Implementing national mental health carer partnership standards in South Australia

In any given year, almost 2.5 million people care for a person with mental illness in Australia as a person’s parent, spouse, child or other close kin or friend.¹ Carers are key sources of knowledge and information about the person’s symptoms and physical and social needs, they know the person both well and unwell, they are able to identify early signs of relapse and are the primary source of ongoing support. As such, carers have a vital role in the person’s recovery, given that recovery occurs within a social and interpersonal context.² However, carers also have their own needs for support that, if not addressed, can undermine their capacity to care and enable recovery.^3,4

Over the past two decades, considerable advances have been made to formally recognise the value, role, rights and needs of carers, along with the importance of partnerships between mental health service providers, consumers and carers. The requirement for mental health services to engage in partnerships with carers is embedded in Australian mental health legislation and policies at national, state and territory levels.^5,6 However, studies suggest that there remains a significant gap in practice in involving carers effectively in the care process.^7–9 A common theme in the research literature is that many family carers feel excluded by healthcare clinicians and facilities from processes of assessment, treatment planning and care, and that partnering with carers in a meaningful way is a major challenge for providers.^10–13 This is despite the numerous studies highlighting that carers want to work in partnership with providers, integrate their perspective into the care of the consumer and need recognition of their role, validation of the difficulties they face in providing care and access to support services.^3,10

There are many reasons for this considerable gap between mental health policy and the experiences of carers in practice, with the skills, knowledge, attitudes and work practices of clinicians frequently cited as barriers to carer participation.^8,9,14 Research has suggested clinical attitudes and practices are strongly influenced by the biomedical paradigm, within a medicolegal environment, which promotes an individualised focus on the consumer and with concepts of recovery situated in the consumer’s personal and unique journey.^2,15 This can preclude a more holistic focus on the consumer as part of a social system in which the consumer’s daily relationships are vital to recovery.^16,17 Therefore, adopting a partnership approach requires cultural change to shift ingrained practice within mental health services.^4,9 This is vital given that there also remains a limited understanding of how to apply policy intent in practice.^7,18

As a tool to support clinicians to engage and partner with family carers in a meaningful way, and thereby influence change in practice, A Practical Guide for Working with Carers of People with a Mental Illness (hereafter the Guide)¹⁹ was created by a consortium of lived-experience experts in mental health, including Helping Minds, Mind Australia, Private Mental Health Consumer Carer Network (Australia) (PMHCCN), Mental Health Australia and Mental Health Carers Australia. Drawing on previous work undertaken in Australia and internationally, the main aim of the Guide is to provide practical assistance to service providers to work with carers in partnership to enhance outcomes for consumers. The Guide is consistent with Australian mental health policy and legislation, containing workable information related to partnering with carers as described in both the 2010 National Standards for Mental Health Services²⁰ and the 2012 National Safety and Quality Health Service Standards.²¹ This information is captured as six carer partnership standards within the Guide (see Box 1). The Guide includes a self-assessment tool to enable services to monitor their progress towards meeting the standards, as well as six e-learning modules, each of which explores one of the partnership standards.

In South Australia, two projects using the Guide have been undertaken, one each at a private and public mental health service. The aims of the projects were to: (1) evaluate the services’ current understanding and practice against the standards from the perspective of staff and carers; and (2) measure whether, and to what extent, exposure of staff to the standards and associated training modules comprising the Guide improved staff’s engagement with carers from the perspective of staff and carers.

Senior clinical staff in each service were included as project team members in order to foster improved buy-in and collaboration by the services to implement the projects into the practice settings, and to promote positive cultural change towards greater partnership with carers following project completion. The projects involved surveying family carers and clinical staff before and after staff exposure to the Guide and the learning modules. Hence, this paper describes the current state of carer engagement in relation to the partnership standards in these two mental health services from the perspectives of carers of people using the services and of clinical staff within the services.

The first study was approved by the Flinders University Social and Behavioural Research Ethics Committee; the second was approved by the Departments of Defence and Veterans’ Affairs Human Research Ethics Committee and the Southern Adelaide Clinical Human Research Ethics Committee.

Anonymous surveys were developed for clinical staff and carers, who were invited to complete the surveys online in SurveyMonkey or on hardcopy. Participant consent was provided by completion of the online survey or the return of the hardcopy survey via reply paid post to the research team.

Carer surveys sought participants’ perspectives of interactions between staff of the mental health services and family carers of people who use those services, and the degree to which interactions align with the partnership standards. Demographic data were not collected. Participants were asked to rate their experience as a carer to a series of questions directly related to the partnership standards on a four-point Likert scale with potential responses of ‘all of the time’, ‘most of the time’, ‘some of the time’ and ‘never’. The survey questions were developed by the lived-experience members of the research team (JM and SL), one of whom is a mental health consumer and the other a mental health carer. Both are directors with the PMHCCN and presented the draft survey questions to the PMHCCN Board for group discussion and finalisation. This process helped ensure that questions were worded to ‘speak’ to carers completing the survey and that survey response burden was minimised. Participants were invited to provide further comments in relation to each partnership standard, along with general comments about how the service could improve its engagement with or provide support to carers. Methods to recruit participants included direct distribution of information by the mental health services and through the e-newsletter of the PMHCCN.

Clinicians were invited to identify their occupational group and to rate their current practice in relation to the self-assessment questions anonymously online in SurveyMonkey using a five-point Likert scale with potential responses of ‘all of the time’, ‘most of the time’, ‘some of the time’, ‘never’ and ‘unknown’.

After the preintervention survey data had been collected, clinicians were invited by their clinical management to read the Guide and complete the online educational modules accompanying the Guide. Postintervention surveys were administered 3 months after exposure to this education. The pre- and postintervention surveys contained the same questions and were not matched because they were anonymous. The timeline for the surveys and exposure to the Guide and e-learning modules is shown in Fig. 1.

Fig. 1.  Project timeline.

For the purpose of this paper, to address the first study aim, data analysis focussed on key findings drawn from the preintervention survey data using the frequency and percentage of answers for each scale in each question, together with themes from the comments. Thematic analysis, following the method described by Braun and Clarke,²² was used with the comments. A comparative analysis of staff and carer preintervention survey data for the private service only was undertaken using the two-sample Z-test of proportions. This was conducted using SPSS v23.0 (IBM Corp., Armonk, NY, USA) and its purpose was to test for alignment (or not) between the perceptions of the two groups of participants regarding the use of the standards in practice. The scale of ‘unknown’ used in the clinician survey was omitted but did not affect Z-test results because actual numbers were used for the comparisons rather than percentages. There was no comparison for Partnership Standard 4 because data were collected from clinicians only.

To address the second study aim, data analysis focused on changes in carers’ perceptions and staff perceptions of their practice in regard to carer engagement and partnership processes within the two mental health services. However, low pre- and postintervention survey response rates within the public facility and a low postintervention survey response rate for the private service limited any statistical analysis of overall changes in perceptions.

Forty-four carers (n = 36 and 8 before and after the intervention respectively) participated in the survey for the private mental health service, compared with 14 (n = 8 and 6 before and after the intervention respectively) for the public service. Overall, the results were mixed, with responses broadly reflecting a diversity of experiences within the two services. There was minimum discernible change in perceptions across the two time frames.

For the private service, 40 clinicians completed the preintervention survey and seven completed the postintervention survey. Most were nurses (n = 34 and 7 before and after the intervention respectively). For the public service, 32 staff completed the preintervention survey and 15 completed the postintervention survey; over half were nurses (n = 17 and 8 before and after the intervention respectively), with others identifying as psychiatrists, allied health and medical registrars. Again, there was minimal discernible change across time frames. The survey results suggest that carers have similar experiences across the two services, with an overall sense of the carer feeling invisible in the recovery process (Table 1).

Table 1.  Key findings from carer preintervention surveys (private and public mental health facilities in South Australia) in relation to carer partnership standards
Participants were asked to rate their experience as a carer to a series of questions directly related to the partnership standards on a four-point Likert scale with potential responses of ‘all of the time’, ‘most of the time’, ‘some of the time’ and ‘never’. Total number of carers who responded: Private facility, N = 36; Public facility, N = 8. GP, general practitioner

Survey results for clinicians suggest that far more work is needed for each service to meet the partnership standards. The range of responses to each question, and the large number of participants stating that they did not know (‘unknown’), suggests an inconsistency in both the knowledge of carer policies and their application in practice. Three key themes emerged from the comments that reinforce the comments from carers. These were: primacy of consumer consent and autonomy; not the role of nurses; and someone else’s role. A significant number of public service participants ‘skipped’ questions in the surveys; that is, they commenced and submitted the survey but did not select a response to some or all of the questions. Most of the skipped questions were in surveys returned by mental health nurses, with each question skipped by between seven and nine of the 17 nurses completing the surveys. The response rate for individual questions was far better in the private service. Table 2 details the key findings from the clinician preintervention surveys for both services.

Table 2.  Key findings from clinician preintervention surveys (private and public mental health facilities in South Australia) in relation to carer partnership standards
Clinicians were asked to rate their current practice anonymously online in SurveyMonkey using a five-point Likert scale with potential responses of ‘all of the time’, ‘most of the time’, ‘some of the time’, ‘never’ and ‘unknown’. Total number of clinicians who responded: Private facility, N = 40; Public facility, N = 32. MO, medical officer; SW, social worker

The comparison of carer and clinician perceptions of staff performance using results from the private service preintervention survey highlighted several areas that differed significantly (P < 0.05) (see Table 3). Table 3 details the key findings for each partnership standard where significant differences were found. Overall, significant differences were found for the ratings of ‘never’: carers stated that they never had particular experiences, whereas clinicians perceived their own practice in relation to the questions to be far more favourable.

Table 3.  Key findings from comparison of clinician and carer perspectives from preintervention surveys in a private mental health facility in South Australia in relation to carer partnership standards

Results from the surveys suggest that carers have similar and a broad range of experiences with both mental health service types, but that considerable gaps exist between carer experiences and clinician self-ratings of their own practice. Overall, the survey results point to the lack of a consistent approach by both services and suggest potential barriers to fostering carer participation and engagement.

Invisibility of the carer in the recovery process, manifested through lack of acknowledgement, understanding and inclusion, is pronounced in the results and comments in the carer surveys. This is evident in all partnership standards. Invisibility of the carer has been reported in other studies,^3,9,16,23 and, in this study, the findings suggest that both services still have a traditional focus on care of the consumer as an individual, separate from their social system of roles and interdependent relationships. If not included in the partnership, the carer is more likely to be excluded from sharing information to support assessment, care planning and treatment, as well as receiving information needed to support the person at home, findings that are also consistent with those of other studies.^8,17 Studies have reported that such exclusion can result in carers experiencing feelings of powerlessness, anger, frustration and exhaustion,^8,13,24 which is consistent with some of the comments made in the surveys.

Lack of recognition of carers’ own needs is particularly pronounced in the findings in Partnership Standards 5 and 6, which relate specifically to addressing carer rights and need for support. The onus on the carer to seek out information about care and treatment is also pronounced, particularly in the comments, a finding that is consistent with other studies.^8,13,17 This could be particularly difficult for a carer who is not assertive or is distressed and exhausted. This finding is reinforced by the clinician surveys, which suggest an inconsistent understanding and application of carer policies by clinical staff. Without formal documented processes, or protocols, for engaging with carers, welcoming carers at first contact and providing information about the service, supports, carer rights and responsibilities, a casual approach is likely to continue.

The primacy of consumer consent and autonomy that emerged from the clinician surveys represents both a barrier to fostering carer participation and a particular tension for clinical staff. Although consumer autonomy is an important concept in promoting empowerment in recovery, such an individualistic emphasis means that clinicians may frame their own responsibilities and tasks solely towards the consumer’s immediate clinical care needs, and to the exclusion of others.^16,17 This individualistic focus is reinforced by the legal framework and ethical practice principles by which clinicians are bound, with confidentiality a core value in developing and maintaining a therapeutic relationship with the consumer. Issues of confidentiality stem from legal precedents that protect the rights of the individual as a distinct legal entity.^3,25 However, the privileging of the rights of the individual can create tensions for clinicians, particularly where the needs of the consumer and carer may be perceived as competing, with those of family carers positioned as secondary to those of the consumer, who is considered the primary focus of treatment.^3,9,16

Although not explicit in the carer surveys, the use of consumer consent and privacy by clinicians is seen by carers to be the key barrier to carer involvement in the assessment and care planning for when the person returns home.^7,8,17 Confidentiality has been described as an emotive subject for family carers, particularly because it is experienced as diminishing the importance of family carers in the life of the consumer, marginalising them within the mental health service, rendering them powerless and creating difficulties in managing their caring role.^3,17,26 Although the surveys suggest that clinical staff are confident with obtaining consumer consent all of the time, there is a suggestion of more limited understanding of the nuances and limits of confidentiality, as well as of the rights of the carer to their own confidentiality. This finding is consistent with other studies that have reported that reciprocal rights do not always extend to carers in practice.^3,8 In effect, these different standards of confidentiality for clinical staff reflect both the invisibility of carers in treatment planning for recovery and the relegation of the carer role as secondary to that of the consumer within the service.³ Understandably, not respecting carer confidentiality and not keeping confidential information provided by carers separate from consumer clinical records risks compromising relationships that are often already under stress, and may place carers at increased risk. An understanding of the nuances and limits of confidentiality may be improved by regular training, clinical discussions and supervision.^3,15

A key theme arising from the comments in the clinician surveys was the lack of understanding by some clinicians that carer engagement is the responsibility of all staff, regardless of discipline. Other studies have found that, in the absence of protocols, staff may assume that others will make contact, with the potential consequence that no one makes contact with the person’s family carer.⁴ Conversely, having a dedicated staff member or members as the principal carer contact has been found to significantly increase carer engagement and involvement in care planning as long as new staff are introduced to the procedures.⁴

Nurses have been described as the largest professional mental health care group and have a crucial role in fostering carer participation.²⁷ However, the non-item response in the public service clinical surveys (~50% of nurses ‘skipped’ each question in the preintervention survey), together with the comments (Table 2), suggest that some nurses may not consider that they have a vital role with carers. This is despite nursing as a profession acknowledging itself as the profession best positioned to engage with both carers and consumers.²⁷ However, because basic nursing training may not prepare nurses for working with carers, studies have found that contact by nurses with carers can be informal, ad hoc and unstructured.²⁸ Because carers know the consumer on a day-to-day basis, there is great potential for nurses to learn from carers about how best to provide support when the person is acutely unwell. Other studies have highlighted the importance to, and relief felt by, carers when consulted and included by nurses.²⁷ Given the key role of nurses with carers, several studies have focused on educational programs designed to measure change in nursing clinical practice.^28,29 Key findings suggest that changes in attitudes and practice take time and require consistent, ongoing organisational support and leadership to demonstrate a valuing of staff in learning skills in partnering with carers.²⁹ Both services involved in the present study have expressed a commitment to improvement based on the results of the surveys, and the research team has provided the services with several recommendations under each partnership standard, as detailed in Table 4.

Table 4.  Recommendations to improve clinical practice against each mental health carer partnership standard
FOI, freedom of information

Both projects were subject to limitations, particularly with the low preintervention survey response rate for carers with the public service and for the postintervention surveys of clinicians and carers with both services. Despite the limitations, the differences in the perception of carers and staff concerning carer engagement, the lack of discernible change following brief staff exposure to the education in the Guide, the survey comments and the consistency of findings with those of other studies suggest that significantly more improvement is needed to meet the partnership standards. Brief exposure to education through the Guide alone may not be sufficient to effect change in the overall attitudes, skills and knowledge of clinical staff about carers. Key recommendations focus on: (1) developing and implementing procedures and protocols, with responsibilities assigned for updating and orienting new staff to these; (2) orienting all staff to the key carer policies and legislation; (3) facilitating ongoing team discussions regarding areas of tension, such as consent and confidentiality; (4) having dedicated staff members as principle carer contacts; and (5) requiring staff to complete the e-learning modules with the Guide as part of mandated clinical training modules. It is recommended that future research should use different and more rigorous methods. These could include ethnographic methods to better understand how the standards are operationalised in day-to-day practice by individuals and teams, longitudinal research given that some consumers and carers may only have intermittent contact with the services and/or methods aimed at matching pre- and postintervention surveys to enable more direct comparison of potential changes in perspectives over time. The present study arose from a participatory approach in which mental health consumer and carer members of the PMHCCN devised the Guide and then a small number of senior clinical management staff were involved in formulating the plan for recruitment and roll-out of the project steps to match the research settings. However, future research could include a participatory approach inclusive of all stakeholders in collaboration across all research stages to facilitate engagement and partnership between clinicians and carers.

The authors declare that they have no competing interests.