Partnering with carers in mental healthcare

Purpose

The Royal Australian and New Zealand College of Psychiatrists (RANZCP) has developed this position statement to affirm the importance and value of respectful and cooperative partnerships between psychiatrists and carers[a] , and recognise that these partnerships are necessary to ensure the provision of an excellent standard of care.[1] This position statement has been co-designed by those with lived experience of a mental health condition and psychiatrists to outline some of the key aspects and considerations of the partnership between carers and psychiatrists.

Who is a carer?

The RANZCP identifies a carer of a person who is experiencing a mental health condition as:

A family member, whānau, aiga, friend or another person whose life, because of their active caring and supporting role, has been affected by their close association with an individual who has, or who has had, experience of a mental health condition.

The RANZCP recognises that carers are at the heart of a compassionate, empathetic and supportive society. Carers play a central role in the care and recovery of people who are experiencing a mental health condition.[2] Carers can also play a key role in mental healthcare service improvement, and to addressing safety concerns in relation to social circumstances, treatment and other contextual factors. [6]

A person experiencing a mental health condition may also have more than one carer, often known as a support person, who together with the primary carer provide supports for the individual.[4] These may include family/whānau/aiga/friends or others, who along with primary carers provide care to the person experiencing a mental condition.[7] It is important that psychiatrists and multidisciplinary teams are able to work effectively with both the primary carer, any secondary carers or extended care network.[8] Carers in Australia should be aware that The Australian Carers Recognition Act 2010 includes provisions that health service providers must give carers sufficient information to assist them in their carer role.[9] In addition to recognition, carers may be eligible to access financial, study and other supports to support them in their role as carers.

The role of psychiatrists

Psychiatrists should work optimally with carers and their communities, acknowledging carers as an integral part of the recovery process.[10] Carers also have their own needs related to their caring role, which should be considered and addressed to ensure they are appropriately supported.[11, 12]

Early in the care relationship, psychiatrists will carefully enquire about the nature of familial and carer relationships, striving to take into consideration protective factors, strengths, conflict and/or other issues such as trauma, abuse and family violence.[13] Psychiatrists must take appropriate time to discuss with the person experiencing a mental health condition who their nominated carer or support person is, noting that this may or may not be a relative.[14]

Identifying carers

It is the role of the psychiatrist to help the person experiencing a mental health condition identify their carer network; and who the person experiencing a mental health condition, feels would be beneficial to their wellbeing.[14] This includes who is in their carer network, and any person within that network that they want included in shared decision making. This process can be complex, and it may take some time to gain a full picture of an individual’s support networks, particularly for those who have limited networks, or access to their supports. Relationships can also change over time and psychiatrists should view the maintenance of partnership with carers as an ongoing process, keeping carers in mind throughout the process as part of their model of care.[1]

Providing information

Within multidisciplinary teams, psychiatrists may work in partnership with other health professionals to support carers and provide them with applicable information. As identified in various inquiries and reports, health systems and services can be complex to navigate and many carers are unaware of services and resources available to them, or are not always included, listened to, or consulted when they attempt to seek help.[15, 16]  Even those who are aware may still be confused about eligibility and how to apply for services.[15] 

Psychiatrists should create an environment where carers are welcomed, consulted, and where people experiencing a mental health condition are kept informed and encouraged to give consent to any information shared with carers.[17] Psychiatrists can also provide advice to assist carers cope with stress and anxiety that may arise as a consequence of their caring role. This support could include information regarding Carer Peer Support Workers (CPSWs) and relevant peer support groups. [18]

Considering carer health and wellbeing

There is considerable evidence that carers may experience worsened physical and mental health outcomes over time.  [19, 20] Caring can be rewarding, but may also carry a variety of direct or vicarious impacts.[21] It is important that psychiatrists recognise this, and that in addition to providing treatment for the person with a mental health condition, they provide support and advice to the carer/s so that they know how to maintain their own health, including strategies for maintaining wellbeing, options for respite and/or locating local support programs.[22] In addition, carers should ensure that they have regular physical and mental health checks and that they regularly see their General Practitioner, not only when they are in difficulty.[23]

Education and training

Psychiatrists should encourage the development and dissemination of education and training programs which are responsive for carers on ‘how to care’. These resources should include developmentally appropriate information for young carers.[22] Education should also be available for health practitioners on how to include carers in ongoing treatment and how to utilise mediation skills when handling situations involving conflict or tension between carers and those experiencing a mental health condition. [24]

Carer diversity

Cultural considerations

In Aboriginal and Torres Strait Islander communities, there may be existing kinship and care relationships in place, which are important to understand and factor into care arrangements.[25] For Māori the centrality of whānau within community mental healthcare is an essential consideration for psychiatrists.[26, 27] For more information, see RANZCP PS104 Whānau Ora.

In some culturally and linguistically diverse (CALD) communities, family inclusion is a culturally expected aspect of any communication with service providers, and respecting this is part of culturally-appropriate support, engagement and trust. [28, 29] Across some CALD groups it may take some additional time to ascertain who is ‘carer’ for a particular individual. The concept of carer may not be easily translated into some cultural contexts and additional time may be required to explain the legal implications of being the nominated/support person for an individual.[30] CALD carers must not be expected to act as translators during medical consultations, due to cultural or familial confidentiality issues. Both health professionals and CALD people need to be aware of their rights and responsibilities with regard to accessing quality interpreter services.[24]  

Translators and interpreters need to be trained in mental health terminology to equip them with an understanding of and sensitivity towards mental health conditions, which is also another way of reducing stigma.[24]  Carers also need to be provided with a choice of access to an interpreter, either by face-to-face or telephone.[31] For some communities, it can be challenging to obtain appropriately qualified interpreters, hence a member of the community is generally utilised. Psychiatrists should also give consideration to engaging relevant support workers, such as Aboriginal, Torres Strait Islander and Māori mental health workers and/or other CALD mental health support workers (bi-lingual workers).[32] These professionals are trained to assist in the facilitation of communication between health professionals and carers and should be seen as an important stakeholder for psychiatrists.

In conjunction with the above it is very important that information and support is made available in different languages and communicated through Indigenous led medical services and/or appropriate CALD organisations, to ensure that carers receive information and support in their own language and in a manner that is culturally relevant.[25, 33] Information should be disseminated in a variety of mediums to ensure equality of access for all carers.[23]

Rural and remote

Carers in rural and remote locations may find it difficult to access continuity in service provider as there is often limited access to choice of and breadth of services, leading to the need to re-engage health practitioners to ensure carers remain partners in the treatment plan. [26]  Because of accessibility problems family members/carers often travel considerable distances to assist the person experiencing a mental health condition to attend their appointments with health practitioners. [34] In circumstances where telehealth is utilised, psychiatrists should consider how they can effectively engage carers, for more information see RANZCP Professional Practice Standards and Guides for Telepsychiatry.

LGBTIQ+

Psychiatrists should aim to identify the members of an individual’s support network, considering family/whānau who may play a key role but are often overlooked due to sexual orientation, gender identity or intersex status.[35] The discrimination and marginalisation experienced by LGBTIQ+ people increases the risk of developing mental health conditions, and also creates barriers to accessing supportive services. LGBTIQ+ people may also have a lived experience of their sexual identity being defined as a mental disorder or abnormality. There is still a significant amount of work to be done in fostering a more inclusive culture. For more information see the RANZCP Position Statement 83: Recognising and addressing the mental health needs of the LGBTIQ+ population.

It is important to recognise non-traditional family structures which may take many shapes.[36] Psychiatrists should maintain an up-to-date understanding of the key issues for this population, including the prevalence of mental health conditions and the importance of making sensitive enquiry, avoiding assumptions, and using inclusive language.

Age and stage

Where children and adolescents are being cared for, support for families and/or guardians where relevant is particularly important. Outcomes can be greatly enhanced where psychiatrists effectively communicate information about the child/adolescent’s prognosis, risk factors and strategies for engagement for the parent’s and/or guardians and where they are involved in the care, treatment plans and discussions around care.[13] Psychiatrists should ensure that when adolescent clients transition to adult services, that appropriate notes and information on engagement with family and carers are provided to ensure effective handover and transfer of information to appropriate services. For more information see RANZCP Position Statement 64: The role of psychiatrists in the prevention and early intervention of mental illness in infants, children and adolescents.

Young carers, particular CALD young carers, can face barriers within the mental health system due to some health practitioners and allied health professionals not effectively recognising or adequately acknowledging that young people are carers. [37, 38]  In addition to having poorer physical and mental health than their peers, young carers experience difficulty completing their education and many experience financial difficulties.[39] Carers who are minors are often socially isolated and the demands of caring may affect their social and emotional development and life opportunities. See also RANZCP Position Statement 56: Children of Parents with a mental illness.

Older carers and carers of older people also face particular challenges.[40] Increasing age may be associated with increased resilience but it is also associated with physical, social, cognitive and developmental changes that can affect their role and support needs as carers.[40] In these circumstances, a carer may have significant health problems of their own and 'co-caring' is not uncommon.[40] If the individual experiencing a mental health condition also has dementia this may pose additional challenges.[41]

Recommendations

The RANZCP makes the following recommendations to ensure that carers receive appropriate support and services to assist them in their role:

• Psychiatrists actively seek to identify the carer/carer network and encourage multidisciplinary teams to engage carers and support them through the provision of education and information to assist them in their role as a carer.
• Psychiatrists lead in the development of processes to manage handover of care and information relating to the carer/carer network (including contact/relationship details); when handover occurs there is an agreed process to inform carers and explain any changes to care plans.
• Psychiatrists enhance their own practice through reflecting on areas where they can improve their communication with carers and seek relevant continuing professional development to improve their ability to engage with carers.
• Psychiatrists encourage people experiencing a mental health condition to develop advance directives, or similar documents, to assist medical staff, alert carers, and provide prompt treatment when required.
• Governments, hospitals and health services ensure effective and relevant responsive education and training is available for all members of the multidisciplinary team on the role of carers in assisting the treatment and recovery of a person experiencing a mental health condition.
• Governments ensure funding for all carer support services is provided at the level required, including those for high needs populations (Indigenous, CALD, LGBTIQ+, rural and remote services, and young carers).

Additional reading

Ministry of Social Development/Te Manatu Wahakahiato Ora Mahi Aroha. Carers’ Strategy Action Plan 2019-2023.

New Zealand Carers ‘A Guide for Carers’ He Aratohu mä ngä Kaitiaki; n.d.

College of Psychiatrists of Ireland. Who cares? Listening to the needs and experiences of carers of people with mental illness; 2013.

Mental Health Carers Arafmi Australia and Mental Health Australia. A practical guide for working with carers of people with a mental illness; 2016.

Victorian Government Department of Health and Human Services. Working together with families and carers: Chief Psychiatrist’s guideline; 2018.

Australian Government, Carer Gateway; 2020.

Daya, I., Hamilton, B., and Roper, C. Authentic engagement: A conceptual model for welcoming diverse and challenging consumer and survivor views in mental health research, policy, and practice; 2020.

Responsible committee: Community Collaboration Committee 

[a] The terms ‘carer’ and ‘consumer’ are used where differentiation is required for the purposes of document clarity. The RANZCP acknowledges that both carers and consumers have a lived experience and that the roles are not mutually exclusive. The RANZCP also acknowledges that ‘carer’ and ‘consumer’ may not be the preferred terms of individuals.

[b] Whānau’ (pronunciation: fa:no) is a Māori word used to describe an extended family group spanning three to four generations. The whnau continues to form the basic unit of Māori society (Rāwiri Taonui).

[c] Aiga - The term Aiga as used in the Samoan sense includes not only the immediate family, father, mother and children, but also the whole union of families of a clan and even those who although not related are yet subject to the family control. (Victoria University).

References

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Disclaimer: This information is intended to provide general guidance to practitioners, and should not be relied on as a substitute for proper assessment with respect to the merits of each case and the needs of the patient. The RANZCP endeavours to ensure that information is accurate and current at the time of preparation, but takes no responsibility for matters arising from changed circumstances, information or material that may have become subsequently available.