Making carers visible in healthcare

Family and friend carers are essential members of the care team who often provide invaluable medication management support to the people they care for.

However, pharmacists may perceive medication errors or non-adherence as a carer’s inability to fulfil this role,¹ instead of an opportunity for improving education and support. Ensuring that carers are identified by pharmacists as members of the patient’s care team, included in discussions about the patient’s care and supported to fulfil their role is key to ensuring quality use of medicines and optimal outcomes for patients and carers.

Across Australia, there are approximately 3 million carers who provide unpaid care or support to a family member or friend living with disability, mental illness, chronic or life-limiting illness, drug or alcohol dependency or who is ageing or frail.² This includes at least 391,300 children and young people under 25 years of age.² A carer may be a parent, partner, sibling, relative, child, friend or neighbour of the person requiring care. Carers come from all walks of life, and anyone can become a carer at any time.

Carers are diverse and each caring experience is different. Carers provide a wide range of supports to help the person they care for to remain living at home and in the community. They may also provide ongoing support for someone living temporarily or permanently in residential care. This support can include personal care, domestic assistance, support with navigating and coordinating health and disability services, emotional and social support, as well as assistance with communication, decision making and advocacy.³

Pharmacies are a common setting that carers visit with, or on behalf of, the person they care for. Carers may support with:

• filling or paying for prescriptions
• assisting someone to physically access or move around a pharmacy
• facilitating conversations and decision making
• enabling patients to access services, subsidies and rebates
• completing necessary paperwork
• ensuring adherence to medicines
• encouraging or reminding the person they care for to take their medicines
• monitoring for adverse effects
• advocating with, or on behalf of the person they care for where concerns about medicines or general health may arise.

While carers often have a high level of engagement with health care settings, including pharmacies, many report that they are not identified as carers, asked about their own needs or referred to appropriate supports in these settings.¹ Additionally, some carers may be even less likely to be identified by pharmacists as their caring roles may be less typical or traditional, or they may be less likely to self-identify due to fear of stigma or discrimination.⁴ These groups can include children and young people who are carers (young carers), culturally and linguistically diverse carers, LGBTQI+ carers, Aboriginal and Torres Strait Islander carers and carers who are living with disability themselves.

Research indicates that caring can have significant impacts on the health, wellbeing, financial security and community participation of carers.⁵ Carers report poorer health outcomes than non-carers, with over one-third of carers living with disability themselves, twice the rate of non-carers.² Research indicates that carers also often report preventable health conditions associated with higher morbidity and mortality including hypertension, diabetes, cardiovascular conditions, arthritis and depression.⁶

Over time, the impacts of caring may result in carer stress and subsequent increased risk of medication errors by carers. Early identification of carers by pharmacists and appropriate referral to carer-focused services and supports can promote optimal carer wellbeing and enable carers to fulfil their role. This in turn minimises the impact of caring and may reduce any potential associated medication risks to the carer or the person receiving care. Many carers report visiting a pharmacy at least once a week, highlighting pharmacists’ potential in providing carer support.¹

Additionally, given the significant role that many carers play in supporting the health outcomes of the person they care for, it is important that once carers are identified, they are treated as partners in care. Partnering with carers involves recognising them for their unique expertise and knowledge of the patient’s condition, needs and preferences, and including them in treatment planning and decision making.

Recent consultations with carers in NSW about their experiences in pharmacy settings indicated that acknowledgement and support in the caring role and exemplary quality and safety processes were associated with positive experiences within pharmacy settings.¹ Whereas, poor or inconsistent communication, errors in process or prescription dispensing and lack of pharmacist collaboration with other health professionals were associated with poor experiences.¹ These findings suggest that recognition of the caring role, effective communication with carers and other health professionals and the delivery of high-quality pharmacy services are key to fostering effective collaborative partnerships between pharmacists and carers.

While carers provide support to other people, it is also important to recognise that carers often also have their own needs, in relation to fulfilling their caring role, and also in attending to their own health and wellbeing. There are a number of opportunities for pharmacists to provide carers with support directly or refer them to appropriate services and supports in the broader community.

In particular, carers often have limited access to formal education or support around medication management or providing care more broadly. Pharmacists can play an important role in ensuring that carers are equipped with adequate skills and knowledge to feel confident supporting with medication management and enabling optimal health outcomes for the person they care for. Other medication management supports offered by pharmacists, such as preparation of dose administration aids, home delivery services and translated resources can also be offered to carers to support them in their role.

Due to the demanding nature of caring, carers may develop poor health habits and may delay or forego their own health checks or treatment to prioritise the health and wellbeing of the person they care for.^6,7 It is important that pharmacists encourage carers to look after their own health and wellbeing to minimise potential for health deterioration in the future. Health checks or screening services offered within some pharmacies may provide low-cost options for carers to check in around their own health. Encouraging carers to schedule regular GP appointments or follow up their own symptoms or health concerns with health professionals may also support improved health outcomes.

Carers may also benefit from accessing carer-focused services and supports that provide targeted assistance to alleviate the impact of the caring role. Carer Gateway (1800 422 737 or www.carergateway.gov.au) is the national service system for carers across Australia. Through Carer Gateway, carers can access a range of online, telephone and in-person support including information, counselling, coaching, peer support, planned and emergency respite and tailored support packages.

Carers may also be able to access information and supports from their relevant state and territory carer association (Carers NSW, Carers ACT, Carers NT, Carers QLD, Carers SA, Carers Tas, Carers Vic, Carers WA). However, available supports may differ in each state and territory depending on funding and current programs. Carers should be referred to their relevant carer organisation who can provide more information about what services are available.

For financial support, carers can contact Services Australia (www.servicesaustralia.gov.au/caring-for-someone, or the Disability, Sickness and Carers line on 132 717) to find out about what types of financial supports they may be eligible for, such as Carer Payment or Carer Allowance. Subsidies and rebates such as the Pharmaceutical Benefit Scheme (PBS) and Medicare Benefit Scheme (MBS) may also support carers and the people they care for to meet costs associated with healthcare.

Carers are invaluable members of care teams who support the provision of high quality and safe care. However, carers require recognition, education and support to fulfil this role. Ensuring that carers are identified, included and referred to support services is key for supporting their health and wellbeing and enabling them to continue in their caring role. To find out more about who carers are and how you as a pharmacist can identify and support carers, register for the upcoming Live Webinar: Identifying and supporting family and friend carers in pharmacy settings, Wednesday, 26^th March 2025, 7.00 pm to 8.00 pm (AEDT). You can also complete the upcoming e-learning module which will be launched in May.

References

1. Carers NSW (2025) The experiences of carers and pharmacists: pharma+C project consultation report, unpublished.
2. Australian Bureau of Statistics. Disability, ageing and carers, Australia: summary of findings – 2022. 2024. At: www.abs.gov.au/statistics/health/disability/disability-ageing-and-carers-australia-summary-findings/latest-release
3. Carers NSW. 2024 National carer survey, unpublished data.
4. Sibly C, Andersson C. Building the evidence base for the National Carer Strategy: rapid review of the evidence. 2024. At: https://engage.dss.gov.au/wp-content/uploads/2024/10/Stage-1-rapid-scoping-review.pdf
5. Carers NSW. 2024 National carer survey, national highlights. At: www.carersnsw.org.au/uploads/main/Files/3.Resources/Policy-Research/Carer-Survey/2024-National-Carer-Survey_National.pdf
6. Docker M, Alexander J. Developing a carer clinical profile to address health inequalities for family and friend carers. Presentation at the 3rd Asia Pacific Conference on Integrated Care. Sydney. November 2023.
7. Mohanty I, Niyonsenga T. A longitudinal analysis of mental and general health status of informal carers in Australia. BMC public health. 2019;19(1),1-16.