Publications
On this page, we will share our open-access publications and reports and links to other published works. Stay tuned for new additions soon.
From substitute to supported decision making: Practitioner, Community and service user perspectives of privledging will and preferences in mental health care.
Compliance with the Convention on the Rights of Persons with Disabilities (CRPD) requires substitute decision making being abolished and replaced with supported decision making. The current exploratory study involved a series of hui (meetings) with subject matter experts across the spectrum of the mental health care system to identify interventions facilitative of supported decision making; and the prioritisation of those in accordance with their own perspectives. A mixed-methods approach was used to categorise, describe and rank the data. Categories of intervention identified included proactive pre-event planning/post-event debriefing, enabling options and choices, information provision, facilitating conditions and support to make a decision, and education. The category of facilitating conditions and support to make a decision was prioritised by the majority of stakeholders; however, people from Māori, Pasifika, and LGBTQIA+ perspectives, who disproportionally experience inequities and discrimination, prioritised the categories of proactive post-event debriefing/pre-event planning and/or information provision. Similar attributes across categories of intervention detailed the importance of easily and variably accessible options and choices and how these could best be supported in terms of people, place, time, material resources, regular reviews and reflection. Implications of these findings, particularly in terms of the operationalisation of supported decision making in practice, are discussed.
Citation: Gordon, S., Gardiner, T., Gledhill, K., Tamatea, A., & Newton-Howes, G. (2022). From Substitute to Supported Decision Making: Practitioner, Community and Service-User Perspectives on Privileging Will and Preferences in Mental Health Care. International Journal of Environmental Research and Public Health, 19(10), 6002.
Use of advance directives to promote supported decision making in mental health care: Implications for international trends for reform in New Zealand.
Advance directives are advocated, in many jurisdictions, as a way to promote supported decision-making for people who use mental health services and to promote countries' compliance with their obligations under the United Nations Convention on the Rights of Persons with Disabilities. The United Nations Convention on the Rights of Persons with Disabilities promotes the use of tools to further personal autonomy which would include integrating the use of advance directives into mental health law, to clarify the effect (or force) an advance directive carries when its maker comes under the relevant mental health legislation. In addition, securing the active use of advance directives requires adoption of certain supportive practices and policies within health services. Here, we discuss a number of approaches taken to advance directives in revised mental health legislation, and the associated practices we think are required.
Citation: Lenagh-Glue, J., Dawson, J., Potiki, J., O’Brien, A. J., Thom, K., Casey, H., & Glue, P. (2022). Use of advance directives to promote supported decision-making in mental health care: Implications of international trends for reform in New Zealand. Australian & New Zealand Journal of Psychiatry, 00048674221079225.
The content of mental health advance preference statements (MAPS): An Assessment of completed advance directives in one New Zealand Health Board.
Background: Mental health advance directives support service users' autonomy and provide a voice in their care choices when they may not have capacity to give informed consent. New Zealand's Southern District Health Board has recently introduced advanced directives in mental health services.
Method: Completed advance directives (n = 53) and additional demographic data were accessed from clinical records.
Analysis: Each advance directive was read and analysed by three members of the research team. The advance directive instrument has eight possible fields which could be completed, covering such topics as who should be contacted in a crisis; people service users do, or do not, want involved in their treatment; what service users would, or would not like to have happen should they become unwell; management of personal affairs; other specific preferences; and provision of further relevant information. The number of preferences stated in each field was also calculated.
Results: The advance directives provided expressions of preferences which were personally meaningful for service users and provided practical guidance for clinicians. Service users expressed mainly positive preferences, though some expressed negative treatment preferences, and many service users expressed preferences relating to personal affairs. Friends, family members and clinicians were nominated as preferred contacts in a crisis.
Conclusions: Service users will engage with advance directives if supported to do so. This study's results should help promote the wider availability of advance directives in New Zealand and the current reform of our mental health legislation.
Citation: Lenagh-Glue, J., Thom, K., O'Brien, A., Potiki, J., Casey, H., Dawson, J., & Glue, P. (2020). The content of Mental Health Advance Preference statements (MAPS): An assessment of completed advance directives in one New Zealand health board. International Journal of Law and Psychiatry, 68, 101537.
A MAP to Mental health: The process of creating a collaborative advance preferences instrument.
Aim. To document the process of developing a local advance directive for mental health care, which we are calling a MAP (Mental-health Advance Preferences statement).
Method. Data on advance directive preferences were collected from consumers and service providers using online surveys and analysed using quantitative methods.
Results. Both groups reported strong overall support for advance directives. They particularly favoured inclusion of items concerning personal support at difficult times. Consumers strongly advocated inclusion of statements regarding treatment options. There was broad agreement that advance directives could increase consumers’ sense of autonomy and empowerment, but service providers were less inclined to believe they helped consumers engage with mental health services or improve self-management skills. There was a highly significant divergence between service providers and consumers on whether the powers under the Mental Health Act should be able to override the consumer’s instructions.
Conclusion. MAPs aimed at facilitating treatment decisions have good acceptability from consumers and mental health clinicians. The use of peer support workers as facilitators may be an important step in successful completion of an advance directive. Future research will aim to examine national implementation of MAPs.
Lenagh-Glue, J., O’Brien, A., Dawson, J., Thom, K., Potiki, J., Casey, H., & Glue, P. (2018). A MAP to mental health: the process of creating a collaborative advance preferences instrument. New Zealand Medical Journal, 131, 1486.
Service user, whānau and peer support workers' perceptions of advance directives for mental health.
Advance directives allow users of mental health services to make statements for their future care. In New Zealand, use of advance directives is supported by the Health and Disability Commissioner and was identified in the 2012 Blueprint as a key mechanism for service users to advocate for responses they find most helpful. This study used a qualitative descriptive methodology involving focus groups to explore the perceptions of service users, whānau and peer support workers concerning advance directives. Thematic analysis revealed certain belief patterns about what should or could be included in an advance directive, and about how and with whom one should be created. It revealed generally positive perceptions about how they can uphold service users' right to have preferences considered, to plan flexibly around dynamic needs, and about their value and utility. We conclude that advance directives can support services users' expressions of their preferences for care, but they need to be supported by clinicians if they are to realize this potential. Our findings can also inform service provision in New Zealand, and the planned reform of mental health legislation.
Citation: Thom, K., Lenagh‐Glue, J., O'Brien, A. J., Potiki, J., Casey, H., Dawson, J., & Glue, P. (2019). Service user, whānau and peer support workers’ perceptions of advance directives for mental health. International Journal of Mental Health Nursing, 28(6), 1296-1305.
Helps and hindrances to completion of psychiatric advance directives.
Psychiatric advance directives (PADs) allow service users to participate in their own mental health care in the event that they have a future mental health crisis and are deemed incompetent to make decisions, but few patients complete these documents. This Open Forum reports on factors that have helped or hindered completion of PADs in New Zealand. Perceived barriers to completion include resource limitations, procedural issues, access and storage problems, and mistrust between clinicians and service users regarding implementation. Having management and nursing "champions" of the process and organizing outreach meetings for all interested parties appear to aid completion. Targeted education and training promote creation and use of PADs, address negative attitudes, and assist service users in creating these documents. Information technology support is vital to having PADs uploaded and accessed in medical records.
Citation: Lenagh-Glue, J., Potiki, J., O’Brien, A., Dawson, J., Thom, K., Casey, H., & Glue, P. (2021). Helps and hindrances to completion of psychiatric advance directives. Psychiatric Services, 72(2), 216-218.