Perspectives on the essential skills of healthcare decision making in children and adolescents with intellectual disability.

BACKGROUND: Involvement in healthcare decisions is associated with better health outcomes for patients. For children and adolescents with intellectual disability, parents and healthcare professionals need to balance listening to a child's wishes with the responsibility of keeping them safe. However, there is a scarcity of literature evaluating how to effectively involve them in decision making. In this context, we review the concept of health literacy, focusing on the skills of healthcare decision making for children and adolescents with intellectual disability. METHODS: We describe the concept of health literacy and models explaining shared decision making (individuals and healthcare professionals collaborate in decision making process) and supported decision making (when a trusted person supports the individual to collaborate with the healthcare professional in the decision-making process), and a rapid review of the literature evaluating their efficacy. We discuss healthcare decision making for children and adolescents with intellectual disability in the context of relevant recommendations from the recent Disability Royal Commission into Violence, Abuse, Neglect, and Exploitation of People with Disability in Australia. RESULTS: Health literacy skills enable individuals to access, understand, appraise, remember and use health information and services. Shared decision making has been described for children with chronic conditions and supported decision making for adults with intellectual disability. Decision-making contributes to how individuals appraise and use healthcare. The rapid review found very limited evidence of outcomes where children and adolescents with intellectual disability have been supported to contribute to their healthcare decisions. Recommendations from the Disability Royal Commission highlight current needs for greater efforts to support and build the capacity of individuals with disability to be involved in the decisions that affect their life, including healthcare decision making. CONCLUSIONS: Existing rights frameworks and healthcare standards confirm the importance of providing all people with the opportunities to learn and practise health literacy skills including decision making. There is little literature examining interventions for healthcare decision making for children with intellectual disability. Childhood is a critical time for the development of skills and autonomy. Evidence for how children and adolescents with intellectual disability can learn and practice healthcare decision-making skills in preparation for adulthood is needed to reduce inequities in their autonomy.

Supported decision-making interventions in mental healthcare: A systematic review of current evidence and implementation barriers.

BACKGROUND: There is a growing momentum around the world to foster greater opportunities for the involvement of mental health service users in their care and treatment planning. In-principle support for this aim is widespread across mental healthcare professionals. Yet, progress in mental health services towards this objective has lagged in practice. OBJECTIVES: We conducted a systematic review of quantitative, qualitative and mixed-method research on interventions to improve opportunities for the involvement of mental healthcare service users in treatment planning, to understand the current research evidence and the barriers to implementation. METHODS: Seven databases were searched and 5137 articles were screened. Articles were included if they reported on an intervention for adult service users, were published between 2008 and October 2023 and were in English. Evidence in the 140 included articles was synthesised according to the JBI guidance on Mixed Methods Systematic Reviews. RESULTS: Research in this field remains exploratory in nature, with a wide range of interventions investigated to date but little experimental replication. Overarching barriers to shared and supported decision-making in mental health treatment planning were (1) Organisational (resource limitations, culture barriers, risk management priorities and structure); (2) Process (lack of knowledge, time constraints, health-related concerns, problems completing and using plans); and (3) Relationship barriers (fear and distrust for both service users and clinicians). CONCLUSIONS: On the basis of the barriers identified, recommendations are made to enable the implementation of new policies and programs, the designing of new tools and for clinicians seeking to practice shared and supported decision-making in the healthcare they offer. PATIENT OR PUBLIC CONTRIBUTION: This systematic review has been guided at all stages by a researcher with experience of mental health service use, who does not wish to be identified at this point in time. The findings may inform organisations, researchers and practitioners on implementing supported decision-making, for the greater involvement of people with mental ill health in their healthcare.

Determining capacity of people with dementia to take part in research: an electronic survey study of researcher confidence, competence and training needs.

BACKGROUND: Researchers are required to determine whether a person has capacity to consent to a research study before they are able to participate. The Mental Capacity Act and accompanying Code of Practice for England and Wales provide some guidance on this process, but researchers have identified that it can be difficult to determine capacity to consent when a person has complex cognitive or communication needs. This study aimed to understand the experiences and opinions of researchers who recruit people with dementia to research projects, to inform the future development of training resources. METHODS: A mixed method, cross-sectional, electronic survey was circulated via social media and research networks in England and Wales. The survey remained open for ten weeks and included open and closed questions exploring respondents' confidence in determining capacity in the context of recruiting people with dementia to consent, their views on training and support they have experienced and their suggestions for future training and support needs. RESULTS: 60 respondents completed the survey from across England and Wales. Although 75% of respondents had experience of determining capacity to consent with people with dementia to research, only 13% rated themselves as feeling 'very confident' in this. Qualitative content analysis of open responses led to the generation of six themes, explaining researchers' confidence, competence and future training needs in this area: (1) Researcher uncertainties, (2) Lack of time, (3) Balancing information complexity with accessibility, (4) Gatekeepers, (5) Existing enablers and (6) Envisioning future training. CONCLUSIONS: Researchers would benefit from specific training in undertaking conversations around consent with people with dementia. People with dementia may have fluctuating capacity, and despite support from caregivers, researchers have little practical guidance on methods of determining a person's ability to understand or appreciate the information they have provided during the consent process. Given the development of large complex trials within dementia research, there is an urgency to develop specific and practical guidance and training for researchers working with people with dementia and their families.

Care and choice architecture: Relatives' support for adults with intellectual disabilities in supported decision-making processes.

The UN Convention on the Rights of Persons with Disabilities (CRPD) describes supported decision making as a fundamental human right. This study explores relatives' experiences, dilemmas, as well as key factors in supported decision-making processes with adults with intellectual disabilities living in municipal housing. The study draws on qualitative, in-depth interviews with relatives. Findings suggest that we can learn about supported decision making by using choice architecture and care theories, demonstrating that: (a) care sometimes requires facilitating for making decisions, what we here understands in light of choice architecture, (b) choice architecture in the context of intellectual disability requires an intentionality of care and a focus on the person's preferences/perspective, (c) relatives are concerned, not only with support in the moment, but also the effect of the decision in the long term, and (d) relatives' care is a significant factor in meeting choice architecture in systemic conditions.

Seize the Data: An Analysis of Guardianship Annual Reports.

Courts have a legal and ethical duty to monitor adult guardianship cases to protect the rights of individuals with guardians. Aging and disability advocates have been recommending improvements to adult guardianship monitoring for decades. The aim of this study is to examine annual guardianship reporting procedures in each state. Using the National Guardianship Association's (NGA) Standards of Practice as a guide, we summarize what is missing from adult guardianship annual report forms in each state. Since 2000, the NGA Standards have been the benchmark for guiding guardianship best practices, making it a valuable tool for guardianship reporting and monitoring. Results show that most states are not collecting thorough data on adults with guardians, their guardians, or the guardian-client relationship. Additionally, many existing annual report forms may be difficult to complete due to confusing question structure and reading levels that are above the national average, especially since most adult guardians are nonprofessional guardians. Improved reporting procedures would help courts monitor guardianships more effectively, ensure that the rights of individuals with guardians are being protected, and provide meaningful data on the overall state of guardianship. Limitations and plans for future research are also discussed.

An examination of relational dynamics of power in the context of supported (assisted) decision-making with older people and those with disabilities in an acute healthcare setting.

INTRODUCTION: Supported (assisted) healthcare decision-making (ADM) focuses attention on how people with disabilities, including cognitive impairments, can be best supported to make decisions about their health and social care on an equitable basis with others. Meaningful implementation of legal frameworks for ADM challenges long-held presumptions about who has access to valued decision-making resources, influence and power within a particular socio-cultural setting. This study aims to explore the relational power dynamics around ADM with older people in acute care settings. METHODS: This study adopts a critical hermeneutic approach to qualitatively explore the lived experience of ADM from the perspectives of Health and Social Care Professionals (N = 26). This is supported by an exploration of the experiences of older people (N = 4), older people with a diagnosis of dementia (N = 4) and family carers (N = 5). RESULTS: We present three themes of data analysis that represent three spaces where the relational aspects of power in ADM are manifested. The first space, centralising decision-making power within multidisciplinary teams identified the privileging of physicians in traditional hierarchical leadership models that may lead to the implicit exclusion of family carers and some Health and Social Care Professionals in the ADM process. Privileging cognitive and communication competence identified a tendency to attribute decision-making autonomy to those with cognitive and communication competency. The final space, balancing the duty of care and individual autonomy, recognises acute care settings as typically risk-averse cultures that limit autonomy for decisions that carry risk, especially for those with cognitive impairment. CONCLUSION: Findings indicate the need to address cultural sources of power operating through social norms premised on ageist and ableist ideologies. It is necessary to challenge institutional barriers to meaningful ADM including positional power that is associated with hierarchies of influence and protectionism. Finally, meaningful ADM requires resistance to the disempowerment created by structural, economic and social circumstances which limit choices for decision-making. PATIENT OR PUBLIC CONTRIBUTION: A public and patient involvement panel of older people were consulted in the development of the grant application (HRB: APA-2016-1878). Representatives from Alzheimer's Society Ireland and Family Carers Ireland were steering committee members guiding design and strategy.

Use of advance directives to promote supported decision-making in mental health care: Implications of 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.

Project DECIDE, part II: decision-making places for people with dementia in Alzheimer's disease: supporting advance decision-making by improving person-environment fit.

BACKGROUND: The UN Convention on the Rights of Persons with Disabilities, and the reformed guardianship law in Germany, require that persons with a disability, including people with dementia in Alzheimer's disease (PwAD), are supported in making self-determined decisions. This support is achieved through communication. While content-related communication is a deficit of PwAD, relational aspects of communication are a resource. Research in supported decision-making (SDM) has investigated the effectiveness of different content-related support strategies for PwAD but has only succeeded in improving understanding, which, although one criterion of capacity to consent, is not sufficient to ensure overall capacity to consent. The aim of the 'spatial intervention study' of the DECIDE project is to examine an innovative resource-oriented SDM approach that focuses on relational aspects. We hypothesise that talking to PwAD in their familiar home setting (as opposed to a clinical setting) will reduce the complexity of the decision-making process and enhance overall capacity to consent. METHODS: People with a suspected or confirmed diagnosis of dementia in Alzheimer's disease will be recruited from two memory clinics (N = 80). We will use a randomised crossover design to investigate the intervention effect of the decision-making place on capacity to consent. Besides reasoning capacity, which is part of overall capacity to consent and will be the primary outcome, various secondary outcomes (e.g., other aspects of capacity to consent, subjective task complexity, decisional conflict) and suspected moderating or mediating variables (e.g., meaning of home, demographic characteristics) will be assessed. DISCUSSION: The results of the study will be used to develop a new SDM strategy that is based on relational resources for PwAD. If a change in location achieves the anticipated improvement in capacity to consent, future research should focus on implementing this SDM strategy in a cost-effective manner in clinical practice. TRIAL REGISTRATION: DRKS00030799 .

Empowering patients with dementia to make legally effective decisions: a randomized controlled trial on enhancing capacity to consent to treatment.

Objectives: As our society ages, the incidence of age-related diseases increases and with it the number of medical treatments that require informed consent. Capacity to consent is often categorically questioned in persons with dementia (PwD) without appropriate assessment, depriving them of their right to autonomous decision-making. Supportive structures for PwD that comply with legal requirements are lacking. The EmMa project tried to overcome this shortcoming by developing and testing possible supportive measures to enhance the informed consent process for PwD.Method: These enhanced consent procedures (ECPs) were tested in a randomized controlled trial with 40 PwD. It was hypothesized that strengths-based ECPs could improve capacity to consent to a drug treatment in PwD as measured with a semi-structured interview.Results: Against the expectations, no effect of the ECPs on capacity to consent could be found, but the ECPs improved understanding of information in PwD.Conclusion: To empower PwD in clinical settings, however, all aspects of capacity to consent should be targeted with specific aids that are implemented carefully and selectively. More research on possible aids for ECPs is urgently needed in order to enable ethically and legally robust informed consent. In particular, effective ways to improve both reasoning and appreciation are yet to be found.

How Do Psychiatrists in Japan Choose Involuntary Admission, and What Do They Think of Supported Decision Making? A Thematic Analysis of Peer to Peer Interviews.

To include people with disabilities as equal citizens, CRPD (Convention on the Rights of Persons with Disabilities) promotes direct or supported decision-making by people with disabilities. However, involuntary psychiatry admission is considered in many countries to be necessary for people with psychosocial disabilities. To overcome the tension and implement CRPD, it is essential to understand the experiences and concerns of service users, family members, and medical professionals in each country. To understand the process and the factors that make psychiatrists decide involuntary psychiatric admission in Japan, and explore their attitudes toward direct or supported decision-making by people with psychosocial disabilities. Psychiatrists who had authorized involuntary admission and who were in charge of the service users were recruited at hospitals in Japan. The interviews were individual, peer to peer, and semi-structured. The interviews were audio-recorded, transcribed verbatim, and the analysis followed reflexive thematic analysis using NVIVO 12. Six psychiatrists (five designated psychiatrists and one psychiatric resident) participated in the study at two hospitals in urban Japan. The study found that the psychiatrists assessed symptoms, behaviors, and perceptions of the service users together with supports and wishes of their families. The psychiatrists decided on involuntary admission when they saw self-harm or violence, weak insights and judgment abilities, family's wishes, or when they wanted to avoid the service users leaving the hospital with incomplete treatment. The psychiatrists felt that the service users would not understand any explanations, which made their communications minimal. The psychiatrists thought it was hard to imagine a system other than the current involuntary admission mechanism. If it was to change, they felt the essential things were to avoid abuse, clarify who is responsible, make plans medically valid and feasible, and assess and plan through everyday life, not just in crisis. During a crisis, the psychiatrists were most careful about complying with the Mental Health Act and responded to the family's wish. The psychiatrists justified involuntary admission as they believed that people in a psychiatric crisis cannot decide or understand and need protection. Related protocols, laws, and expectations from family members shapes the values and practices of psychiatrists in Japan. The paper concludes with several recommendations to regard people with psychosocial disabilities as equal citizens, and promoting the aim of reducing or ending involuntary admission.

From the chemical imbalance to the power imbalance: A psychiatry trainee's perspectives on service-user supervision.

OBJECTIVE: This paper describes perspectives and insights of a trainee's experience of service-user supervision. This includes the background to this novel approach, outlining its process and content, key themes arising, applications in practice, limitations of the approach, and future considerations. CONCLUSIONS: Service-user supervision promotes education and experiences at this important stage of professional development and can promote clinical, cultural, and systemic changes required to support the paradigm shift towards recovery-oriented and human rights-based practice.

From Guardianship to Supported Decision-Making: Still Searching for True North?

This article argues that asking whether guardianship has changed is the wrong question. It is the wrong question because guardianship does not exist in isolation from other institutions and legal instruments, such as enduring powers and nominee powers, or informal community arrangements of support or substituted decision-making. It is the wrong question because archetypical purity of guardianship as substitution and support as autonomy does not reflect real world experience of it as it is always a mixture of both, changing over time and decision type; and because change is very hard to pin down. In place of arid debates about whether guardianship should be modified or abolished, the better question to ask is where guardianship and its associated institutions fit within an ideally configured holistic package of formal and informal measures, and whether there are any indications of progress towards its realisation, or how that might be achieved.

Experiences and perceptions of everyday decision-making in the lives of adults with intellectual disabilities, their care partners and direct care support workers.

Background: Decisional support is important to people with intellectual disabilities. This review explores: i) how everyday decision-making is perceived and/or experienced by adults with intellectual disability, their care partners and direct care support workers (DCSWs); ii) techniques/approaches used to support everyday decision-making; and iii) barriers/facilitators encountered. Method: PRISMA systematic review methodology using PsycInfo, PubMED, Web of Science, CINAHL and Scopus. Results: Eighty-one papers were included [qualitative (n = 69), quantitative (n = 7), mixed methods (n = 5)]. Adults with intellectual disability reported wanting to make decisions and needing support. Care partner support was affected by concerns about safety and decisional capacity. DCSWs reported difficulty balancing client decisions and care partner concerns when providing support. Supported Decision-Making (SDM) was identified as a key method of support. Barriers and facilitators were interconnected and impacted by stressors. Conclusion: This topic is under-researched and ill-defined. Supported decision-making is an increasingly popular approach whose application requires further exploration.

Project DECIDE, part 1: increasing the amount of valid advance directives in people with Alzheimer's disease by offering advance care planning-a prospective double-arm intervention study.

BACKGROUND: Everybody has the right to decide whether to receive specific medical treatment or not and to provide their free, prior and informed consent to do so. As dementia progresses, people with Alzheimer's dementia (PwAD) can lose their capacity to provide informed consent to complex medical treatment. When the capacity to consent is lost, the autonomy of the affected person can only be guaranteed when an interpretable and valid advance directive exists. Advance directives are not yet common in Germany, and their validity is often questionable. Once the dementia diagnosis has been made, it is assumed to be too late to write an advance directive. One approach used to support the completion of advance directives is 'Respecting Choices'®-an internationally recognised, evidence-based model of Advance Care Planning (ACP), which, until now, has not been evaluated for the target group of PwAD. This study's aims include (a) to investigate the proportion of valid advance directives in a memory clinic population of persons with suspected AD, (b) to determine the predictors of valid advance directives, and (c) to examine whether the offer of ACP can increase the proportion of valid advance directives in PwAD. METHOD: We intend to recruit at least N = 250 participants from two memory clinics in 50 consecutive weeks. Of these, the first 25 weeks constitute the baseline phase (no offer of ACP), the following 25 weeks constitute the intervention phase (offer of ACP). The existence and validity of an advance directive will be assessed twice (before and after the memory clinic appointment). Moreover, potential predictors of valid advance directives are assessed. DISCUSSION: The results of this study will enhance the development of consent procedures for advance directives of PwAD based on the ACP/Respecting Choices (R) approach. Therefore, this project contributes towards increasing the autonomy and inclusion of PwAD and the widespread acceptance of valid advance directives in PwAD. Trial Registration DRKS, DRKS00026691, registered 15th of October 2021, https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00026691.

[The reform of guardianship law]. / Die Reform des Betreuungsrechts.

The reform of the guardianship law has been decided! The reform will come into force on 1 January 2023. The content of the guardianship law will not be completely restructured. The tense relationship between the protection of the person against decisions not made on his or her own responsibility and the self-determination of the person will be consistently further considered and strengthened in favor of the self-determination of the person concerned. Supportive decision making, the consideration of a person's wishes, the abandonment of the term (and concept of) "well-being" as a measure for guardianship are some examples; however, the new law also sets boundaries in adhering to a person's wishes. Namely, if they are associated with the risk of significant harm to the person or his or her property. The article first presents the main objectives of the reform. Based on this, the focal points are the deletion of the word "well-being", the regulation of the proxy power of attorney and measures for greater consideration and better implementation of the principle of the necessity, which is central to the guardianship law. Critical comments are made on the newly introduced spousal representation law and its significance for the psychiatric practice. As a result, it can be stated that there will be hardly any significant changes in healthcare and even less so in the area of coercive measures. It remains to be seen whether the legislator's welcome concern to avoid guardianship through improved information and counselling on social rights will be achieved in practice. The same certainly applies to the strengthening of supported decision making, the idea of which is also to be welcomed but is still looking for a gold standard for practice.

Supported Decision making teaching in New Zealand postgraduate psychiatry trainees.

OBJECTIVE: To examine psychiatric trainees teaching of supported decision-making (SDM). METHOD: New Zealand psychiatric trainees were surveyed about teaching regarding SDM using a novel tool. The analysis strategy examined the latent structure of the questionnaire and correlates of teaching in these areas. RESULTS: Forty nine trainees participated. Questions related to support from others and consistency of engagement were most highly endorsed while the concept of experiential learning was most poorly endorsed. Three latent factors were identified: 'enabling personhood', 'decision autonomy' and 'experiential learning'. Only gender correlated with the total summed score of the questionnaire, and two latent factors. CONCLUSIONS: Teaching about SDM occurs to some degree throughout New Zealand. The questionnaire captures the experience of learning in this area with a three-factor structure; enabling personhood, enhancing decisional autonomy and experiential learning.

Between the convention and conventional practice: Israeli social workers' recommendations regarding the legal capacity of people with disabilities.

BACKGROUND: Following the convention on the rights of persons with disabilities (CRPD), various countries have recently amended their legal capacity laws with the aim of restricting the use of guardianship and increasing the use of other, less restrictive practices, mainly supported decision making. As social workers have a key role in carrying out these reforms, this study examines how Israeli social workers make legal capacity-related decisions. METHOD: Semi-structured interviews with 27 Israeli social workers. RESULTS: Thematic analysis identified three factors driving social workers' recommendations regarding guardianship and supported decision-making: the person's diagnosis and functioning level, and the presence of a supportive family. A fourth factor, the person's preferences, played a complex and more limited role. CONCLUSIONS: Many changes have yet to be made to fully apply the support paradigm in Israel, since social workers still tend to base their recommendations on factors not fully aligned with the CRPD.

Person-environment fit of environmental support provided during medical consultations with older patients.

As some cognitive functions decline in old age, the ability to decide about important life events such as medical treatment is endangered. Environmental support to improve the comprehension of health-related information is therefore necessary. With a small-scale explorative approach, the present survey study aimed at investigating person-environment fit (PE-fit) of support provided during medical consultations. This fit was calculated by assessing the match between aids provided by five medical practitioners during medical consultations and aids most appreciated by the geriatric patients (N = 88). The results showed that the largest discrepancies of used and appreciated aids could be found concerning the opportunity to discuss decisions with relatives, the possibility to take notes, the use of objects, pictures and a keyword list. Female patients indicated a lower PE-fit. These findings highlight discrepancies between the use of specific aids and the wishes of patients and call for thoughtful use of aids during consultations with geriatric patients.

Planning for the future of a pediatric kidney transplant recipient with special needs: A parent's perspective.

I was asked to write this article to share with medical professionals, my view as a parent with a child who has special needs and needs a transplant. It is a detailed story from a parent's point of view on what it is like to have a child with special needs with serious medical complications and how I went about finding and managing my daughter's care. I summarize my own personal experiences based on my years of planning for my daughter.

"It was one of those complicated cases": health practitioners' perspectives and practices of providing end-of-life care for people with profound intellectual and multiple disability.

BACKGROUND: Due to developments in health and social care, people with profound intellectual and multiple disability (PIMD) are living longer than ever before, meaning they are increasingly experiencing life-threatening health conditions requiring palliative care. Little is known about providing end-of-life care for people with PIMD. The aim of this study was to explore health practitioners' perspectives and practices relating to end-of-life decision-making and planning for people with PIMD. METHODS: Seven in-depth semi-structured interviews were conducted with health practitioners employed in a range of hospital and community services throughout Melbourne, Australia. Questions were designed to gather information about their experience, perceptions, and attitudes relating to people with PIMD during and at the end of their life. Each interview, ranging from 40 to 60 min in length, was audio recorded and transcribed. Inductive thematic analysis was used to analyse the data. RESULTS: Four main themes emerged: limited participation, bias, dignity, and quality of death. Health practitioners indicated that people with PIMD are frequently excluded from participating in decision-making related to end-of-life care. Participants discussed reasons for this exclusion including challenges with communication and cognition. Participants reported a need for additional support and guidance in providing care for people with PIMD at the end of life. Professional and family bias played a role in end-of-life decision-making for people with PIMD. Participants reported a disproportional focus by palliative care practitioners on physical as opposed to emotional and spiritual well-being for patients with PIMD at the end of life. Finally, participants reported that people with PIMD generally did not die in specialised palliative care settings, but in segregated supported living environments. CONCLUSIONS: Due to negative perceptions of a person with PIMD's decision-making capacity, people with PIMD are likely to be assessed as unable to express choice and preference regarding end-of-life care and are offered limited opportunity to be involved in their own end-of-life care. This research provides guidance for the development of training and professional development relating to people with PIMD at the end of life. It is hoped that this will increase the accessibility of end-of-life services for people with PIMD, ensuring that a respectful and dignified death can be a reality for all humankind regardless of disability.