Experiences of Mental Health Carers Examined Using a Recovery Framework

ABSTRACT

Carers are a crucial support in the recovery of people with mental illness in the community. As they are often severely affected by the impact of mental illness of the person they care for, carers need to recover from the impact alongside the care recipient. While mental health services focus on the recovery of people with mental illness, carers’ recovery is largely neglected. Using the CHIME (Connectedness, Hope and optimism about the future, Identity, Meaning in life and Empowerment) recovery framework, the authors of this study aimed to examine carers’ experiences and what they needed in their own recovery. A mixed methods approach was used to analyse the responses of 1,918 carers who completed the Australian 2020 National Carer Survey. Thematic analysis was used to identify themes regarding carers’ experiences against the elements of CHIME. Quantitative findings regarding subjective wellbeing and perception of support were used to complement the themes. Themes aligned with CHIME but indicated poor recovery. Recognition (R) was found to be an important recovery factor for carers. Without adequately addressing the needs and wellbeing of carers and giving due recognition for their contribution, carers have difficulty progressing in their own recovery. CHIME-R may be appropriate as a recovery framework for carers.

IMPLICATIONS

• Caregiving needs and recovery of Australian mental health carers are largely neglected by mental health services and government departments.

• Recognition of carers should be taken into consideration as an important factor in carers’ recovery.

• Mental health and social services need to critically consider how they can promote family recovery, rather than focusing on the personal recovery of service users only.

KEYWORDS:

• Carers
• Family
• Mental Health
• Recovery
• Caregiving Needs
• Recognition
• CHIME
• CHIME-R
• Australia

Personal recovery for people with mental illness is well recognised in mental health internationally (Slade et al., 2012). Among many definitions of recovery, the Australian Health Ministers’ Advisory Council (2013) defined recovery as being able to create and live a meaningful life in a community of choice with or without the presence of mental health issues. As it is impossible to separate an individual’s recovery from the functioning of the family, researchers have called for a new focus on family recovery (Reupert et al., 2015; Wyder & Bland, 2014). Family recovery is as important as personal recovery since family members or carers have their own recovery journey with both similarities and differences from the affected individual’s recovery process (Price-Robertson & Reupert, 2016; Wyder & Bland, 2014). A carer is broadly defined as an individual who provides care and support to a family member or friend with a mental illness (Carer Respite Alliance, 2021). Despite the carers’ crucial role in supporting people with mental illness, the concept of recovery is rarely extended to carers and poorly understood (Hungerford & Richardson, 2013). Existing personal recovery concepts are useful as a first stage to support family recovery (Buckley-Walker et al., 2017), but questions remain whether they are fully relevant for carers.

One potential recovery framework is CHIME, which has been commonly used to guide mental health practice and research (van Weeghel et al., 2019). CHIME is an acronym of the five elements of the recovery process: Connectedness, Hope and optimism about the future, Identity, Meaning in life and Empowerment (Leamy et al., 2011). Connectedness refers to connections with supportive social relationships and the wider community. Hope and optimism about the future relates to having a belief in the possibility of recovery and the motivation for change. Identity is having a positive identity and overcoming the stigma of mental illness. Meaning in life refers to a broad range of finding valued meaning in goals and roles across social, occupational, and spiritual aspects. Empowerment means having control and personal responsibility over one’s treatment and life. Wyder and Bland (2014) suggest conceptually how the CHIME recovery process can help carers cope with the caregiving responsibilities, as well as taking care of their own welfare. Carers have a role to play in supporting the recovery of people with mental illness such as valuing their aspirations, focusing on their strengths and supporting them to make connections with others. At the same time, families need support for their own recovery journey by maintaining hope for themselves, keeping social networks, balancing their life with noncaring activities, and assuming control of their own lives. A recent study shows that recovery is embedded within family relationships and CHIME is a useful framework (Wyder et al., 2021). However, no large-scale study has been conducted to examine this family-based recovery framework in Australia. For this article, we used mixed methods data collected in the 2020 National Carer Survey to (1) investigate how the five elements of CHIME were represented in carers’ experiences in relation to service provision, and (2) identify what carers need to recover based on the framework. Mixed methods research was appropriate to examine the complexity concerning carers’ recovery in relation to service provision by using quantitative findings regarding carers’ wellbeing and perception of support, and qualitative responses.

Method

The 2020 National Carer Survey was conducted by Carers NSW, with support from the Australian State and Territory Carer Organisations. An expert advisory panel consisting of carers with lived experience and university researchers specialising in caregiving research provided input to the research design and process. The first author was a member of the panel and co-authors were staff of Carers NSW.

Data Collection

Participants were recruited through member, client, and subscriber databases of the state and territory Carer Organisations, the involved researchers, and their networks. To enable wider recruitment, the survey was advertised on social media. Participants needed to be 16 years or older, living in Australia, and providing care to someone living with a health condition, mental health condition, or disability, or requiring care due to ageing. Participants could either complete an online form or a physical questionnaire. A participant information sheet was provided to carers prior to them completing the survey. Consent was considered taken when participants returned the completed form. The study was approved by Macquarie University Faculty of Arts Human Research Ethics Committee (reference number: 52020623314360). Out of the 7,735 respondents in the survey, 1,918 participants indicated that they were providing care to someone using mental health services. This could be any form of mental health services such as psychiatric hospitals, psychiatric clinics, private psychologists or psychiatrists, private counsellors or social workers, and community mental health services. The inclusion criteria for this component of the study were carers of people who used any form of mental health services, living in Australia, and above 16 years old. The full report of the 7,735 respondents can be found at https://www.carersnsw.org.au/about-us/our-research/carer-survey.

Measures

The questionnaire was developed based on previous surveys (Carers NSW 2016 and Carers NSW 2018, https://www.carersnsw.org.au/about-us/our-research/carer-survey) and was revised to reflect the current Australian context. Due to the logical nature of a large-scale survey, participants may skip any question or provide a lot of details for open-ended questions. More information of the data collection process, questionnaire and previous surveys can be found at https://www.carersnsw.org.au/about-us/our-research/carer-survey.

This mixed methods study first focused on the qualitative responses (n = 916) collected from two open-ended questions. The two qualitative questions were (1) Please leave any comments you might have on your experience with mental health services (n = 613); and (2) Is there anything else you would like to tell us about your experiences as a carer (n = 484)? Second, this study examined the quantitative responses of the sample (n = 1,918) to complement the qualitative findings. The Personal Wellbeing Index (PWI) (Cummins et al., 2003) was used to assess the subjective wellbeing of the carers. The PWI examined life satisfaction in seven domains: Standard of living, Health, Achieving in life, Personal relationships, Safety, Community connectedness, and Future security. Scores ranged from 0 (completely dissatisfied) to 10 (completely satisfied) for each domain. Scores were converted to 0–100% points by simply multiplying by 10. Higher scores indicated greater satisfaction. To complement CHIME, we used certain domains of PWI as proxy for CHIME elements: (1) PWI Personal relationships domain and PWI Community Connectedness for Connectedness, (2) PWI Future security domain for Hope and optimism, and (3) PWI Achieving in life domain for Meaning in life. For Identity, we used an item from a set of questions that examined carers’ ability to find time for themselves: “I am able to take enough time out from my caring responsibilities to pursue my own goals and interests”. Its score ranged from 1 (strongly agree) to 5 (strongly disagree).

As CHIME empowerment is a complex construct and no item in the survey fully reflects the construct of empowerment, we used several items in the survey as proxy. First, the item “The mental health services received by the person I care for meet my needs as a carer” was used for Empowerment to identify empowerment from mental health services to meet caring needs. Its score ranged from 1 (strongly agree) to 5 (strongly disagree). Second, two items “I am asked about my needs as a carer”; and “give me a break from providing care” were used to identify empowerment from mental health services in supporting carers. Scores for these two items ranged from strongly agree—1 to strongly disagree—5. Third, carers’ experience of financial stress (no experience—0, one financial stress—1, two financial stresses—2, three or more financial stresses—3) also were collected for Empowerment. To complement an emerging theme found in the qualitative analysis, we analysed responses of two more items in the survey: (1) “I feel that my caring role is recognised and valued by service providers”, and (2) “I feel that my caring role is recognised and valued by the government”. Scores ranged from strongly agree—1 to strongly disagree—5.

Data Analysis

Thematic analysis was used to analyse the qualitative responses (Braun & Clarke, 2006). First, the researchers read the responses several times to familiarise themselves with the data. Then the first author developed codes based on the raw data focusing on the elements of recovery in relation to service provision segmented by each question (Guest et al., 2012). After structural coding by segmentation of words and/or phrases, common codes across both questions were grouped (Guest et al., 2012). Then the codes were used to derive preliminary themes against the elements of the conceptual framework. The theme that did not fit CHIME was presented as a possible new factor of the framework. The other authors subsequently reviewed the findings associated with the CHIME elements and agreed on the findings of each element. For quantitative data, descriptive analysis was conducted using SPSS version 26 (IBM Corp, 2019) to identify the sociodemographic characteristics and CHIME-related variables of the carers. Synthesis of mixed methods findings were presented in each CHIME element.

Findings

Out of 1,918 carers of people using mental health services, most were female (86.5%) and identified as Australian (79.9%). Their mean age was 54.5 (SD = 13.6) years old. More carers had completed Certificate/Diploma (37.9%) than other academic qualifications. Most carers were caring for their children or partners/spouses (see Table 1).

Carers assumed the role of a carer and needed to learn much to fulfil their caring responsibilities. Over time, some carers experienced recovery while uncertainty about the future always was around. Other carers struggled to cope with caring responsibilities and had few resources to consider their own recovery and future: “Recovery looks different and so does caring. I am now working but that would not have been possible without a significant recovery journey which took five years … I worry for our future”. The responses of the carers were found to be consistent with CHIME. The majority of the responses indicated that carers need support in every element of CHIME. Six themes and three subthemes are presented below that align with CHIME indicating poor recovery. Overall, all PWI mean scores were lower than Australian normative mean scores suggesting carers had lower subjective wellbeing than the population (see Table 2).

Table 1 Sociodemographic Characteristics of Carers and Caring Relationships (n = 1,918)

Sociodemographic variables		n (%)
Age	10 to 19	21 (1.2)
	20 to 29	38 (2.2)
	30 to 39	162 (9.4)
	40 to 49	402 (23.4)
	50 to 59	470 (27.3)
	60 to 69	372 (21.6)
	70 to 79	213 (12.4)
	80 to 89	38 (2.2)
	90 to 99	3 (0.2)
Gender	Female	1,503 (86.5)
	Male	222 (12.8)
	Nonbinary/gender diverse	7 (0.4)
	Prefer not to say	6 (0.4)
Education	Less than high school	271 (15.7)
	High school	195 (11.3)
	Certificate/Diploma	655 (37.9)
	Bachelor or higher	608 (35.2)
Cultural backgrounds	Australian	1,345 (79.9)
	Australian and other	86 (5.1)
	First Nations Australian and other	21 (1.2)
	Other	231 (13.7)
Caring for	Child (incl. adult children)	1,100 (57.6)
	Partner or spouse	459 (24.0)
	Parent or parent-in-law	172 (9.0)
	Brother or sister	66 (3.5)
	Friend or neighbour	44 (2.3)
	Grandchild	29 (1.5)
	Former partner	10 (0.5)
	Grandparent	3 (0.2)
	Other	26 (1.4)

Note: Age: missing 199, Gender: missing 180, Cultural backgrounds: missing 235, Education: missing 189; Caring for: missing 9.

Table 2 Personal Wellbeing Index of Carers of People Using Mental Health Services

	Carer sample			Australian population norm^a
	N	Mean	SD	N	Mean	SD
Global life satisfaction	1,766	51.42	25.92	1,963	76.34	16.18
Standard of living	1,772	59.06	25.82	1,962	81.17	15.43
Health	1,768	45.66	25.33	1,965	75.60	18.50
Achieving in life	1,764	46.03	25.69	1,960	72.43	18.77
Personal relationships	1,767	48.90	28.17	1,959	78.90	20.41
Personal safety	1,768	63.37	26.98	1,963	84.38	15.54
Community connectedness	1,765	47.12	27.80	1,957	70.55	19.99
Future security	1,763	44.58	29.33	1,948	71.92	19.48
Sum PWI	1,741	50.60	21.67	1,927	76.45	12.52

^a Khor et al. (2020).

Poor Social Connectedness

From the qualitative data, many carers felt socially isolated in their caring experience. This was complemented by the mean PWI Personal relationships score of 48.90 (SD = 28.17) and mean PWI Community Connectedness score of 47.12 (SD = 27.80). Both means were very low compared to the Australian population norm of 78.90 (SD = 20.41) and 70.55 (SD = 19.99) respectively (see Table 2). They perceived that they were alone caring for their loved ones. Those carers who had attended support groups felt that they could connect with other carers and had received relevant information and respite.

I have been a carer for more than 25 years … Over the years carer groups have given wonderful support. Meeting fellow carers with similar problems who became good friends as we shared ideas and helped and supported one another was a life saver.

However, some carers viewed online support groups as less effective than in-person groups in helping them to connect with others: “We were devastated when these [face-to-face] groups had to be cancelled! We don't see our understanding friends anymore now. The remote and faceless phone and online data do not replace what we have lost!”

Diminished Hope and Optimism About the Future

The PWI Future Security mean score of 44.58 (SD = 29.33) suggested carers were having diminished hope and optimism about the future. This mean score was lower than the Australian population norm of 71.92 (SD = 19.48) (see Table 2). Qualitatively, several carers did not see much hope or had minimal hope for their future. Their sense of hopelessness was related to their current severe financial problems, inability to work due to their caring responsibilities, physical health problems, loneliness, and emotional distress. Without addressing carers’ current concerns, having hope and optimism about the future was not possible: “It is so, so hard. No end in sight, not able to hope for things to improve … I'd love to have my own life again, to work and use my degrees … I'm feeling too emotionally tired and empty”.

Losing Identity

Only 19.8% of carers agreed or strongly agreed that they had taken enough time to pursue their own goals and interests (see Table 3). Qualitatively, several carers mentioned that they lost their identities as an individual or as a family member due to their overwhelming caring responsibilities and feelings of loneliness.

You lose touch with your own self of who you are. Just can't remember the things that matter to you, you want to do … and, if you get a spare moment, you simply don't know what to do with it.

I feel I have lost my identity as my son's mother.

Table 3 Taking Time Out, Caregiving Needs, Financial Stress, and Recognition of Carers of People Using Mental Health Services

		n (%)
Taking time out to pursue own goals and interests	Strongly agree	52 (3.0)
	Agree	293 (16.8)
	Neither agree nor disagree	383 (22.0)
	Disagree	500 (28.7)
	Strongly disagree	512 (29.4)
Meeting needs of carers	Strongly agree	40 (2.6)
	Agree	187 (12.4)
	Neither agree nor disagree	390 (25.8)
	Disagree	418 (27.6)
	Strongly disagree	477 (31.5)
Asked about needs as carers	Strongly agree	141 (8.1)
	Agree	319 (18.3)
	Neither agree nor disagree	292 (16.8)
	Disagree	443 (25.4)
	Strongly disagree	548 (31.4)
Giving break from providing care	Strongly agree	65 (4.2)
	Agree	187 (11.9)
	Neither agree nor disagree	333 (21.3)
	Disagree	466 (29.8)
	Strongly disagree	515 (32.9)
Experiences of financial stress in past 12 months	No experience	645 (38.6)
	One financial stress	321 (19.2)
	Two financial stresses	186 (11.1)
	3 or more financial stresses	518 (31.0)
Recognised by service providers	Strongly agree	121 (7.2)
	Agree	496 (29.5)
	Neither agree nor disagree	518 (30.8)
	Disagree	313 (18.6)
	Strongly disagree	234 (13.9)
Recognised by government departments	Strongly agree	52 (3.1)
	Agree	201 (12.0)
	Neither agree nor disagree	444 (26.5)
	Disagree	360 (21.5)
	Strongly disagree	618 (36.9)

Notes: Taking time out to pursue own goals and interests: missing 178, Meeting needs of carers: missing 406, Asked about needs as carers: missing 175, Giving break from providing care: missing 352, Experiences of financial stress: missing 248, Service provider recognition: missing 236, Government department recognition: missing 243.

Dissatisfaction Concerning Meaning in Life

The mean PWI Achieving in life score of 46.03 (SD = 25.69) suggested carers experienced dissatisfaction concerning meaning in life, which was lower than the Australian population norm mean score of 72.43 (SD = 18.77) (see Table 2). Qualitatively, several carers reported that they struggled to find meaning in life. They spent such a significant amount of their time and energy in caring that they could not develop a new meaning and purpose in life. Their caring responsibilities hindered them from finding meaningful work and connecting with others to achieve a social role.

It's hard. I don't know if people realise how hard it is. I struggle to find meaning in life because I feel I have so much potential to be making a difference in the world, but instead all my time is spent caring.

However, with sufficient support, carers were able to develop a new meaning in life.

I do not resent caring and have hopefully become a better person as a result. I am passionate to see circumstances in all systems improve for family or friend carers, and forever grateful to a carer organisation for the training and encouragement to be active to influence for better outcomes for carers.

Poor Empowerment by Services

More than half (59.1%) of carers reported that their needs were not being addressed by mental health services, indicating poor empowerment by services (see Table 3). Qualitatively, many carers felt that they were not empowered to recover from their own distress. Their health and wellbeing were neglected by services and by carers themselves. Without adequate support and engagement from mental health teams and social support services, carers perceived that they were not empowered to cope with caring to overcome their distress: “It is frustrating trying to get the support needed. It is quite difficult to even identify the help that one needs as a carer”.

Empowerment was more problematic for carers living in regional or remote areas with limited mental health services for their loved ones: “Very disappointing, time consuming, took me around 4 years to get a psychiatrist referral for my child, I live in regional but had to access services in metro”.

Carers expressed their need for empowerment in three specific service provision areas: the need to be listened to, the need to receive respite and practical help for themselves, and the need for help with finances through financial assistance or job support.

The Need to be Listened to

More than half (56.8%) of carers reported mental health services had not asked about their needs as carers (see Table 3). Qualitatively, carers reported mental health workers neither listen to them nor provide any form of family support: “[Mental health services] were not as family centred as I [had] hoped for. They have not checked in on supports available to me as a carer ever!”

They said mental health workers did not listen because of the constant change in workforce, not considering carers as important in treatment or their needs, and not respecting carers for their opinion: “Workers change very often. They don't have enough time to listen to carers and to understand our concerns”.

Some carers said that privacy was hindering them in caring for their loved ones with mental illness even with consent provided by the service users: “Dealing with mental health services is a nightmare. Carers do not have any rights—person's privacy is more important than their mental health”.

They also reported that mental health workers intentionally used privacy as a reason to exclude carers from treatment discussion, as workers did not value carers as collaborators in supporting the person with mental illness and blamed carers for any negative outcome.

I am sick to death of being excluded by the medical process for his privacy, yet that privacy is constantly breached when it suits the medical staff, especially when they decide to patronise or insinuate that the family should be doing more.

The Need to Receive Respite and Practical Help for Themselves

More than half (62.7%) of carers reported mental health services not giving them a break from providing care (see Table 3). Qualitatively, several carers mentioned that respite and practical assistance was helpful, but this type of support was not available in some geographical areas or not funded anymore: “Previously, access to various carer respite programs was good! These included daily activities both educational and recreational, and multiday getaway recreational and educational programs, which were much appreciated circuit breakers”.

The Need for Help with Finances Through Financial Assistance or Job Support

More than half (61.3%) of carers reported experiencing financial stress in the past 12 months (see Table 3). Qualitatively, many carers reported that they needed immediate and long-term financial support for themselves. They gave up their paid employment to care for their loved ones, which resulted in being financial dependent on others and government financial schemes.

It is hard work, and we need more financial and emotional support. We also need practical help to return to work. I have no superannuation and I need to return to work at some point. Support from the government to find a job or work while in a caring role needs to be a priority.

Those carers who wanted to return to the workforce would require support to look for suitable employment, especially women.

Women who have taken time out of the workforce to care for others are disadvantaged in a multitude of ways. My qualification and experience are out of date and employers do not want to employ middle-aged women with caring responsibilities.

Need for Recognition

In addition, the need for recognition emerged as a crucial factor. Many carers felt they were not being recognised by service providers (32.5%) and government departments (58.4%) (see Table 3). Qualitative findings showed that due to the lack of carer support, not being listened to, and being excluded from treatment discussion, they felt disrespected and devalued by the systems around them due to their caring role. They expressed a need to be recognised for their role, contribution, and sacrifice.

I believe there needs to be a greater recognition from the government and our community around the work of carers, and how much money we save the community. I feel I have little say or choice in being a carer. I feel society has shaped the narrative around caring, particularly for women.

Some carers felt that current mental health systems and government financial assistance schemes added more burden to devalue them. The lack of support was viewed as a poor recognition of their contribution as carers: “I still feel undervalued as a carer … but I don't even qualify for Carer Allowance, although I had to give up my job to care for her. It is not needing the money but the recognition of being valued”.

Discussion

The aim of this study was to identify how the five elements of CHIME were presented in the experiences of carers of people using mental health services. Themes were aligned with the elements of CHIME. However, the findings largely highlighted that many carers were not recovering and need more support in every element of the framework. In addition, we found recognition to be a crucial factor for carers’ recovery.

Many studies reported that carers need substantial support to cope with caregiving and managing their own distress (Luckett et al., 2019). This study showed many Australian carers were struggling to cope with caregiving. Their wellbeing and needs were largely neglected, consistent with Australian population-based studies (Diminic et al., 2018; Poon et al., 2017). More importantly, the lack of positive experiences in qualitative findings and low wellbeing scores indicated that carers’ recovery was likely not occurring. By examining each element in CHIME, this study identified several areas to support recovery.

The poor social connectedness theme highlighted the need for carers to connect with others. Our findings showed that there was still a huge demand for support groups. Support groups have been reported in the literature to be highly valued by carers as a good resource for connection (Petrakis et al., 2014). However, within the context of a series of reforms in the disability, mental health, and carer support sectors, there is a reduction in the availability of carer support groups, especially for carers of people with complex mental health needs co-occurring with a disability (Carer Respite Alliance, 2021, p. 21). From the literature, this shortage of support groups may be due to the poor availability of groups in some parts of Australia such as rural areas, cultural and language challenges for carers from culturally and linguistically diverse communities, or a lack of promotion of support groups to carers (Hussain et al., 2018; Poon et al., 2021). In addition, our findings showed that meeting in-person provided a way for carers to have a short respite from caregiving and enjoy recreational activities with others within the context of the increasing use of online support groups since COVID-19.

Our findings showed that many carers had no or little hope about the future, supported by the low mean PWI Future security score compared to the general population (Khor et al., 2020). Our findings clearly showed that without adequate support, carers could not develop hope and progress their recovery. With research positively advocating for service users’ hope in recovery (Murphy et al., 2022), it is equally important for the mental health field to consider and address the hopeless feelings in carers.

Only a small percentage of carers agreed that they could take time out to pursue their own goals and interests, which supported the possibility that many carers struggled to develop an identity beyond their carer identity. The qualitative responses from the carers indicated that the heavy caregiving role and their poor wellbeing over time influenced them to consider themselves to have a carer identity only. The literature shows that most carers are so overwhelmed in their role for a long time that they have limited energy to consider how they can recover by progressing their own identity beyond that of a carer or having hope and optimism about the future (Piat & Seida, 2018).

Qualitative findings and the low PWI Achieving in life mean score suggested that carers experienced difficulty in developing meaning in life compared to the general population (Khor et al., 2020). With adequate structural support and connections with others, it seems possible for carers to develop meaning in life, consistent with another study reporting structural issues affecting carers’ recovery (Wyder et al., 2021). In addition, the perception of themselves as carers may create a deep, meaningful purpose in nurturing their loved ones. This is promising as most carers are not able to move out of their role; therefore, supporting carers to develop meaning in caring may be a possible strategy to promote recovery.

Many carers felt that their needs were not met which indicated poor empowerment by mental health services. This study found three areas to empower carers. One area was related to carers wanting to be listened to in mental health services, overcoming privacy issues, and being included in treatment discussion. Two areas were in broader social services with carers needing financial support and practical help and respite. These identified needs are consistent with other studies demonstrating the importance of family-inclusive mental health practice and structural equality for carers (O’Hanlon et al., 2020). Family interventions including inclusive practice are important and effective, but barriers exist in providing them routinely in mental health services (Harvey & O’Hanlon, 2013). Similarly, financial assistance, employment, and respite care are available albeit limited (Poon et al., 2018). Based on the Fifth National Mental Health and Suicide Prevention Plan, greater efforts need to be made to help carers, as they are described in the Plan as “the backbone of community mental health” to support service users to “recover and live well in the community” (Commonwealth of Australia, 2017, p. 10).

In addition, this study found that recognition should be given a more prominent place in carers’ recovery. Recognition appeared to be missing in the current CHIME framework for carers (e.g., Fox et al., 2015; Wyder & Bland, 2014), although it was highly regarded by carers (Cree et al., 2015). Studies documented that carers de-prioritised many aspects of their lives, such as time for themselves, work, career, recreation, and social networks to assume their caring role and associated tasks (O’Hanlon et al., 2020). However, carers in this study felt that their contribution was not acknowledged by mental health services and government departments. In addition, mental health practice further devalued carers.

The relevance of recognition has been growing in social work literature, such as research in child welfare (Munford & Sanders, 2019) and disability (Fisher et al., 2021). Drawing on Honneth’s theory of recognition (Honneth, 1995), recognition has been conceptualised in three dimensions: individual level, where love and care is given to promote self-confidence; social and political rights, where an individual exercises citizenship; and social appreciation of an individual’s skills and abilities, and their contribution to their political and social life (Fisher et al., 2021; Munford & Sanders, 2019). Based on our findings, it may be possible that the recovery framework for carers should be CHIME-R with R as recognition of carers’ skills and lived experience, and their valuable contribution to their loved ones and mental health services. Recognition may even be the foundational factor as recognition is arguably essential in individual, social, and political rights, and social appreciation dimensions, which will contribute to supporting carers to recover in all CHIME elements. Further investigation is required to understand if recognition is one of the elements in CHIME or a foundational factor for carers’ recovery.

Implications

There are two key implications. First, mental health services need to consider carers as active collaborators, as well as individuals impacted by the effect of mental illness. This approach requires mental health workers, including social workers, to engage carers as “co-workers”, as well as addressing the needs of carers. To achieve this, mental health services should adopt a carer-inclusive approach to their work (O’Hanlon et al., 2020). To fully support service users living with mental illness in the community, service providers should consider carers as “partners in care”, as mandated in the Carer Recognition Act 2010 (Commonwealth of Australia, 2010) and equivalent state and territory legislation. Such an approach should consider the needs of carers in their own right and provide relevant resources to help them sustain the caring role. Second, as mental health services move into a recovery approach, carers’ recovery should be considered simultaneously (O’Hanlon et al., 2020). A holistic family-based recovery framework as a more suitable approach than individualistic patient-centred recovery is needed. Without supporting family recovery, it is potentially unworkable to support service-users, as long-term carer fatigue will dimmish the success of individual recovery. While some services exist that already follow such an approach, CHIME-R may be a useful tool for supporting more mental health service providers in promoting family recovery.

Limitations

There are several limitations. First, despite the large sample and wide recruitment strategy, the survey used convenience sampling, which limited the generalisability of the findings. Second, the sample was related to carers of people using mental health services rather than carers of people with mental illness. Third, participants were allowed to skip any questions in this large survey resulting in incomplete data for some cases. Fourth, the study did not ask participants specifically about recovery. The concept of empowerment is complex, and the items used as proxy for this concept may not be the best measures. This is because the CHIME definition of empowerment of having control and personal responsibility may be different to empowerment by receiving adequate services and meeting needs. Future studies should consider using measures with specific recovery items, especially to assess empowerment properly and identify the importance of recognition to explore the relevance of CHIME-R for carers.

Conclusion

As the recruitment of participants was nationwide through state and territory Carer Organisations, universities, and social media, the study recruited a large sample of carers. Therefore, this study has provided significant insight about the recovery of carers, specifically through the framework of CHIME. The challenges of carers and the complexity of their recovery also raise questions about CHIME being too optimistic and a need to modify the framework (Piat & Seida, 2018). This study identified that CHIME-R may be a more relevant framework for carers’ recovery.

Acknowledgements

We acknowledge and thank the carers who participated in the Carers NSW 2020 National Carer Survey on which the findings are based. The Carers NSW 2020 National Carer Survey was funded by the NSW Department of Communities and Justice and conducted with support from the State and Territory Carer Organisations.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was supported by NSW Department of Communities and Justice.