The Hidden Toll: What Informal Carers Really Experience With Mental Health Services

Behind nearly every person living with serious mental health difficulties stands someone who is often invisible to the system itself: an informal carer. These are the parents, partners, siblings, friends, and other unpaid supporters who provide day-to-day emotional and practical support without training, payment, or, in many cases, formal recognition. A new systematic umbrella review published in PLOS Mental Health has brought together the qualitative evidence on what these carers experience when they interact with mental health services, both in supporting the people they care for and in seeking help for their own wellbeing. The findings paint a sobering picture of exclusion, emotional strain, and structural barriers, but also point clearly toward what needs to change.

The review, conducted by Xiaoye Liu, Phoebe Barnett, Patrick Nyikavaranda, Laura Burley, and Brynmor Lloyd-Evans, followed the Joanna Briggs Institute methodology for meta-aggregative umbrella reviews, an approach designed to synthesize findings across multiple qualitative syntheses into higher-order conclusions. The research team searched five databases—CINAHL, MEDLINE, PsycInfo, the Cochrane Library, and Epistemonikos—for relevant studies published up to the 9th of May 2025. From this comprehensive search, twelve eligible qualitative reviews were identified, spanning a wide range of mental health service contexts. The quality of the primary systematic reviews was assessed using a framework adapted from the work of SmithBattle and colleagues, ensuring that only methodologically sound evidence contributed to the final synthesis.

The analytical process was rigorous and layered. Findings were extracted from each eligible review and aggregated into discrete categories, from which six higher-order synthesised findings were developed. These six findings form the backbone of the review’s conclusions and together describe the arc of the caregiving experience: the emotional complexity of the caregiving journey itself; the process of recognizing and coping with a loved one’s mental health difficulties; the multiple barriers that stand between carers and the mental health support they need; the persistent responsibilities and roles carers assume in supporting service users; the complex, often contradictory experiences of engaging with services; and the relational strain that accumulates during the caregiving process.

The first of these findings, emotional complexity in the caregiving journey, captures something that clinical systems frequently overlook: caring for someone with mental health difficulties is not a single emotional state but a shifting landscape. Carers describe moving between love, grief, frustration, hope, and exhaustion, often within the same day. This emotional ambivalence is not a sign of weakness or inadequacy; it is a rational response to a role that is simultaneously rewarding and draining. The review suggests that services that fail to acknowledge this complexity risk alienating the very people who provide the majority of day-to-day support to service users outside clinical settings.

Recognition emerged as a second major theme. Before carers can seek help effectively, they must first recognize that something is wrong and come to terms with what that means. The synthesis found that carers often go through a prolonged and difficult process of identifying their loved one’s mental health difficulties, learning to cope with them, and adjusting their own expectations and lives accordingly. This recognition phase is frequently navigated alone, without professional guidance, and the delay it introduces can have consequences for both the carer’s wellbeing and the timeliness of the support the person they care for ultimately receives.

Perhaps the most consequential finding concerns barriers to access. The review identified multiple, overlapping obstacles that prevent carers from obtaining mental health support, both for the people they care for and for themselves. These barriers are structural as much as they are personal: confidentiality rules and privacy frameworks that, however well-intentioned, can leave carers without basic information about the person they support; services that do not routinely ask about or acknowledge the carer’s role; long waiting times; fragmented pathways between primary and specialist care; and a simple lack of awareness about what support exists and how to reach it. The cumulative effect is that carers often describe hitting wall after wall when they try to engage with the system on behalf of themselves or their loved ones.

Once carers do manage to engage with services, their experiences are described as complex and frequently contradictory. Some carers report positive encounters—moments of being listened to, included in care planning, and treated as partners rather than bystanders. But the review’s synthesis makes clear that these positive experiences are the exception rather than the rule. Most carers described feeling excluded from decisions about their loved one’s care, dismissed when they raised concerns, and treated as peripheral to the clinical process despite often being the people who know the service user best. This exclusion is not merely a matter of hurt feelings; it has practical consequences, because carers who are shut out of communication and care planning are less able to provide informed, effective support between appointments and during crises.

The fourth and fifth findings—persistent responsibilities and relational strain—highlight the weight that carers carry over time. Supporting someone with mental health difficulties is rarely a short-term commitment. Carers describe taking on responsibilities that persist for years or decades: monitoring symptoms, managing medication, advocating with services, providing emotional stability during relapses, and absorbing the practical and financial consequences of illness. Over time, this sustained burden produces relational strain, as the caregiving relationship reshapes family dynamics, friendships, and the carer’s own identity. The review found that this strain is compounded when services fail to provide respite, acknowledgment, or direct support for the carer’s own mental health, leaving many carers to cope with distress, anxiety, and exhaustion of their own without adequate help.

Taken together, the six synthesised findings converge on a central conclusion: mental health services urgently need to recognise, involve, and support informal carers. The review’s authors emphasize that this is not simply a matter of courtesy or goodwill. Carers are, in effect, an extension of the care system, providing support that services themselves could not replicate at scale, and their wellbeing is inseparable from the wellbeing of the people they support. When carers are excluded, distressed, and unsupported, the entire ecosystem of care weakens. When they are informed, included, and supported, everyone benefits—the service user, the carer, and the system itself.

The implications for policy and practice are direct. Services could routinely identify and register carers, involve them in care planning with appropriate consent, provide accessible information about mental health conditions and available support, and offer dedicated services for carers’ own mental health needs. The umbrella review’s strength lies in its breadth: by synthesizing twelve qualitative reviews across diverse service contexts, it demonstrates that these are not isolated complaints from particular settings but consistent, recurring patterns in how carers experience mental health systems worldwide. As mental health services everywhere face rising demand and constrained resources, the review makes a compelling case that supporting informal carers is not an optional extra but a core component of effective, humane mental health care.

Subject of Research: Informal carers' experiences with mental health services and their own support needs

Article Title: Informal carers’ experiences of mental health services regarding supporting those they care for and getting support for their own wellbeing: A systematic umbrella review of qualitative evidence

Article References: Liu, X., Barnett, P., Nyikavaranda, P., Burley, L., & Lloyd-Evans, B. (2026). Informal carers’ experiences of mental health services regarding supporting those they care for and getting support for their own wellbeing: A systematic umbrella review of qualitative evidence. PLOS Mental Health, 3(10), e0000740. https://doi.org/10.1371/journal.pmen.0000740

Image Credits: AI Generated

DOI: 10.1371/journal.pmen.0000740

Keywords: informal carers, mental health services, qualitative research, umbrella review, caregiving, caregiver support, PLOS Mental Health, systematic review, relational strain, access barriers, carer wellbeing, meta-aggregation