Introduction

Globally, individuals with physical disability, a cognitive condition or a chronic life-limiting illness depend on unpaid care provided by family members and friends [1–3]. The official number and percentage of informal carers in the population in each country, released in the 2018 Global State of Care Report [3], in the following high-income countries were as follows: Australia, 2.7 million (11%); Canada, 8.1 million (28%); the United Kingdom (UK), 6.5 million (10.3%); and the United States (USA), 43.5 million (13%). These numbers are expected to increase with an ageing population worldwide. While carers can articulate positives such as pride associated with progress and/or recovery made by the care recipient (also known as the caree) arising from the caring role [4], there is also strong and consistent evidence demonstrating that providing care for others can negatively impact caregivers as the caregivers forego their own health and social well-being to meet the needs of the care recipients⁵. Internationally recognised priorities for caregivers’ support include caregivers’ needs, awareness, supportive workplaces, and health and well-being [3, 5].

Unmet needs are defined as the differences between the services perceived by the informal caregiver to be necessary to manage both the health condition of the patient and the caregiver, and the services actually received [6, 7]. For informal caregivers of people with health concerns, experiencing unmet needs can result in negative outcomes in mental health, such as isolation and loneliness [8, 9], increased burden, depression, anxiety, and deterioration of physical ill-health, exacerbation of chronic health issues and frailty [5, 8–14]. Previous research conducted on the unmet needs of caregivers of people with cancer have found that the demographic variables of age [15–17] and gender [16–18] are associated with experiencing higher rates of moderate-high unmet needs. In particular, younger caregivers experienced more care-related information, financial and social unmet needs than older caregivers [16]. Female caregivers in this population have also reported higher unmet needs [16–18], particularly unmet psychosocial needs [18], than male caregivers. Therefore, individual impacts can place unique challenges and demands on the caregiver. Further research needs to be conducted to compare these factors and examine their influence on unmet needs of informal caregivers.

It is difficult to compare quality, quantity, utilisation and provision of health care services, even when limited to high-income countries [19, 20], and what this means for informal caregivers who are seeking support. One way to examine these areas of interest is to assess caregivers’ unmet needs using the same instrument across countries and care recipient conditions. Comparing informal caregivers’ unmet needs assessed by the same instrument across countries and caregiving groups could provide meaningful insight into the unique and common unmet needs of informal caregivers. For example, understanding possible similarities would allow for the efficient sharing of support programs. Alternatively, if the impact of caring is unique to type of health condition or country, tailored programs may need to be developed.

The purpose of this study was to identify the frequency of self-reported unmet needs among a convenience sample of informal carers, and the age, gender, caregiving group and country-related factors associated with high unmet needs. This information will be used to inform the development of interventions that will target and address frequently reported unmet needs, in order to support a range of caregivers. The aims of this study were to: (1) assess the percentage of participants reporting moderate-high unmet needs across unmet needs domains; and (2) examine the following variables associated with types of unmet needs: demographic (age, gender), care recipient condition (Alcohol and other drug use; Alzheimer’s, dementia; Cancer; Mental/emotional illness; Mobility, physical disability; “Old age”, frailty; Stroke; and Other), and country (Australia, Canada, New Zealand (NZ), UK, USA and other) variables associated with types of unmet needs reported by informal caregivers.

Methods

Results

Overall, 2183 people clicked on the survey, and 591 people entered data into the online survey (Fig 1). Participants were included in the final analysis if they answered at least one question of the unmet needs survey, and as a result 457 responses were included in the analysis. However, not all questions were answered by all respondents and as a result sample sizes differ according to question.

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Fig 1. Recruitment schedule.

https://doi.org/10.1371/journal.pone.0243502.g001

Table 1 presents the demographics of the study sample. More than half of the participants reported providing care for a family member who was not their spouse, such as their parent or child (n = 192, 53.5%). The most commonly reported care recipient condition was “Other Conditions” (n = 121, 26.48%) which included conditions such as Autism (n = 13), intellectual disability (n = 12), and brain injury (n = 12). As only four people indicated that they cared for someone who had an Alcohol or other drug issue, this category was collapsed into the “Other Conditions” category. Countries included in the “Other Countries” country category included Ethiopia (n = 2), Germany (n = 2), and Russia (n = 2).

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Table 1. Demographics of informal caregivers (total n = 457).

https://doi.org/10.1371/journal.pone.0243502.t001

Percentage of participants reporting moderate-high unmet need across domains

The ten highest ranked moderate or high unmet needs items reported in the last month by informal caregivers are shown in Table 2. Seven of the ten top reported unmet needs related to the Self-care domain, followed by two items in the Communication and relationship domain, and one in the Health service management domain. A complete list of the items ranked by percentage of moderate-high unmet needs is reported in S3 Table.

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Table 2. Ten highest ranked moderate or high unmet needs reported in the last month by informal caregivers (n = 457).

https://doi.org/10.1371/journal.pone.0243502.t002

Table 3 shows the adjusted self-reported demographic, disease-related and country related variables associated with reporting moderate-high unmet needs in each domain. Caregiver age (years) was significantly associated with reporting moderate-high unmet needs in the three domains: Health Information and support for care recipient; Health service management; and Support services accessibility (all p <0.05). Crude logistic regression modelling is reported in S4 Table.

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Table 3. The adjusted self-reported socioeconomic, disease-related and country related variables associated with reporting moderate-high unmet needs in each domain; logistic regression model (n = 359).

https://doi.org/10.1371/journal.pone.0243502.t003

Discussion

This paper provides further evidence of the unmet needs of informal caregivers across caregiving groups and countries. Unmet self-care needs were identified as a priority area for support for informal caregivers, in addition to communication and relationship unmet needs. This study also identified that younger caregivers require further support with health information, health services and support services than older caregivers. Caregivers are also experiencing similar unmet needs despite the country and the health condition of the care recipient. Therefore, these data present insights into priority areas for generalisable support to meet the needs of informal caregivers across countries and care recipient conditions.

Seven of the ten top reported unmet needs were in the Self-care domain, with a further two in the Communication and relationship domain and the last from the Health service management domain. Self-care unmet needs were largely focused on how providing care negatively impacted the caregivers’ lifestyle: caregivers struggled to reduce stress, manage their own health, engage in their usual activities/working life, take time off from caregiving, access information about support services to them available as caregivers and information that is relevant to their own unmet needs, and finally, address fears and concerns about their own physical and/or mental deterioration. Opportunities to increase the provision of support in current practice include allowing caregivers to resume usual activities and/or engage in new activities that provide pleasure, respite, and achieve healthier lifestyles that will support caregivers in reducing stress and looking after their own health. Raised awareness of caregiver unmet needs among health care providers should provide direction for support. Recent literature recommends that health providers need competency-based education about the unmet needs of family caregivers [32–36]. Open communication between health care providers and caregivers will assist caregivers to access information relevant to their own unmet needs and help them address fears about their own health deterioration.

The top-rated Communication and relationship unmet needs included balancing the needs of the care recipient with the needs of the caregiver, and helping the care recipient to understand the experience of the caregiver. As stroke often results in mental and physical outcomes that can make communication challenging, where the care recipient’s condition permits, the support of psychological support workers in counselling sessions may be needed to facilitate and assist in healthy discussions of changing roles, perspectives, and understanding of the unique experiences between caregiver and care recipient. Individual support should also be provided to the caregiver. The top-rated Health service management unmet need focuses on the continuation of ongoing support and care for the person with the health condition. While there are few longitudinal studies which investigate the changing needs of caregivers, these studies found that caregivers have high numbers of unmet needs across all domains, which change over time [37, 38]. Previous evidence supports the contention that caregivers experienced difficulty in making arrangements when their care recipient was discharged home, and further difficulties accessing and navigating urgently needed services [39]. As part of their roles, health care professionals such as social workers and case managers should provide ongoing support to caregivers, in addition to the person that they care for, to ensure that they are engaged in much-needed and high-quality care throughout the caregiving continuum and recovery trajectory of their care recipient. Caregivers should be adequately supported and connected with information, services and health plans for themselves and their care recipients with the support of health care professionals to co-ordinate and assist with these tasks.

Younger caregivers (aged 18–45 years) appear to be particularly vulnerable to experiencing unmet needs, as significant differences were shown across the three domains where logistic regression modelling was performed: Health Information and support for care recipient, Health service management, and Support services accessibility. These findings correspond with the existing literature on the unmet needs of caregivers of people who have cancer [15–17]. As the majority of the sample were people who identified as other family members (rather than spouses) who may have taken on the caregiving role to conform to family generational expectations, it is possible that the people who are experiencing the most unmet needs are adult children providing care for an elderly parent, or parents who are providing care for children, a suggestion which is consistent with previous research [40–42]. Further considerations include that carers in this age group are working-age, and may need to manage addition pressures such as reconciling conflicting demands from work and caregiving [43]. This study has identified younger caregiver age as significantly associated with reporting moderate-high unmet needs and may provide health care professionals with additional insight into who may need extra support during the caregiving process to ensure their health and well-being. Further qualitative research should also be conducted to explore the unique unmet needs, challenges and/or coping strategies used by younger family caregivers, with further consideration of differences compared to older family caregivers, spouses and other family members.

Although our study identified that the unmet needs of caregivers were found to be comparable across participant variables, with the exclusion of age, there is a large body of evidence to support the importance of different caregiving scenarios on unmet needs experienced by caregivers. For example, carers of young stroke survivors (less than 65 years old) were found to have higher unmet needs than other carers of stroke survivors [44] and ethnicity may be associated with the long-term unmet needs among carers of stroke survivors [45]. A study investigating the long-term unmet needs of carers of people who have cancer, found that early perceived caregiving stress predicted all domains of unmet needs at the eight year follow-up [46]. Therefore, while the results of this study highlight the frequency of reported unmet needs of younger caregivers, caregivers experiencing many different circumstances are still in need of support to address their unmet needs.

The unmet needs of caregivers were found to be comparable across gender, countries and care recipient conditions. These findings suggest opportunities to increase generalised support for caregivers across health care systems. The areas this support could address include raising awareness of self-care and communication challenges, in addition to the unique challenges that caregivers continue to face. Future research should consider the development of resources/services to facilitate, enable and support caregivers to effectively communicate their situations and own unmet needs to health care providers, friends, family, and the care recipients so that in turn, they may receive support to meet their needs and increase their quality of life, health, and well-being. To best deliver resources and support to these groups, platforms that have the potential for wide-spread dissemination and reach for provision of resources and support across countries, such as web-based approaches, should be considered.

Conclusions

This study examined the unmet needs of informal caregivers, and the demographic, disease-related and country-related variables associated with reporting moderate-high unmet needs. The highest ranked unmet needs were in the Self-care domain, suggesting that support services and resources for caregivers are needed, particularly those which provide opportunities for caregivers to manage and improve their own health, such as respite care. Additionally, communication and relationship unmet needs are also prevalent; facilitation of healthy discussions between caregiver and care recipient, supported and mediated by health care providers, is needed. Younger caregivers (aged 18–45 years) are particularly at risk for experiencing unmet needs; age-appropriate support and resources should be provided to these caregivers. Country of residence and/or care recipient condition were not directly associated with reported levels of unmet needs in this sample; therefore, generalisable interventions and support may need to be developed. Resources and support disseminated online may be an acceptable and feasible way to support informal caregivers (in particular younger caregivers) across multiple countries who provide care for people with a range of health care conditions.

Supporting information