that used interviews with older adults with Chronic Heart Failure and their carers who were most often the spouse (n=127), with the exception of five children, one sibling and one neighbour undertaking the carers role. Through the meta-synthesis of the studies, they found that carers were frequently confronted with new tasks such as medication administration and ordering, emotional support and care with personal hygiene as well as usual household tasks often with no-one to share the tasks with.
Care in the home is reliant on the contribution of family carers. [4] The end-of-life experience at home is thought to be a more comfortable and dignified experience. [6] However it is important to consider the impact and experience of the carer in this situation, particularly as carers are often unprepared, manage multiple responsibilities and forgo their own needs. [14] Like Kang et al., [3] Ventura et al. [4] identified many unmet needs for carers. Such issues included poor communication and continuity of care between health professionals, restriction of spiritual activities outside (going to church or connecting with others), and assistance with physical aids and respite.
These issues all contribute to a strong recurrent theme of anxiety for family carers. This anxiety was often expressed in physical symptoms such as poor sleep quality, poor diet and activity levels, increased risk of tobacco and alcohol use, and an increased risk of carer exhaustion. [3]
Anxiety
Carer anxiety, commonly cited in the literature, is multifactorial in nature. The responsibility of monitoring symptoms and administering medication and the fear of acute episodes were the most significant causes for concern. [3,7,11,14] In general, family carers do not feel adequately supported by health professionals and cite lack of communication and coordination between services as a source of anxiety. [3,4] Carers often turn to family or friends for support.
Anxiety is often linked to the themes of isolation or grieving, and the burden of decision-making.
Isolation
Carers express feelings of isolation as a result of becoming an informal carer. Changes can include having to give up working, not having time to pursue hobbies or interests; both of which can reduce time spent away from the home and contact with other people. [3,12] Becoming more housebound and unable to participate in family or social gatherings or holidays can reduce the support network to the person and carer and therefore increase emotional burden to the carer.
Support
Carers value social support networks, access to physical aids and equipment, financial support, and visits from specialist nurses or palliative care team members. [3,7,19]
Research has shown strong social support networks (physical, emotional and informational domains) can positively contribute to a person’s resilience which may protect against caregiver burden. [17] de Wit postulates not all types of social support may be protective. [17] For example, offers of physical support where a high level of skill is required to care for the person may not provide carer relief, while emotional support may be more welcome and effective.
Aoun et al. [7] investigated family carers for people with motor neurone disease (MND), a rapidly progressive disease. These carers needed equipment to assist with basic functions such as eating, moving and breathing, and sought emotional, logistical and financial support.
The issue of financial support was raised in a number of reviews, mainly in relation to the costs of travelling to appointments, lack of earnings from loss or reduced employment, and cost of day-to-day living when caring for a person with a terminal illness. [3,7]
Visits from specialist nurses or palliative care team members were seen as reassuring. Carers very much looked to maintain a relationship with health providers for support in choosing and learning how to use equipment and ongoing support in monitoring symptoms and management of medications. [3,19,20] Symptom monitoring and medication management, tasks that are traditionally the role of trained health professionals, can place enormous expectation on the home caregiver. Two Australian studies found professional support either in person or via telephone improved carer confidence in their ability to manage medication. [20] However, the review by Kang found that the use of telehealth technologies (technology where symptoms can be monitored remotely by the hospital) may have been useful to hospital staff but carers felt ill-informed and hesitant to use them. [3]
Carers expressed the need for regular respite, particularly house-bound carers and those who require assistance with mobilising. [3,5,7,12] More information can be found in the palliAGED topic Respite Care.
Maintaining relationships
Where the family carer was the spouse, both positive and negative experiences were reported in the literature. Positive aspects included the solidarity felt between the person and carer and the ability to confide feelings and share problems together. [12] This is less often experienced by carers of people with cognitive impairment, or where the nature of the disease significantly impacts quality of life and requires frequent hospitalisation or acute care. [7,11] Subsequently, carers can be burdened by isolation and anxiety for decision-making on behalf of their partner or family member. [5] The review by Aoun et al. [7] discussed the loss of a reciprocal and sexual spousal relationship with the care recipient in the case of the rapid deterioration that occurs in the case of MND. When physical function deteriorates, the increasing physical caring tasks such as toileting, eating and drinking can be challenging to the carer. Cognitive and behavioural changes can also be challenging. [7] Family carers dealing with such changes report a significant increase in depression and burden, as do those caring for someone with dementia. [2,19]
Decision-making
Family carers are often anxious about providing care at home and having to make end-of-life decisions, particularly where the care recipient cannot participate in decision making. [7,12,19] In a review by Tong et al. [5] studies suggested that family members prefer to make decisions in conjunction with the health professionals, with full understanding of the end-of-life process and how to provide adequate care. Where the person is able to offer explicit information on how they wish to be managed, there is reassurance to the carer and this can minimise conflict within the wider family.
Written information and advance care planning were important aspects raised by carers as means to reduce this anxiety over the persons wishes, particularly in the event of acute health events or rehospitalisation of the person. [3]
Place of death
A review of 28 studies in the review by Morris et al. [14] reported a growing number of older adults who wish to die at home. However, while this may offer benefits in the ability to maintain relationships and live for longer in familiar surroundings, the burden to the carer is potentially significant. In addition to the issues already discussed, the need for the home environment to be altered to suit the needs of a dying person may change the emotional and social meaning of the home and decrease personal space for the carer. [14] As a result, the home may become isolating and foreign to the carer with rooms furnished with medical equipment. [14] Despite these stresses, carers also preferred home as the place for a relative to die. [6,14]
The prospect of dying at home is regarded as a more comfortable and dignified experience than dying in a hospital. [4] Only ~22% deaths occur at home. [14] Approximately half of all older adult deaths occur in hospital particularly as a result of an acute health episode such as falls or infection, or where complications require significant medical attention. [9] Increasingly, older people are dying in a hospice or residential aged care facility (RACF). Older adults with dementia are often transferred to a RACF after 12-18 months being cared for at home. [2,9,16,19] It is important to note this change in direct care does not appear to alleviate the burden of anxiety or reduce risk of depression for the carers. [19]
The decision to admit a relative into an aged care facility is likely to create significant emotional conflict and turmoil for the carer and may even cause discord within the family, as often the decision for placement may be against the person’s wishes. [2] This is particularly the case in families where the culture suggests that this is a violation of filial piety, such as in the Asian cultures. In addition, the literature suggests female carers may particularly struggle with the decision to seek external help and then also to relinquish the assumed ‘mother/child’ type relationship assumed with the recipient during the care period. [2]
Research is still scarce on preconditions for high quality end-of-life care in both aged care settings and the hospital environment. However, of the papers included in this review several found that the burden of decision-making on the carer was still prevalent, particularly where their loved one had not made their end-of-life wishes known. [2,8,9,19] This burden is reported to be compounded by an often under-staffed environment in residential aged care and the lack of involvement of palliative care specialists or doctors with aged care multidisciplinary teams [8] and poor communication between medical parties and with the family.
A study by Brereton et al. [9] looked at preferences for palliative care within a hospital setting. The study found that issues of privacy and access to nature, the ability to control noise, lighting or other external aspects of their surroundings, were important although possibly more so to the visiting family than the person. Overall, anxiety over transferring care to carers other than themselves is felt by family members. Good communication and a feeling that their relative’s wishes are being respected may alleviate these concerns. [8,9]
Family meetings
Family meetings (case conferences) are a way in which anxiety can be managed for family carers in all settings and at all stages of the end-of-life trajectory. [5,15] Receiving information and understanding the end-of-life care pathway can be empowering to family carers [8] and offer a feeling of participation in decision. Whereas receiving inadequate information perpetuates feelings of losing control and the person feeling objectified. [5] Carers often look to information from health professionals and people within their support network to approve their decision for support outside of the home environment and find reassurance and reduction in burden when others validate their decision. [2]
Grief and bereavement
In a review by Peacock [19], a common theme across four of the ten dementia specific studies, was grief and loss. This theme is particularly pertinent for carers of people with dementia as it is thought that because of the progressive nature of the disease, anticipatory loss and grieving is experienced by the spousal carer, with a linear increase as the disease progressed and functional dependence increased. [19] The review also raised new expressions of grief that may be specific to degenerative conditions such as dementia - the feelings of guilt and the struggle to live as a single person while a spouse is still alive. [19] Peacock [19] proposed that anticipatory grief and guilt may be different to those caring for individuals with diagnosis such as cancer, where feelings of grief can more often be experienced and worked through with the care recipient. [11] Where there is a diagnosis of cognitive impairment, support for carers may therefore need to be start earlier in the palliative journey, even at diagnosis. [19]
Bereavement support groups were found to be useful by family carers to learn strategies for coping and to resolve their grief. [5] Other initiatives discussed in a review by Jaffray et al. [13] and Candy et al. [10] explored the usefulness of mindfulness-based interventions for carers of older adults predominantly with dementia and cancer. Although the findings are not easily extrapolated for carers of individuals outside of these diagnoses, and the findings were not definitive, mindfulness groups appear to have small benefits on a number of health outcomes for carers and at the very least present no risks. [13] This however is only the case where families are not already highlighted as being highly distressed, where support groups actually increased the level of conflict within the family unit. [10] Overall evidence is not strong for the usefulness of any intervention programs regardless of the format, with small samples and a high ‘opt out’ rate (~50%) which could have biased the results for each. [10]
What did appear to be useful was a group setting which offered social interaction and sharing of experiences; these offered positive outcomes for depression, carer burden and increasing quality of life. [13] However, how this style of intervention could be made more accessible to carers not able to attend face to face groups has not yet been evaluated, but it is conceptualised that the use of technology such as digital health or e-health could be useful in this setting.
Summary
More information appears to be needed in how to support carers at different trajectories for end-of-life and bereavement journey and who care for individuals of different diseases; and how the support can be provided when face-to-face groups are not possible or feasible. Acknowledging the role and contribution of the carer, their feelings and stresses can provide comfort and establish a positive relationship with health providers. Providing adequate written information and in-person training and support may assist in overcoming some of the anxiety towards caring at home. In addition, introducing ways in which carers can link in with likeminded people can assist in keeping social and support networks through the caring experience and alleviate this aspect of carer burden. Finally, where health professionals can assist advance care planning, and direct families to possible avenues of financial relief, carer anxiety and burden could also be reduced. In circumstances where the family carer is likely to be at high risk of burden, arrangements for in-home support, options for respite and more regular home care visits may assist in reducing carer strain and burden and assist in them feeling well supported.
Evidence Gaps
- More information appears to be needed in how to best support carers as different trajectories to end-of-life and different diseases may present particular requirements.
- Older Australians may struggle with the physical aspects of caring for a person receiving palliative care. How can they best understand the role that they are comfortable with? How can they best be supported?
- How can carers be supported when face-to-face groups are not possible or feasible?
- The experience of male carers and minority groups are under-represented in the literature currently. Do these people have specific needs in caring for an older person receiving palliative care?
- Interventions to support home carers particularly those in rural and remote areas is warranted.
- Respite services are available but do carers for older people or older carers use respite? What may stop them or hold them back from using these services?
Page updated 08 July 2021