“Call-it-in”: addressing older informal caregivers’ support needs during the COVID-19 pandemic in Aotearoa New Zealand

Informal caregivers—family, whānau and aiga carers/caregivers providing unpaid care for friends, family/whānau members, partners and others requiring support due to ageing, health declines, injuries, cognitive declines or disability^1,2—form the backbone of the health system. Their contributions were critical, particularly during the COVID-19 pandemic, which placed unprecedented strains on health and social care systems.³ During the pandemic, informal caregivers, typically untrained older adults, were recognised as a vulnerable population.^3,4 The pandemic’s lockdown measures and the shortages in health and human services led to increased stress and other mental health issues, increased workloads and heightened social isolation for these informal caregivers.^3–5 Despite their critical role, the literature on informal caregivers remains sparse, particularly in the context of the pandemic in Aotearoa New Zealand (hereafter New Zealand).⁶ While the pandemic-exacerbated challenges they faced are generally highlighted in the literature, both international and New Zealand studies indicate that caregiving experiences during the pandemic were not uniformly negative.^5,7,8 These experiences were dynamic and complex, shaped by the interplay of individual, environmental and social circumstances including ethnicity/race, socio-economic status, gender, social capital, past experiences and health conditions of their own and care recipients, among others.^7–9 These complexities highlight the need for more nuanced research to understand the experiences of caregiving and the specific support systems needed to meet informal caregivers’ needs effectively.

A critical aspect of studying informal caregivers is that they are often overlooked and often disconnected from the formal health systems and service providers.^3,5–7 Particularly, during the pandemic, this disconnection left informal caregivers navigating uncertainty about available resources, how to access them and where to find reliable information.^3–5 Limited exploration of barriers to accessing support services and resources during the pandemic in New Zealand⁶ has resulted in a lack of practical recommendations. Addressing this gap is critical to ensuring that informal caregivers, especially those from under-represented groups such as older, Māori, migrant and rural informal caregivers, are supported in their roles.^5,8,9 As part of our larger research project that explored the lived experiences of older informal caregivers in New Zealand during the pandemic, this paper focusses on a specific question: what specific support needs and resources did participants require during the pandemic? This short paper focusses on overarching findings, since detailed analyses for Māori and rural participants are beyond its scope and are currently under review and already published.⁹ Using an inductive, interpretative qualitative approach, we aim to illuminate the key areas where support for older informal caregivers can be enhanced during future pandemics, disasters and national emergencies.

Methods

We employed an exploratory, interpretative qualitative approach with purposive sampling to conduct in-depth interviews with 81 informal caregivers, including Māori and rural informal caregivers who are under-represented in existing research (see Table 1 for participant demographics). A multidisciplinary team of Pākehā (NZ European), tauiwi (non-Māori) and Māori social scientists conducted the interviews between May 2023 and February 2024, ensuring diverse regional representation and amplifying informal caregivers’ voices across New Zealand. Interviews were primarily conducted face-to-face (with four via Zoom and three by phone) and focussed on caregiving experiences during the pandemic in New Zealand (between March 2020 and December 2022). Participants were recruited from the longitudinal New Zealand Heath, Work and Retirement (HWR) database—a study of individuals aged 55+ living in New Zealand—administered by Massey University’s Health and Ageing Research Team (HART). Participants who self-identified as informal caregivers and indicated caregiving during the pandemic (n=407) were initially contacted by mail. Potential participants, who responded to the invitation letter by phone or email and expressed interest in a 1-hour in-depth interview, were invited to participate.

View Table 1–2.

Audio-recorded interviews were transcribed, and thematic analysis¹⁰ was used to identify key themes related to informal caregivers’ experiences and support needs (see Table 2 for health conditions of care recipients). Ethics approval was obtained from the Health and Disability Ethics Committee (2022 EXP 13416), with all procedures classified as low risk. Pseudonyms are used to protect participants’ privacy and identifying details have been removed.

Results

Our qualitative study explored participants’ lived experiences and identified several key areas where support for informal caregivers can be improved during future pandemics and disasters: 1) awareness of existing support systems, 2) clear and reliable information, 3) accessible and user-friendly support channels, 4) improved communication from formal support systems, 5) emotional and psychological support, 6) dedicated support for informal caregivers, 7) streamlined access to support by reducing bureaucratic hurdles, and 8) context-specific strategies.

Awareness of existing support systems

While organisations such as Health New Zealand – Te Whatu Ora, Whaikaha – Ministry of Disabled People, Needs Assessment Services Co-ordination (NASCA), Stroke Clubs, Cancer Society NZ and Carers NZ, among many other service providers, offer valuable assistance, many participants were simply unaware of these services. For example, Isabella described her uncertainty during the lockdown: “The 24/7-ness of lockdown was quite intense. Somehow, you’ve got to be aware that someone needs help. [I knew] there was help out there, but you just got to know who to call, and I didn’t know who to call” (female, 60s, caring for her husband). Similarly, Mary emphasised:

“What would have probably been a good thing would be even just a phone contact [during the pandemic], because I did not know there was any. There may have been helplines, but I did not know, I am still not aware of where to find support.” (Female, 60s, caring for her ex-husband and mother)

Participants frequently expressed a lack of awareness about available support systems. As elaborated later, this left many balancing the time, risks and benefits of seeking external help—often resulting in reliance on personal and familial resources. This aligns with international research highlighting that informal caregivers tend to lack awareness of available services or choose not to engage with them, even when informed.^2,11

Clear and reliable information

Building on the awareness gap, participants emphasised the critical need for clear, reliable information about available support and resources. A recurring challenge was the lack of visibility and awareness of where to seek help, particularly in navigating unfamiliar and often fragmented systems, as discussed above. For many, the absence of accessible guidance intensified feeling of frustration and isolation. Hannah shared her struggle in trying to provide adequate care without external advice and assistance. She described the emotional toll of relying on personal resources:

“I didn’t know how to support [my flatmate] at all. I was getting frustrated because I thought, ‘Get a grip!’ But it was a real thing, and there was no one to talk to except my 32-year-old daughter … It would have been nice to have had someone to call for advice, to say, ‘Look, how can I help her? What can I do to reassure her?’ All I did was get angry, and then I felt bad for getting angry at her.” (Female, 60s, caring for her flatmate)

Hannah’s experience was echoed by other participants, who also expressed the pressing need for a clear contact point or a supportive person to consult. For many participants, simply knowing who to call and, as elaborated later, having someone to talk to during difficult moments would have alleviated caregiving-related challenges.

Accessible and user-friendly support channels

Participants also emphasised the importance of support channels that are more easily accessible, straightforward and user-friendly, especially for those without internet access. Mary reflected this sentiment, stating: “If there had been a helpline, a call line, it would have been so helpful if someone has a need for something or has a query, because not everyone had internet.” Although many participants, including Mary, demonstrated digital competence during the recruitment and interviews, they expressed a clear preference for traditional methods of communication, such as telephone helplines. These channels were perceived as more familiar, reliable and emotionally supportive compared to digital platforms. This preference underscored the need to prioritise accessible and inclusive support options that would cater to the diverse technological capabilities and comfort levels of participants.

Improved communication from formal support systems

Effective communication from formal support systems, including healthcare providers and government agencies, was identified as crucial. Informal caregivers in our study needed timely and accurate updates, as well as proactive “checking-in” on them. For some participants, it was highly appreciated when general practitioners (GPs) and clinics proactively checked in on them and provided some support during the pandemic. Fred explained: “The clinic did ring us a couple of times [during the lockdowns]. The clinic did ring us to see what was going on and if we were OK. That was great. They offered help if we needed” (male, 70s, caring for his wife). Even if Fred and his wife did not need any support at that time, they appreciated someone reaching out and checking in on them, especially when, for many, social engagements were reduced. This reinforces the need for emotional support and reassurance, as highlighted in the following section.

Emotional and psychological support

The emotional toll of informal caregiving is significant due to the nature of caregiving and informal caregivers’ personal circumstances,¹² which were exacerbated during the pandemic.¹³ For participants and care recipients alike, “calling” and “talking on the phone” were emotionally and practically significant, despite the availability of information and resources available online. Indeed, the importance of having someone to talk to for emotional support was a general finding in our study. Emma reflected this need: “I think just making it known who people can talk to is important. Probably we need someone who they can call to just talk and call for help for whatever” (female, 60s, caring for her husband and mother-in-law). Hannah expands on this and specifies the need for emotional support related to caregiving challenges:

“[My daughter] still rings me up and says, ‘Hey mum, now what’s the matter?’ It’ll be simple, like she dropped the milk and [it] went everywhere. But for her, I need to talk to someone about it. You know, I’m strong. I’m strong. My daughter says I’m a bitch, but I’m strong. But there comes a point where I’m just, that pandemic kind of brought that out. And that’s what made me, it makes you feel like a bad person. And we’re not; we just need someone to just talk to.” (Female, 60s, caring for her flatmate)

As Emma, Hannah and other participants noted, providing opportunities for emotional and psychological support, such as counselling services, peer support groups or even just “having someone to talk to on the phone” would help disconnected informal caregivers better manage stress and prevent burnout.

Dedicated support for informal caregivers

Despite the abundance of online information (see, e.g., Ministry of Social Development¹⁴ for available information and resources for informal caregivers), participants consistently highlighted the need for dedicated, tailored support for informal caregivers. Mary expressed frustration at the lack of clear guidance and personalised assistance. Lily also recounted her challenges with the existing Healthline service:

“It would have been good to have had a health helpline exclusively for [informal] caregivers, because often when I rang up on the Healthline, they would ask to speak to the patient. And he was not exactly aware of what was going on. And then they’d have to hand it back to me or the phone back to me to talk about it and discuss.” (Female, 70s, caring for her daughter and husband)

While some support services were technically available during the pandemic, they were often underutilised due to, as discussed, barriers such as inaccessibility, lack of visibility and misalignment with caregivers’ actual needs. The pandemic also altered the way support was delivered, with phone consultations and telehealth becoming more prevalent.¹⁵ Chloe, who had prior positive experiences with Healthline, appreciated its potential in a caregiving context: “I had used the Healthline once for me [in relation to a different health issue]. Yes, something like that might have been useful too [during the pandemic], particularly with the distance that we’ve got [here in a rural area]” (female, 70s, caring for her mother and close friend). However, such services typically focus on medical concerns but cannot assist with other caregiving-related or everyday challenges such as grocery shopping, bills and housework—issues that became even more pressing for participants during lockdowns.

Streamlined access to support by reducing bureaucratic hurdles

Participants faced bureaucratic challenges when trying to access fragmented supports, such as lengthy processes and strict eligibility criteria. Simplifying these procedures and reducing “red tape” would have made it easier for participants to obtain necessary assistance. Aki described these issues:

“I need to find a care support person myself when I need care support for a day. I had to search and call them myself to schedule the best visit time. In the midst of all this caregiving busyness, I had to manage everything on my own. It would be helpful if someone could take charge of these arrangements, like organising support from a specific time to another time, especially for tasks like changing diapers. If there were a structured way for someone else to handle this, it would be a huge help. Just organising that would be a great relief. I often have to make multiple calls if there isn’t a bed available, and sometimes I’m told there might be one later, even if there isn’t one right now. There’s a lot of paperwork to do before a visit, so I can’t just leave the house. While managing all this, I also have to co-ordinate with the care support person who might only be available for one hour. It’s quite overwhelming.” (Female, 50s, caring for her husband)

Aki underscores the need for a more streamlined and supportive system that can alleviate the administrative burdens on informal caregivers, allowing them to focus more on the actual care and less on logistics. The time and effort required to organise care support often exceed the benefits, as, for Aki, it took several hours to arrange a care person for just 1 hour of assistance (e.g., respite). Harper also described how navigating the system to access necessary support for her mother was fraught with administrative hurdles:

“Were we well supported? No, we just kind of [managed on our own], I think it was less stressful to just do it [ourselves]. Do what you need to do yourself. Like I said, there’s a lot of red tape for some of the things I’ve been trying to get for Mum.” (Female, 60s, caring for her mother)

The inefficiency may lead many informal caregivers, like Aki and Harper, to make the rational choice to forego available services and manage on their own despite the overwhelming nature of their responsibilities. This insight reveals why informal caregivers often prefer relying on personal networks over formal support systems, highlighting the need for a more streamlined and supportive system that can alleviate the administrative burdens on informal caregivers, allowing them to focus more on actual care and less on logistics.

Context-specific strategies

Participants’ experiences also highlight that support needs to be more adaptable to specific contexts, particularly during crises. As discussed above, some participants expressed that, during the pandemic, they needed practical support such as help with grocery shopping or someone to talk to rather than financial aid and additional information. Furthermore, several participants highlighted barriers to use available support, often rooted in concerns about health and safety. Many pre-existing supports required physical contact, which participants reduced or stopped using to protect care recipients and themselves. Brad spoke about reduced access to in-home care:

“[My mother] was worried, and we didn’t want her to get COVID-19. Even though she had all her vaccinations, I mean, she was as protected as anyone, but it could hit her badly. So, we stopped anyone [including home helpers, cleaners, gardeners, etc.] from seeing her. She was starting to get quite reclusive, which was probably not a good thing.” (Male, 70s, caring for his mother)

Like Brad, other participants mentioned the limitation of social engagements due to social distancing and other COVID-19 measures, which extended to professional in-home care support such as care agencies, respite services and home helpers—resources that were vital to their caregiving responsibilities. Despite their reliance on these services, no alternative strategies were introduced to address their absence during the pandemic, or simply these participants were unaware of alternatives.

Access difficulties were further exacerbated by systemic issues such as staff shortages caused by the COVID-19 measures.¹⁶ Ted noted this increased challenge: “The caregiving was harder [during the pandemic], because pretty much all the help we had before stopped” (male, 70s, caring for his wife). While study participants understood the pandemic situations, they preferred pre-existing traditional support that they were familiar with, highlighting the trust and reliability these services provided. The lack of alternative, or awareness of it, during the pandemic intensified the burden of caregiving, leaving participants to navigate their responsibilities with little/no external assistance.

Discussion: “call-it-in” as a conceptual solution

The findings reveal critical gaps in the support available to informal caregivers, particularly in navigating fragmented systems and accessing context-specific, emotional and logistical assistance. These challenges align with existing literature on the challenges of caregiving during crises and highlight opportunities for improvement in preparedness for future pandemics and disasters.^{3,5,6,11,17,18} The interplay of health management, altered social support and emotional impacts has been well documented, emphasising the pressing need for robust, tailored, culturally responsive support systems for informal caregivers.^17,19,20 While some participants acknowledged the value of services such as Carer Support and Home and Community Support Services (HCSS),²¹ many were unaware of these service providers and resources or found them impractical due to the need to independently seek and organise support within their allocated funding. Although this approach allows for individualisation, it often places an extra burden on caregivers who may be already overwhelmed. While our intention is not to overgeneralise, these findings were consistent across all participant groups, including Māori, non-Māori, rural and urban participants, highlighting the widespread nature of these challenges.

Existing frameworks like the New Zealand Carers’ Strategy Action Plan 2019–2023¹⁷ emphasise recognition and financial support for informal caregivers. However, our study highlights the need for a centralised, user-friendly system to streamline access and provide tailored assistance. Participants like Isabella and Mary expressed the importance of having a central point of contact—such as a dedicated helpline or call centre—that is designed to act as a bridge between informal caregivers and existing/emergent services. The “call-it-in” concept addresses these gaps by offering a single point of contact that integrates culturally and linguistically appropriate services, emotional support and practical assistance. This approach could be developed as an independent initiative or integrated into existing frameworks, with the primary goal of facilitating connections and addressing unmet needs. Drawing inspiration from screening tools designed for at-risk populations,²² the “call-it-in” approach would serve as a central hub, connecting informal caregivers to both formal and informal resources. Our findings contribute to the field, highlighting an approach that, while requiring funding and training, addresses gaps in both accessibility and emotional support, particularly in the context of the pandemic.^23–25

Key features of “call-it-in” include: 1) a national call centre, 2) the integration of existing and emergent support mechanisms, and 3) a triage system for prioritisation. Firstly, a dedicated national call centre would provide informal caregivers with timely assistance, reduce misinformation and streamline access to services. By offering a familiar and easily accessible platform, it would address informal caregivers’ immediate needs while reducing the stress associated with navigating fragmented systems and information available online. Secondly, to enhance the effectiveness of “call-it-in”, it should connect users to pre-existing and emergent community resources. For example, volunteer groups like the Student Volunteer Army (SVA), which played a critical role during the Canterbury earthquakes and the COVID-19 pandemic,^26,27 could provide practical support and resources such as grocery shopping or transportation services.²⁸ Lastly, implementing a triage system would ensure that support for informal caregivers is tailored to their unique circumstances and needs. By screening informal caregivers’ backgrounds, needs, stress levels and specific challenges, resources such as SVA’s grocery shopping services, local Māori health providers and peer support community groups can be allocated more effectively, ensuring timely and targeted assistance for those in (urgent) need.

While a “one-size-fits-all” approach is often not recommended, this centralised approach is particularly crucial, given that many informal caregivers in our study were simply disconnected from formal health systems and community groups and were unsure of available information and support options. Beyond practical support, “call-it-in” has the potential to enhance informal caregivers’ social capital. By facilitating connection between informal caregivers and formal as well as informal resources, it extends beyond bonding social capital (connections within close-knit groups like family or neighbours) to include bridging and linking social capital.²⁹ These broader networks provide mutual support and connect informal caregivers to essential services. Importantly, this approach acknowledges the challenges of pre-planning social capital, as disaster studies have shown that its mobilisation is ad hoc, driven by immediate circumstances rather than planned efforts.³⁰ Emergent groups like SVA exemplify how support networks may form organically during crises to fill the gaps in social and human services as needed. The “call-it-in” system could complement these efforts by providing a structured yet flexible platform for mobilising resources during crises, disasters and national emergencies.

Conclusion

Further exploration is essential to provide effective and practical support to informal caregivers based on their unique needs and individual circumstances. By addressing gaps in awareness, accessibility and emotional support, “call-it-in” can empower informal caregivers to navigate crises more effectively. Although we acknowledge this study lacks broad generalisability and poses a clear limitation due to the under-representation of Asian, Pacific peoples and other social groups, this approach may not only mitigate the potential negative impacts of informal caregiving during pandemics but also build informal caregivers’ resilience and wellbeing for future adversities. Proactively and spontaneously fostering connections between informal caregivers and support systems affirms the importance of dedicated, culturally and linguistically responsive and innovative solutions for this vital yet often overlooked population. The proposed conceptual solution as an example offers a centralised point of contact and support, which should be further developed, implemented and properly evaluated, particularly in ways that reflect the cultural diversity and diverse realities of informal caregivers.

View Appendix.