The state and nature of carer research: a carer-led scoping review

• Inclusion of carers, families, supporters and kin in service delivery was the most common research topic across peer-reviewed studies: 37% (56) focused on how services should or could include carers in service delivery, such as related to specific diagnoses or clinical care settings (emergency departments in a crisis or integrated community care). Others focused on models of care or particular points in the carers’ or consumers’ engagement with services (e.g., admission or discharge). Most of this literature highlighted what services do not currently offer carers.  

• Carer wellbeing and experiences of caring was the second most common topic across peer-reviewed studies: 24% (36) focused on experiences of caring or carer wellbeing.  

• Grey literature was not aimed at family carers in the community: but instead focused on providing information for service providers, Government agencies, regulatory bodies and family carer workforce and advocates.

• A minority of peer-reviewed studies were written by carer family researchers: only 4% (six) of the 152 studies were identified as being written by carer experts, who were writing explicitly from their lived experience.   

• Some peer-reviewed studies failed to recognise carers as authors: in 11% (18) of the studies, carers were involved in multiple parts of designing the study (i.e. methodology or conceptual framing) and the research process (i.e. data collection and analysis), but they were not recognised as authors.   

• Some studies did not include carer participants: 7% (11) of carer focused research studies did not actually engage family carers as part of data collection.   

• There was a lack of research with an intersectional focus: such as supporting someone experiencing mental health challenges with alcohol and other drug experiences and/or involvement with forensic or correctional settings. Research also rarely explored the experience of being both a carer and consumer.  

• Research structures are constrained: such structures force individual academics to claim authorship ahead of lived experience counterparts for career progression. There is a historical lack of opportunities for family and carer research leaders.  

• Research frequently ignores the complexity of the carer experience.  

• There is little research related to and driven by young carers: such as children of parents with mental illness, young carer workforce and young carers aged 18-30 years.  

• The conceptual framing of the research impacts its usability for family carers: it is often very medicalised and concentrated on improving programs and services, rather than focusing on family carers, their perspectives, needs and curiosities and how economic and social factors affect their wellbeing or distress.

This report identified several barriers for family and carer researchers, including:  

• limited visibility of family carer researchers  

• limited educational or vocational pathways  

• limitations to funding  

• systemic positioning of families and carers as unpaid contributors  

• unclear return for effort. 

The report identified several enablers for family and carer researchers, including:  

• strong allies across disciplines  

• prioritising upskilling for families and carers who want to lead or participate in research  

• sharing power between people who are academic researchers and those who aren’t, or those who don’t have positions of authority  

• researchers taking the time to know the family carers that they are working with  

• using contemporary language in research 

• providing safety in the research process   

• building trust between researchers and family carer collaborators   

• supporting research that aligns with family carer advocacy goals, or that contributes to building advocacy or change using participatory methodologies. 

The review identifies specific opportunities and recommendations related to carer focused and inclusive mental health services. It also highlights priority research areas to develop and resource, ways to engage and ways to translate and disseminate family carer research. These opportunities are specific to the Victorian Collaborative Centre for Mental Health and Wellbeing, but are also applicable to other organisations. 

Research Priorities: 

• Fund First-Nations-led research frameworks. 

• Support young carers research groups, ensuring mentoring is a component of all research projects. 

• Create inclusive pathways for families/carers to co-lead research. 

• Prioritise research on the experiences of regional, rural and remote family, carers, supporters and kin. 

• Fund research co-led by culturally and linguistically diverse family/carers. 

Ways to engage: 

• Fund and prioritise family/carer projects that allow for “slow research” with generous timelines. 

• Fund lived experience researchers to co-produce new ways for procuring their services. 

• Use inclusive definitions of expertise, knowledge and research. 

• Support participatory research frameworks. 

• Prioritise projects that promote greater understanding of how power operates and impacts family/carers and the carer workforce in mental health, research and reform systems and spaces. 

Ways to translate and disseminate: 

• On any project, develop and utilise ‘good research’ guidelines co-developed with family carer participants, including information on keeping family carer participants updated with the research impact. 

• Fund family carer and carer researchers to develop mechanisms and guidelines that ensure carers are named as authors on research. 

• Partner with existing research ‘ponds’ to collaborate. 

• Host or co-host research seminars, conferences or forums that platform contemporary carer-led research. 

• Consider building research translation functions that enable innovative family/carers ideas to be converted into new, evidence-based practice approaches. 

Service delivery: 

• Ensure clear, co-designed policies for family and carer access, engagement and support. 

• Consider using available resources, guidelines and tools. 

• Provide carer peer support and advocacy services, and increased emergency and respite funding. 

• Ensure trauma-informed care for is available for carers. 

• Improve staff training on confidentiality and privacy policies. 

• Identify and include young carers in treatment plans. 

• Invest in research, legislation and proactive education and advocacy on carer rights. 

• Include families in recovery models. 

• Use measurement tools developed by carers when capturing information for the purpose of carer-related service improvement. 

• Develop culturally inclusive and safe practices.

The project was led by a collective of family carer researchers, and the project team that commissioned the report included two staff working in designated lived experience roles. To supplement the scoping review, the study involved consultations with 18 ‘family carer collaborators’ who were members of FaCRAN. To join FaCRAN, members self-identify as a family carer researcher, a carer interested in research or a research ally to family carers. The consultations consisted of one conversational focus group with 15 attendees and three one-on-one, semi-structured interviews. The consultations were run from Victoria, but included carers across four Australian States, based in regional and metropolitan locations. To ensure diverse experiences and perspectives were included, the consultations had representation from family carer researcher elders (people in a carer advocacy or research roles for over 10 years), non-academic people with interest in family carer focused research, newly established or establishing young family carer researchers, and individuals that had perspective as both a consumer and a carer.  

The focus group and interviews included family carer research collaborators working in university settings, government, and mental health service provision. Some were independent or community-based advocates or researchers.

The project used a scoping review, or a broad overview of the existing literature to find out what is known and what gaps exist in family carer research. In total, 152 peer reviewed papers and 46 grey literature sources (total = 198) were included in the review.