2. Engaging

Standard 3: CONSUMER AND CARER PARTICIPATION
Consumers and carers are involved in the planning, implementation and evaluation of the MHS (Australian Health Ministers Advisory Council (AMHAC) - National Mental Health Working Group, Information Strategy Committee, National Standards for Mental Health Services, December 1996).

Standard 2: CONSUMER AND CARER PARTICIPATION
Mental health professionals encourage and support the participation of consumers and carers in determining (or influencing) their individual treatment and care. They also actively promote, encourage and support the participation of consumers, family members and/or carers in the planning, implementation and evaluation of mental health service delivery (Australian Health Ministers Advisory Council (AMHAC) - National Mental Health Working Group, Information Strategy Committee, National Practice Standards for the Mental Health Workforce, September 2002).

According to Hatch (1985) culture “consists of conventional patterns of thought and behaviour, including values, beliefs, rules of conduct, political organisation, economic activity, and the like, which are passed on from one generation to the next” (Jones A and May J. Working in Human Service Organisations A critical introduction, 1992, Longman, Australia (page 229)). Allaire and Firsirotu in 1984 asserted that “what ever else they may be, organisations are...social creations and creators of social meanings” (Jones A and May J. Working in Human Service Organisations A critical introduction, 1992, Longman, Australia (page 228)

How an organisation or agency understands, internalises and communicates its expectations and values will greatly influence how clinicians practice. It is no surprise then that clinicians who work in organisations that support consumer participation and consumer outcomes are more likely to be engaging in the process.

Consumers and carers are directly involved in consumer outcomes through a process facilitated by a clinician. It is the clinician’s responsibility to offer, explain and discuss completed self-assessment measures.

Medical leadership and engagement in consumer outcomes is vital to the successful implementation and utilisation of consumer outcomes in routine clinical practice.

National Practice Standards for the Mental Health Workforce Clinicians strive to deliver safe, quality services by engaging with consumers and carers.

Clinicians play a key role in mental health service delivery and are therefore integral to consumer outcomes. Clinicians seek to actively involve consumers and carers, where appropriate, in care planning processes.

Clinicians require training in the completion of the measures as well as opportunities to explore how consumer outcomes can inform clinical decision-making. Consumer outcomes provide a tool for multidisciplinary input, review and decision-making. The consumer outcomes also provide evidence for clinicians to identify professional development needs and to manage case loads.

Offering the consumer self-assessment measure is important as it:

• sets the value and expectation that the consumer’s perspective is important
• augments information from other key informants
• provides a baseline for future comparison.

The process of engagement, establishing rapport and developing therapeutic alliance is perhaps one of the most challenging aspects of mental health service delivery. Clinicians rely on their experience and expertise in engaging consumers irrespective of a consumers legal status. Mental health services have measures of clinical recovery implemented in routine practice and the challenge for clinicians is using these measures in a personal recovery orientated frame.

The consumer outcomes provide both opportunities at a single point in time as well as providing the capacity to look at change over time. The conversation between a consumer and clinician needs to focus on both areas of difficulty as well as strengths. Strength based conversation is still compatible with measures that rate according to difficulty or distress. If a consumer has rated an item as zero clinicians can spend time exploring what the consumer attributes the rating to:

• What are their strengths, supports and skills in this area?
• Are some of these transferable to other areas of their life?

While it is important to cover areas of difficulty, identifying areas of improvement or strength is crucial in building a consumer’s capacity to identify and manage their illness.

Engaging clinicians in the consumer outcomes agenda occurs through supporting them to:

• participate in training in the rating and also clinical utility
• showcase the use of consumer outcomes in clinical practice in forums across states and territories
• access information, resources, training materials, and attend forums.

With assistance from the Commonwealth Department of Health and Ageing, Quality Through Outcomes funding in 2005 -2008, jurisdictions have engaged clinicians, consumers and carers in a range of activities to further enhance the clinical utility of consumer outcomes.

Suggested websites:
www.mhnocc.org
www.health.vic.gov.au/mentalhealth/outcomes
www.health.gov.au/internet/main/publishing.nsf/Content/mental-pubs-n-workstds
www.aasw.asn.au
www.ausot.com.au
www.amicus-mhna.org
www.psychology.org.au

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2.2 Consumer

Consumer participation in public mental health services is fundamental to ensuring an effective and responsive system. Mental health services endeavour to actively promote and facilitate involvement by consumers in their treatment and care. Completion rates are influenced by how effectively self-assessments are offered.

The nationally available, aptly named ‘Whose outcome is it anyway? Consumer Self-Assessment in Mental Health’ resource/brochure/DVD was developed by consumers and carers for consumers and carers about the national consumer outcomes initiative and highlights the importance of consumer and carer voices.

Consumer outcomes provide a framework for consumer participation and the self-assessment process must include offering and completing the measure as well as dialogue regarding both the consumer and clinician perspectives as rated by the respective measures. Offering a self-assessment measure can facilitate engagement as well as collaboration between consumers, carers and clinicians. Also, discussion of self-assessment ratings with consumers (and where appropriate with carers) can enrich treatment and care planning. Self-assessment provides the opportunity for consumers, carers and clinicians to track progress through comparisons of ratings over time. Change over time is more difficult to monitor accurately without measurement tools.

Consumers and carers should also be provided with general information on consumers’ and carers’ roles, rights and responsibilities; documentation requirements including privacy and confidentiality; complaints process and consumer and carer structures/programs such as consumer advisory groups. Adequate provision of this information may go some way in allaying consumers’ concerns or uncertainty about consumer outcomes.

Consumers and their carers/families should be provided with verbal and written information on consumer outcomes to enable them to make an informed decision about participation. It is important that information includes how the measure will be used, what the consumer can expect and provides reassurance that their responses will be treated respectfully and discussed with their clinician.

Wherever possible, the provision of information should be in the consumer’s preferred language.

What is the carers’ role?

As part of engaging the consumer in consumer outcomes, it is helpful to:

• explore the carer’s overall role in treatment and care
• consider what role they may have in consumer outcomes.

Clearly understanding and articulating expectations on respective roles is important. Consumer outcomes provide an opportunity for identifying different perspectives, highlighting areas of agreement or disagreement, and a way of mapping a consumer’s journey.

Carer or family member involvement in consumer outcomes can take many forms, including:

• Completion of a parent version of the Strengths and Difficulties Questionnaire (SDQ) in child and adolescent mental health services.
• Involvement in a discussion with the consumer and clinician about the measures.
• Encouragement for consumers to (a) complete the self-assessment measure, (b) to return the completed form and (c) ask for feedback on measures.
• Assistance for consumers in completing where appropriate and the consumer feels comfortable. There are instances when a carer may provide assistance to the consumer in completing their self-assessment. It is crucial that the answers provided are the consumers’ perspective and not completed by the carer on the consumers behalf.
• While there is no agreed carer measure for adult or older person services, if a consumer completes a self-assessment the carer could be involved in the dialogue with the clinician and consumer and contribute their perspective (to confirm or challenge), assuming that the consumer has given permission for the carer to be a) involved or b) to see their answers to the self assessment. The carer could also provide their perspective to enhance the care provided.
• Clinicians need to acknowledge and be sensitive to the potential tensions this may create in the consumer and carer relationship.
• Involvement in care planning incorporating consumer outcomes.
• Clarification with carer/family in understanding the established goals.
• For information on the nationally mandated outcomes measures visit the sites detailed in the materials section of this resource.

Refer to: 6.2 Resource materials

2.2.1 Offering

Mental health clinicians spend considerable time and energy in preparation and the introduction of a particular type of treatment or therapy with a consumer. It is well acknowledged that there are ‘windows of opportunity’ in which engagement can occur with optimal engagement. Consumer outcomes need to be conceptualised in the same way.

The way in which clinicians offer the self-assessment is the best predictor of whether a consumer will complete the self-assessment measure. Like clinical practice in general, the successful offering of the consumer self-assessment requires skill, thought, preparation and effort on the part of the clinician.

It is the clinicians responsibility to ensure the self-assessment measure is offered and completed. There are a number of ways that the consumer self-assessment can be offered and completed including waiting times, face-to-face, groups, by mail or through emerging technologies. For further details on these options see examples box at the end of this section.

Refer to: 2.2.1 Examples

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Increasingly services are using a range of processes and roles to enhance and support the offering and completion of the consumer self-assessment measure. If the clinician relinquishes the offering of the self-assessment measure there are missed opportunities for engagement and therapeutic alliance.

Common issues

Offering the self-assessment will be enhanced by consideration and attention to the following key areas of concern, including:

• Providing reassurance regarding privacy and confidentiality
• Consumer self-assessment collection requirements
• Temporary contraindications
• General exclusion criteria
• Special considerations
• Culture
• Literacy
• Language
• Co-existing disabilities/disorders

For a comprehensive list of items to enhance the offering of the consumer self-assessment go to the AMHOCN checklist in the examples at the end of this section.

Privacy and confidentiality

It is important to recognise that all health consumers have a legislative right to privacy as it relates to their health information and their concerns need to be pro-actively addressed. It is critical that mental health staff inform consumers (and carers where appropriate) about the privacy standards and safeguards. In addition to the legal aspects it is helpful for consumers (and carers where appropriate) to understand the rationale for why information is collected and how this information can assist in the provision of care.

It is important for mental health staff to be aware of the following:

• Outcome measurement is governed by the same legislation and considerations as other clinical activities and the consumer has a right to privacy, confidentiality and access to their records.
• Once these measures are entered in a consumer’s case notes and/or the local database, self -assessment information becomes part of the consumer’s clinical record. This means that, together with other case notes, the self-assessment information can also be viewed by the treating clinicians in other clinical contexts, such as case review or the development of an Individual Service Plan (ISP) or care plan. These are all routine clinical processes designed to benefit the consumer.
• As with all other consumer data, self-assessment records are treated as strictly confidential.
• They can be seen, handled and examined only by authorised staff and are covered by all the protections afforded by the relevant state or territory Mental Health Act and Health Records and Information Privacy Acts. It is important to note that some consumers might be reluctant to identify areas of difficulty on the consumer self-assessment if these could be presented to a mental health review board or tribunal.
• Where aggregated outcome measurement data are used for broader purposes of analysis and quality improvement, they must be de-identified regardless of whether they are derived from data gathered by the clinician or consumer self-assessment.

Consumer self-assessment collection requirements

The collection requirements are articulated in the National Outcomes and Casemix Collection protocol:

National Outcomes and Casemix Collection: Technical Specification of State and Territory reporting requirements for the outcomes and casemix components of ‘Agreed Data’ under National Mental Health Information Development Funding Agreements Department of Health and Ageing, Canberra, 2002.

It is mandatory for clinicians to offer the consumer self-assessment at certain points, but completion of the measure is always voluntary for consumers. While the national protocol does not require offering in acute inpatient settings however some jurisdictions recognise the value of offering in this setting.

It is important to consider revisiting the consumer’s decision not to participate. Further development of engagement with the clinician, increasing wellness and familiarity with the service, may lead to a shift in the consumers’ willingness and interest in completing the measure.

Even partially completed self-assessment measures are useful and the process of offering provides a good opportunity for engagement.

While it is mandatory for clinicians to offer the self-assessment at certain points there are temporary contradictions and general exclusion criteria detailed below:

Temporary contraindications

• If the consumer’s current clinical state is severe enough to make it unlikely that their responses to a self-assessment questionnaire could be obtained or, if their responses were obtained, it would be unlikely that they were a reasonable indication of the person’s feeling and thoughts about their current emotional and behavioural problems and wellbeing.
• Where an invitation to complete the self-assessment is likely to be experienced as distressing or requires a level of concentration and effort the person feels unable to give.

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General exclusion criteria

Exclusion criteria are further defined at a jurisdiction and service level related to electronic data systems. Dependent on the state or territory there are a range of recording/coding options and requirements. General exclusions include:

• If the consumer’s cognitive functioning is insufficient to enable the understanding of the task as a result of an organic mental disorder or an intellectual disability.
• If cultural or language issues make the self-assessment measure inappropriate.

Special considerations

Clinicians are encouraged to refer to relevant national, state and local policies regarding the use of translators or interpreters, and cultural considerations in working with consumers from culturally and linguistically diverse communities or indigenous consumers. Using consumer outcomes with indigenous consumers has been explored and addressed in various ways including the development of guidelines for completing the clinician rated measures with specific consumer groups.

Cultural considerations are not just unique to CALD and indigenous consumers and the following should be considered:

• A consumer’s cultural community and their right to confidentiality of personal information, given that some cultural communities are small and intimate.
• Cultural implications for participation in consumer self-assessment such as (a) cultural taboos or sensitivities in answering a certain way, (b) cultural expectations regarding who can be approached in the family for liaison with the health service, and (c) a fear of the consequences of answering honestly. The completion a self-assessment measure can also be influenced by literacy, language and co-existing disabilities/disorders. It is important for clinicians to consider the following:
• Literacy - It is widely accepted that a consumer’s developmental course is affected by the onset and impact of major mental illness. Therefore, it is reasonable to assume that literacy should be considered as a potential barrier to the completion of the consumer self-assessment measure. If literacy is identified as an issue, it is helpful to identify:

A person with whom the consumer feels comfortable to assist with reading and completing the measure. This may be a family member or friend, a support worker or mental health staff. This may include consumer or carer consultants, key worker/case manager or peer support worker.

It is important that the consumer feels comfortable to answer the questions without fear of consequences or repercussion. It is important to revisit this issue as the appropriate support person may change over time.

A suitable environment to complete the self-assessment measure. People may feel embarrassed if they have difficulty reading and writing and it is important that the consumer is afforded privacy and sensitivity.

Language - Wherever possible, measures should be provided in the consumer’s primary language while recognising that some consumers may not be able to read in their primary language. In addition the use of translators should be considered. Best practice supports the use of independent translators though informal assistance can often be provided by family members, friends or community volunteers. A number of the consumer self-assessment measures have been translated for more information:

Refer to: 6.2 Resource materials

Co-existing disabilities/disorders - It is also important to consider any difficulties associated with sight, hearing, intellectual capacity, physical disability (particularly from drug-induced movement disorders), or active substance use which may affect a consumers capacity to participate in the self-assessment process.

Enhancing the offering of consumer self-assessment

As part of the clinical utility materials produced by AMHOCN in 2005, a fidelity checklist ( [1] AMHOCN, Clinical Utility Training Fidelity Checklist, Enhancing the offering of consumer self-assessment, Materials, 2006)identifies key components for best practice in offering consumer self-assessment, including [the clinician]:

• Presents consumer self assessment as a positive experience and a genuine attempt to engage the consumer in treatment planning.
• Assesses for potential difficulties the consumer may have in completing the self assessment.
• Presents rationale for completion of the consumer self assessment measure including:
• genuine attempt to understand consumer perspective
• genuine attempt to involve consumer in assessment and care planning
• tool for clinician to monitor progress
• tool for consumer to monitor progress
• information can be used for service development and quality improvement processes.
• Reinforces consumer ownership and personal responsibility for completion of self assessment, promoting personal responsibility for illness self-management.
• Explains the self assessment is part of the medical record and subject to the same protections of privacy and confidentiality.
• Supports and encourages the consumer’s completion of the self assessment in an appropriate manner.
• Provides appropriate assistance and prompting during completion of the measure [while being mindful of the guidelines for prompting].
• Provides positive reinforcement for completion of the measure.
• Offers appropriate assistance if consumer becomes distressed or cannot complete the measure.

[In this instance assistance provided should be for the distress not assistance to continuing to complete the measure].

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Making the self-assessment measure more engaging

With consideration and recognition of local protocols and medical record standards, the more engaging and appealing the actual self-assessment form is, the more likely consumers are to complete it. Consider the following:

• Printing the forms either in colour, or on coloured paper.
• Putting a detachable cover on the form – “How are you feeling? How are you coping?
• Have your say… Will my information be kept private? Yes! All the information received about you is kept strictly private and confidential” (Queensland Health, Mental Health Inventory cover).
• Attaching an information sheet about (a) measure or (b) process – What will happen to it after it is completed? The provision of written information to consumers about self-assessment ought not to be regarded as adequate in terms of the offering and following of these measures.
• Attaching a reply paid self-addressed envelope to enable consumers to send in the completed form, though this method of taking away and returning by mail is not optimal.
• Providing the consumer with a copy of the self-assessment measure.

Examples of completion methods

There are a variety of methods or ways of completing hard copy consumer self-assessment measures. It is important to provide consumers (and carers in child and adolescent services) a private place to go, and adequate time to complete the self-assessment measure. This list is by no means exhaustive but includes a number of methods for completion, including:

• waiting times
• face-to-face
• groups
• mail out
• emerging technology

Waiting times

Time spent waiting for clinic appointments is often reported as problematic by consumers and carers. However, it may be suggested that where consumers are waiting for an ambulatory clinical appointment the consumer self-assessment could be completed.

If waiting times are going to be used as an opportunity to complete the self-assessment measure, it is critical that there is sufficient information provided to consumers beforehand.

Furthermore, it is important to be mindful of privacy in this situation and the potential for distress.

Ideally, this option would be used for existing consumers of the service or those who had completed a self-assessment on a prior occasion. If waiting times are utilised for completion, it is imperative that there is a process to ensure that:

• there are opportunities for the consumer to seek clarification or support if required
• the consumer is thanked for taking the time to complete the measure
• the original self-assessment is provided to the consumers key worker/case manager
• that the key worker/case manager follows up with the consumer
• completed forms are entered into the electronic database.

Face-to-face

Clinicians are busy with finite resources and increasing demands on their time. Offering the consumer self-assessment requires an explanation, may involve some encouragement and for some, will also require assistance in completion. So for some consumers, arranging a dedicated time period either at a clinic appointment or a home visit to complete the measure is a good option. Co-ordinating this appointment with the review requirements of the National Outcomes Casemix Collection (NOCC) protocol will ensure that the consumer measure is ready to enter into the database.

One way to use limited time efficiently might be for the clinician and the consumer to complete their respective measures at the same time, but independently. This is likely to promote discussion between the consumer and clinician about all of the measures, which would ultimately be mutually beneficial.

Once the measures are completed and entered into the electronic database you will be able to generate a report/graph. A copy of this could be provided to the consumer at the end of the session for future discussion or provided at the subsequent appointment.

Groups

Groups are utilised in some mental health services for therapy and education, though group programs vary between child and adolescent, adult and older person programs. The offering of a consumer self-assessment is a clinical activity and as such, if this method was used the group would need to be facilitated by appropriately trained mental health clinicians. If the self-assessment measure was introduced in a group setting, there needs to be appropriate attention to facilitating dialogue and ensuring the ratings are followed up by the consumers case manager/key worker.

Offering and completion in a group setting can be problematic from both a privacy perspective and the risk of group coercion for participants to complete a measure when they do not wish to do so. There are some potential limitations of completing the self-assessment measure in a group setting, including:

• It may undermine the clinician and consumer relationship by limiting the opportunity for dialogue and a collaborative process in consumer outcomes.
• Potential to highlight literacy difficulties and therefore cause disengagement.
• Potential to cause distress for the consumer which may be difficult to manage immediately in a group setting.
• Difficulties in aligning with local collection protocol/requirements.
• Limited to registered consumers and in a setting that collects the consumer self-assessment.

If groups are utilised it is imperative that:

• the voluntary nature of completion is respected
• the consumer is thanked for taking the time to complete the measure
• the original self-assessment is provided to the consumer’s key worker/case manager
• a copy is provided to the consumer to discuss further with their case manager/key worker
• that the key worker/case manager follows up with the consumer
• reassurance and support are provided if consumer has difficulty completing measure or becomes distressed
• completed forms are entered into the electronic database.

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Suggestion:

Thinking about groups conducted in your service, are there opportunities to run a session on consumer outcomes?
Exploring and completing consumer self-assessment in a group setting enables:

• discussion of consumer participation and its value
• discussion on the consumer outcomes, including the clinician and consumer measures
• exploration of the consumer self-assessment measure, tricky questions, possibilities of how information could be used
• space at the end for participants to individually complete their self-assessment measure.
• Group settings provide support for consumers who need assistance in completing, and an opportunity for normalising issues or distress some of the questions could cause.

Mail out

It is common in mental health services for consumers and carers, where appropriate, to receive information and requests from services via the mail.
There are significant limitations to this method including:

• it does not provide an opportunity for consumers to seek clarification
• it does not generally convey value or merit for the consumer to take the time to complete
• lack of follow up procedures to ensure that consumer’s completed forms are returned, acknowledged, followed up and entered onto the database.

If this method is used it is imperative that:

• A warm and inviting letter is included that clearly articulates the value and importance of completing and what they can expect to happen once it is completed – that their key worker/ case manager will be notified and will follow up with them the next time they see them, and that the information will be entered into the electronic database to ensure future use of the information.
• There is adequate information available to the consumer and carer. It is a good idea to include any information sheets/brochures with the form.
• Consumers and carers are encouraged to discuss any concerns with staff from the service.
• Reply paid envelope is included.
• A timeframe for completion and return to the service in order to activate the follow up process to retrieve the completed forms, to follow up with the consumer and discuss the ratings and the process for completion.

Suggestion:

A novel idea might be to add a quality coffee or tea bag and in the letter say something like ‘please take a moment to have a coffee/tea on us, and take a moment to tell us how you feel you are going’.

Child and Adolescent Mental Health Services have reported sending out the Strengths and Difficulties Questionnaire (SDQ) prior to the first session for completion. The ratings are then discussed with the clinician and parent, or clinician, young person and parent at the initial session.

Emerging technologies

Some states and territories are exploring the use of emerging technologies for direct consumer entry of the consumer self-assessment measures. Touch screens or computer entry are potentially more engaging and immediate for some consumers.

There are some potential issues (or risks) with this method, including:

• Sufficient preparation may not have occurred and the consumer is not able to make an informed decision about participating.
• May be intimidating if the self-entry is undertaken in a public place such as in a waiting area or in front of a clinician.
• If the software/hardware does not interface with the state-wide databases.
• If consumers self-enter and a report is automatically generated that clinicians may not necessarily review or discuss with the consumer.
• Therefore, if this method is used, it is imperative that:
• There are opportunities for the consumer to seek clarification or support if required.
• The consumer is thanked for taking the time to complete the measure.
• There is a mechanism for providing the ratings (self-entered by the consumer) to the consumers key worker/case manager.
• The key worker/case manager follows up with the consumer, and engages in a dialogue about the process and the ratings.
• There is a mechanism to ensure that the ratings are available on the relevant electronic database.

Areas for further consideration include:

• acceptability of this technology by consumers and carers
• availability and usefulness of the technology
• what happens to the ratings, issues such as data security
• interface with the state-wide databases
• capacity to generate reports for consumers once ratings are entered
• the role of the clinician in this process.

While some of these issues are specific to the technology, most are also issues in using hard copy forms.

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2.2.2 Dialogue

Every effort must be taken to make consumers feel safe and comfortable to complete and discuss consumer outcomes.

The clinician rated measures are a summary by the clinician of an overall assessment. While the measures are important it is the dialogue and the quality of the dialogue in conjunction with range of mental health information that enhance collaborative care planning. The completion of measures by both clinician and consumer can provide a framework for discussion. Dialogue can be about status at a particular point in time but also an opportunity to discuss change.

The consumer outcome measures are tools to enhance the dialogue by:

• creating a common language
• routinely seeking and valuing the consumers perspective
• providing transparency of the clinician’s assessment which can provide a platform for discussion that is somewhat more removed and objective than ’Well I think you have these problems’ and anecdotal evidence alone
• identifying similarities/differences in perspectives and priorities
• identifying both strengths and difficulties:
• If a consumer has rated an item as zero you can spend time exploring what the consumer attributes the rating to, to identify areas of strength
• Consumers of public mental health services experience areas of difficulty, distress and disability. Therefore, measuring against these areas is helpful to ensure that interventions and treatments can be appropriately targeted with the goal of increasing functioning and reducing distress and difficulty.
• visually mapping change over time.

Engaging in a meaningful dialogue with consumers about their outcomes, especially where there are differences of perspective between the clinician and consumer, can be very challenging for both parties. It takes skill on the part of the clinician to frame the ratings in a way that values both perspectives. It is particularly challenging working with consumers who disagree about the reason or need for treatment.

Some mental health clinicians argue that it is not always possible to discuss consumer outcomes with consumers, particularly those who do not complete a self-assessment measure. The approach implemented by our New Zealand colleagues has been to implement only the HoNOS suites, but the message is clear that these measures need to be discussed with the consumer with the catchphrase ‘Show me my HoNOS’. A consumer self-assessment measure is also being developed in New Zealand.

For examples of how to use consumer outcomes in clinical practice.

Refer to: 3 Practice

Enhancing the dialogue about consumer outcomes

AMHOCN has also developed a fidelity checklist (AMHOCN, Clinical Utility Training Fidelity Checklist, Enhancing the dialogue about consumer outcomes, 2006)which identifies key components for best practice [when clinicians] review and provide feedback on the consumer outcomes. [They] include:

• exploring reasons why items are not completed [while being respectful that consumers may choose not to disclose some things]
• seeking clarification of responses to individual items as required
• providing opportunities for consumer to discuss items in more detail
• providing summary of consumer self assessment [and clinician rated measures]
• explaining graphical report to consumer [providing clarification as required]
• discussing any change in the presentation of the consumer and its relationship to interventions or personal activities promoting recovery
• discussing consumer self-assessment [and clinician rated measures] in the context of goal setting
• linking summary to collaborative goal setting
• discussing future review of consumer self assessment
• offering the consumer a copy of the self assessment.

Examples

There are a variety of ways to engage in dialogue on consumer outcomes and, consistent with practice generally, the capacity to engage in meaningful dialogue is dependent on factors such as:

• available resources including time, access to meaningful reports etc
• consumer language, literacy, cognition, acuity, complexity etc
• skill level of the clinician
• effort and interest by both the clinician and consumer.

Dialogue between clinicians, consumers and possibly carers could focus on:

Consumer self-assessment

• As a process - Was it useful? Were there difficulties?
• Individual items from the most recent completion that were either - (a) left blank, (b) had a rating of some difficulty or issue, (c) had a rating of no difficulty or (d) rated by the consumer in a way not expected or anticipated by the clinician (e.g. where a consumer rated a zero and the clinician has rated those areas as having a difficulty on the clinician measures, or where a consumer has rated a difficulty but the clinician didn’t identify those areas as of difficulty).
• Subscales or total score for the most recent completion.
• Subscale or total score for the most recent and historical completions.
• Comparison of the most recent consumer self-assessment with clinical reference material either at (a) individual item, (b) subscale or (c) total score levels.
• Opportunities to elaborate on the areas highlighted by the consumer self-assessment to look at what is happening in the consumers’ life and the connection/link to their responses.
• Clinician rated measures
• Global summary of the suite of measures and areas of either agreement or difference between the consumer and clinician measures.
• Most recent rating of an individual measure by individual items, subscales or total score.
• Recent and historical ratings of an individual measure by individual items, subscales or total score.
• Comparison of most recent individual measure by individual items, subscale or total score with clinical reference material.
• As above, look beyond the scores to discuss the realities for the person which determine the score.

Refer to: 3.3 Review

2.3 Carer

• Carers are important and are valued for their support to consumers and mental health services.
• Active participation by carers is fundamental to ensuring an effective and responsive system.
• Engagement of families and carers has been articulated in a range of local, state and federal policies.
• Carer and consumer information is subject to privacy and confidentiality legislation.
• With the exception of child and adolescent services, there is no NOCC mandated measure for carer/family members version of the consumer measures used in adult and older person mental health services.
• Refer to: 2.2.1 for issues related to offering the self-assessment (including the parent version in Child and Adolescent) go do the consumer sections addressing the following:
• Carers not only have expectations but a role in encouraging consumer outcomes collection.
• Providing reassurance regarding privacy and confidentiality
• Consumer self-assessment collection requirements:
• Temporary contraindications
• General exclusion criteria
• Special considerations
• Culture
• Literacy
• Language
• Co-existing disabilities/disorders

What is the carers’ role?

As part of engaging the consumer in consumer outcomes, it is helpful to:

• explore the carer’s overall role in treatment and care
• consider what role they may have in consumer outcomes.

Clearly understanding and articulating expectations on respective roles is important. Consumer outcomes provide an opportunity for identifying different perspectives, highlighting areas of agreement or disagreement, and a way of mapping a consumer’s journey.

Carer or family member involvement in consumer outcomes can take many forms, including:

• Completion of a parent version of the Strengths and Difficulties Questionnaire (SDQ) in child and adolescent mental health services.
• Involvement in a discussion with the consumer and clinician about the measures.
• Encouragement for consumers to (a) complete the self-assessment measure, (b) to return the completed form and (c) ask for feedback on measures.
• Assistance for consumers in completing where appropriate and the consumer feels comfortable.

There are instances when a carer may provide assistance to the consumer in completing their self-assessment. It is crucial that the answers provided are the consumers’ perspective and not completed by the carer on the consumers behalf.

• While there is no agreed carer measure for adult or older person services, if a consumer completes a self-assessment the carer could be involved in the dialogue with the clinician and consumer and contribute their perspective (to confirm or challenge), assuming that the consumer has given permission for the carer to be a) involved or b) to see their answers to the self assessment. The carer could also provide their perspective to enhance the care provided.
• Clinicians need to acknowledge and be sensitive to the potential tensions this may create in the consumer and carer relationship.
• Involvement in care planning incorporating consumer outcomes.
• Clarification with carer/family in understanding the established goals.

There are a variety of ways to engage in dialogue on consumer outcomes and, consistent with practice generally, the capacity to engage in meaningful dialogue is dependent on factors such as:

• available resources including time, access to meaningful reports etc
• consumer and carer literacy
• skill level of the clinician effort and interest by both the clinician and consumer (young person and parent/caregiver in CAMHS).

Suggested websites:

www.health.gov.au/internet/mentalhealth/publishing.nsf/Content/doha-plan-1
www.health.vic.gov.au/mentalhealth/cpg/families.htm

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Enhancing the dialogue about consumer outcomes

For this section, consumer includes both young person and parent/caregiver in CAMHS.

AMHOCN has also developed a fidelity checklist (AMHOCN, Clinical Utility Training Materials Fidelity Checklist, Enhancing the dialogue about consumer outcomes, 2006 ) which identifies key components for best practice [when clinicians] review and provide feedback on the consumer outcomes. [They] include:

• exploring reasons why items are not completed [while being respectful that consumers may choose not to disclose some things]
• seeking clarification of responses to individual items as required
• providing opportunities for consumer to discuss items in more detail
• providing summary of consumer self assessment [and clinician rated measures]
• explaining graphical report to consumer [providing clarification as required]
• discussing any change in the presentation of the consumer and its relationship to interventions or personal activities promoting recovery
• discussing consumer self-assessment [and clinician rated measures] in the context of goal setting
• linking summary to collaborative goal setting
• discussing future review of consumer self assessment
• offering the consumer a copy of the self assessment.

Dialogue between clinicians and consumer (including parents/caregivers in CAMHS and possibly carers in Adult/Older Person):

Consumer (young person and parent/caregiver* in CAMHS) self-assessment

• As a process - Was it useful? Were there difficulties?
• Individual items from the most recent completion that were either - (a) left blank, (b) had a rating of some difficulty or issue, (c) had a rating of no difficulty or (d) rated by the consumer (young person and parent/caregiver in CAMHS) in a way not expected or anticipated by the clinician (e.g. where a consumer rated a zero and the clinician has rated those areas as having a difficulty on the clinician measures, or where a consumer (young person and parent/caregiver in CAMHS) has rated a difficulty but the clinician didn’t identify those areas as difficulties).
• Subscales or total score for the most recent completion.
• Subscale or total score for the most recent and historical completions.
• Comparison of the most recent consumer (young person and parent/caregiver in CAMHS) self-assessment with clinical reference material either at (a) individual item, (b) subscale or (c) total score levels.
• Opportunities to elaborate on the areas highlighted by the consumer (young person and parent/caregiver in CAMHS) self-assessment to look at what is happening in the consumers’ life and the connection/link to their responses.

* This could also include multiple versions of the consumer self-assessment measure at a single collection point and may include similarities/differences between parent and parent, parent and teacher, or young person and teacher.

Clinician rated measures

• Global summary of the suite of measures and areas of either agreement or difference between the consumer and clinician measures.
• Most recent rating of an individual measure by individual items, subscales or total score.
• Recent and historical ratings of an individual measure by individual items, subscales or total score.
• Comparison of most recent individual measure by individual items, subscale or total score with clinical reference material.
• As above, look beyond the scores to discuss the realities for the person which determine the score.

2.4 Manager

Managers are culture carriers and their:

• Commitment to consumer and carer participation will greatly influence the focus of service delivery.
• Commitment to consumer engagement in consumer outcomes will greatly influence the uptake of this activity by clinicians.
• Leadership is critical for the successful implementation, integration and utilisation of consumer outcomes.

Managers are well informed and engaged:

• Drawing on a range of information sources to understand, manage, monitor and inform decisions about their services.
• Requiring information and opportunities for skill development about the measures themselves, how clinicians might be able to utilise them and also, how they as managers might be able to use the information.
• In a comprehensive information development agenda and are excellent advocates and supporters of consumer outcomes.
• Recognising breadth of the consumer outcomes initiative and its implications for practice change.
• Grappling with how to incorporate consumer outcomes data at both the individual and aggregate levels.
• Managers are actively planning the delivery of mental health service:
• Striving to ensure the delivery of safe quality mental health services and utilise a range of existing structures to manage this such as clinical and corporate governance, quality committees etc.
• Consumer outcomes can help inform the process of planning, delivering and evaluating services.

Managers or team leaders in public mental health services typically have a clinical background so a review of the factors for engaging clinicians is helpful. It is important to consider what management skills and knowledge they have to determine how consumer outcomes could inform their work.

Providing supporting structures

Consumer outcomes should be incorporated into clinical and corporate governance processes and can be enhanced by operational support that the organisation provides to its clinicians. Quality managers and quality frameworks are well placed to support the completion and use of consumer outcomes in routine practice.

Access to professional development opportunities enables clinicians to remain aware, interested and current. Agencies need to acknowledge the breadth of professional development requirements for mental health clinicians including discipline-specific, treatment modality-specific, operational requirements e.g. information systems, consumer outcomes, advanced level training for trainers, managers, supervisors.

Managers who actively promote and facilitate supervision processes at both the professional and operational levels will provide opportunities for clinicians to:

• Manage workloads including understanding of intensity, complexity and interventions (e.g. consumer outcome collection history).
• Monitor case loads and complexity (e.g., by number of items of clinical significance each clinician in a team has on their list) to enhance case allocation.
• Assess consumer outcomes – note consumers who are improving (possible plans for discharge), those not improving (possible plans for referral or additional supports) as well as those who remain the same. It could also provide an opportunity to explore issues related to offering and engagement in meaningful dialogue on the consumer self-assessment measure.
• Discuss multidisciplinary perspectives on a consumer’s presentation, interventions and outcomes.
• To explore the impact of their values and beliefs, professional identity, morale and identification of long term professional development as they relate to the consumer outcome agenda.

In addition to formalised supervision, peer support and mentoring are very powerful and non-threatening approaches that can be used to enhance skills in the workplace or to model a particular value and behaviour. Having ‘champions’ or people with a particular interest or skill work alongside clinicians who would like to enhance their skills, for example, using computers, consumer outcomes databases, reporting, observation of clinician and consumer in self-assessment process either in offering or engaging in dialogue etc. Mentoring Works states that “Although the evidence is limited, mentoring is more effective as an ’all round’ approach than off site training” with positive outcomes such as “higher retention rates, improved productivity, improved cohesion and loyalty, increased skill leading to better client outcomes” (www.mentoringworks.com.au).

Services can provide tangible assistance by acknowledging and valuing the roles of ‘champions’, trainers and mentors. Services can do this by:

• providing clear expectations of the roles and responsibilities for these roles
• ensuring there is adequate infrastructure to support the roles such as regular meetings, mentoring and training opportunities
• acknowledging the time requirement for these roles and ensuring that this time commitment is considered as part of their workload.

Examples for how managers might be involved

Managers have a significant role to play in strengthening:

• Infrastructure and supporting information development and utilisation.
• Processes which are clear and consistent. For example, documentation requirements, entry and exit criteria from programs/teams etc.
• Consumer and carer participation that is actively encouraged and valued including the provision of structural support and resources.
• Monitoring role such as:
• compliance of their team, service or jurisdiction of reporting requirements – minimum data set including consumer outcomes
• effectiveness of their team, service or jurisdiction. How do we do this now? Consumer outcomes are being included in the development of stage two performance indicators in the effectiveness domain of the National Health Performance Framework - Health System Performance.
• Showcasing areas of innovative practice.
• Articulation and communication of expectations for consumer outcomes including training, support for clinicians, compliance, and engagement of consumers in self-assessment and in using the consumer outcomes ratings.
• Opportunities for training including orientation, rater/rating and use of consumer outcomes.
• Integration of consumer outcomes in routine clinical practice:
• collection should occur following a comprehensive assessment
• utilisation at a consumer level should occur in clinical reviews, developing care plan, clinical supervision and in routine discussions with consumers and carers
• utilisation at an aggregated level should occur in existing service quality processes such as accreditation, program evaluation and quality improvement activities and committees.
• Identifying, utilising and developing outcome measurement champions.
• Use of aggregated consumer outcomes to identify areas for professional development.
• Knowledge base of team skills and strengths and encouraging mentoring.

Refer to: 4.4 Service quality

Example of consumer outcomes used for case load

2005 - AMHOCN Newsletter Issue 9

ADON - Community Manager, Caulfield Aged Psychiatry Service gave a presentation entitled “Can HoNOS be Used as a Case Load Management Tool?”

She outlined how the HoNOS is being used within her service to develop clinician understanding of the core business, including the need to define key intake and discharge criteria and an understanding of the burden of caseloads. So, for example, a HoNOS score of greater than 12 indicates the need for referral to the “Acute Care” team. While HoNOS scores of 10 - 12 are given a high contact weighting (time consuming and significant workload).

A HoNOS score of 6 - 10 indicates the necessity for medium contact, between weekly – fortnightly visits, but with agency liaison and support. While HoNOS scores of 4 - 6 indicate low contact and relatively stable. For those consumers with HoNOS scores below 4, clinicians are encouraged to consider discharge or shared care. Sandra concludes: “Whilst there is still a way to go, I believe there is reason to determine the value of existing tools to drive effective case management, clinical interventions and clinical priority.”

www.mhnocc.org/amhocn/HoNOS_%20as_a_%20caseload_management_tool.pdf

2007 - Australasian Mental Health Outcomes Conference – NZ

Paper presentation by Sandra Keppich-Arnold, Associate Director of Nursing and Operations, Alfred Psychiatry, AUSTRALIA

Paper 5: Using outcome measurement as an adjunct to caseload management improves clinical interventions and reduces case load demands

www.tepou.co.nz/page/323-Speakers-039-Presentations-Day-One

2008 - QUATRO VIC Bulletin 3 (March 2008) - Melbourne

“Sandra Keppich-Arnold presented an informative case study where discussion of a very low HoNOS 65+ score in a clinical review meeting raised questions that led to an extensive review of the consumer’s care. Problems of isolation and social withdrawal revealed underlying mental health difficulties, more effective treatment was provided, and the woman was able to re-establish her former active and social life.”

www.health.vic.gov.au/mentalhealth/outcomes/quatro-bulletins/march08.pdf

2.5 Partnerships

Mental health clinicians actively engage with a range of service providers and support agencies to support consumers in managing their illness and achieving their goals. Where consumers have consented to sharing their consumer outcomes information across services, it is worthwhile considering:

• If there is a process for sharing consumer outcomes with external agencies? If so:
• How is this information provided? – Verbally, total scores, total and subscale, as part of other information, stand alone reports.
• Does the external organisation collect consumer outcomes? If so:
• What are they?
• Are they shared with the consumer?
• Are they available for sharing with the mental health service?
• Does the external organisation utilise aggregate level outcomes data? If so:
• How do they use it?
• Where is it obtained?
• Are consumers of their service aware of this?

Non-Government Organisations (NGO)

Peak bodies

There are a number of local, state and federal peak bodies for mental health who play a powerful role in lobbying for quality mental health care. While use of individual consumer outcomes is unlikely in these organisations, there is potential for consideration and utilisation of aggregate level consumer outcomes.

Examples of national peak bodies:

• SANE - www.sane.org
• Mental Health Council of Australia - www.mhca.org.au/AboutUs/ListMemberOrgs.html
• Mental Health Carers ARAFMI Australia - www.arafmiaustralia.asn.au

Examples of state level peak bodies include:

Victoria

• Victorian Mental Illness Awareness Council - www.vmiac.com.au
• Victorian Mental Health Carers Network - www.carersnetwork.org

South Australia

• Carers SA
• Health Consumers Alliance Inc of South Australia

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Support agencies

It is common for consumers of public mental health services to access non-government organisations for non-clinical support and activities. There is considerable variety in the types of non-government organisations accessed by consumers of public mental health services, from psychiatric disability or mental health-specific, to generic community and private agencies.

Consumer outcomes could be used to inform:

• referral to an external support agency by longitudinally mapping consumers areas of difficulty and improvement
• prioritising areas for activities or input by the support agency and can inform joint management plans
• consumers perspective on their progress.

It is important to consider the interface between the support agency and the clinical mental health service. Consider the following questions:

• If there is a process for sharing consumer outcomes with external agencies? If so:
• How is this information provided? – Verbally, total scores, total and subscale, as part of other information, stand alone reports.
• Does the external organisation collect consumer outcomes? If so:
• What are they?
• Are they shared with the consumer?
• Are they available for sharing with the mental health service?
• Does the external organisation utilise aggregate level outcomes data? If so:
• How do they use it?
• Where is it obtained?
• Are consumers of their service aware of this?

Government departments

Consumers of public mental health services are often engaged with a range of local, state or federal government departments, including:

• health (general/acute) and ageing
• education, employment and workplace relations
• families, housing, community services and indigenous affairs
• human services
• disability
• income support (Centrelink)
• child protection
• juvenile justice
• corrections
• police
• immigration and citizenship.

The relationships with, and information requirements for, each of these departments varies considerably. Consequently, the way in which mental health services provide information will vary in type, breadth, method and frequency. Notwithstanding these requirements and variation in the consumer presentation and needs, it is helpful to consider opportunities consumer outcomes could provide.

General practice

It is common practice for consumers accessing public mental health services to have shared care arrangements with general practice clinics and general practitioners. In addition to the two federal government initiatives outlined below, it is helpful to consider general practitioners and their:

• understanding of consumer outcomes
• potential role, for example:
• provision of collateral information in line with the collection requirements (admission, 91-day review or discharge) to inform the completion of the measures by the mental health clinician
• obtaining copies of the measures as part of their information source, particularly the consumer self-assessment measure. Could be sent a copy of the scores together with individual care plan (if not already included) where care is shared/on discharge to GP.

Examples of specific programs delivered through general practice that may have a role in utilising or collecting consumer outcomes:

• Mental Health Nurse Incentive Program www.medicareaustralia.gov.au/provider/incentives/mental-health.jsp

• Better Access to Mental Health Care Initiative www.medicareaustralia.gov.au/provider/incentives/mental-health.jsp
• Mental Health Shared Care with General Practice
  www.primarymentalhealth.com.au/site/index.cfm?display=1512

2.6 Endorsements

AMHOCN, in collaboration with Barwon Health, the lead agency of the Victorian Western Cluster Quality through Outcomes Project, has produced a range of promotional and educational materials called ‘Whose outcome is it anyway? Consumer Self Assessment in Mental Health’.

A DVD outlining the views of consumers, carers and clinicians has also been produced. This DVD is a training resource that explores the opportunities afforded by routine outcome measurement in clinical practice. Hard copies of the promotional materials including a “novelty flipper card” along with copies of the DVD and associated training materials are available on request to AMHOCN.

Consumer and carer

QUOTES (Australian Mental Health Outcomes Classification Network, ‘Whose outcome is it anyway? Consumer Self Assessment in Mental Health’ brochure, 2006):

• ‘Consumer self assessment is seen as a vehicle in the consumer’s journey. Used to discuss goal setting, to assist in evaluating the service being received and assess when to move on.’
• ‘What does being valued really look like and how does it feel?’
• ‘Map of recovery; where are we, where we want to get to.’
• ‘Triad - dialogue and relationship with consumer, carer and case manager. Working together to identify personal priorities of needs.’
• ‘By sharing and exploring the information it will set up an expectation that the consumer’s opinion is valued.’

‘Consumer perspective Helen Connor, Consumer Representative Mental Health Council of Australia, was a member of a discussion panel at the Outcomes Conference titled

’Mental Health Outcomes: lessons learnt and challenges for implementation’ (Queensland Health, Outcomes Initiative Update 8).

Helen stressed the importance of clinicians engaging with consumers and carers regarding outcome measures. “It takes more than just handing a glossy brochure, saying it is your choice and then not really explaining it. The collection of outcome measures is only good if it enables consumers and clinicians to sit down and engage together and work in partnership. It is essential that all outcome measure results be shared with the consumer, not just the consumer rated measure.

When you share all the results it is then about sitting down and having a discussion about why there may be differences in clinician and consumer rated measures. This will provide valuable information and will assist in the development of a care plan that meets the consumers identified needs”.

SA Forum 7/4/08 A day with a Consumer/Carer focus

Tania Lewis, consumer consultant, presented ‘The Ripple Effect A consumer’s view of why we should embrace Outcome Measures’. This presentation was very powerful and had a really positive impact on participants including clinicians, consumers and carers. The presentation is available on the SA website www.health.sa.gov.au/mentalhealth/Default.aspx?tabid=99.

Articles

David Guthrie, Mishka McIntosh, Tom Callaly, Tom Trauer and Tim Coombs, Barwon Health:

Community and Mental Health, Geelong, Victoria, Australia, Consumer attitudes towards the use of routine outcome measures in a public mental health service: A consumer-driven study, International Journal of Mental Health Nursing (2008) 17, 92–97.

Clinician

Quotes (Queensland Health, Outcomes Initiative Update 7)

• “I like the consumer focus” (RN)
• “They are easy to use” (Indigenous Mental Health Worker)
• “It quantifies a lot” (Social Worker)
• “Gives information to feedback to the consumer” (Child and Youth Coordinator and Psychologist)
• “Reports and graphs are really good” (RN)
• “Good start, but needs refinement” (Psychologist)
• “It’s all been said, so I can’t add too much more” (Remote Area RN)’

MHI and SDQ: Positive Feedback (Queensland Health, Outcomes Initiative Update 9)

“Positive feedback is being received about the Adult (MHI) and CYMHS (SDQ) consumer self rated outcome measures. Some feedback from clinicians has indicated that initially they were sceptical; however, they are now finding that consumers can complete the measures, they want to fill them out and they value the opportunity to provide this information. In addition, clinicians have noted the measures provide more information than they have gathered in their assessments alone and at times it has challenged their initial case formulation. This supports the experience of Victorian clinicians who have shared similar experiences and accordingly value the information gathered through consumer self rated measures.”

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