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Shared Decision-Making and Information Needs among People with Generalized Anxiety Disorder

ABSTRACT: Shared decision making (SDM) aims to involve patients in the decisions about their care, considering their preferences, values and concerns about the different treatment options. However, research shows that people with mental health problems have considerable unmet information needs about their condition. This community-based cross-sectional study explores the SDM process and information needs among people with Generalized Anxiety Disorder (GAD), as an initial step in the design and development of a Patient Decision Aid for this population. Seventy participants completed an online survey with the Control Preference Scale, and questions about the perceived difficulty of past treatment decisions and the use of the Internet for searching for GAD-related information. Most participants preferred an active (42.9%) or collaborative role (41.4%) in the SDM process, and 53% did not perceive their preferred role. Information provided by healthcare professionals was considered insufficient by 28% of the sample, and over 30% reported using the Internet to look for GAD-related information at least once a week or more. The most relevant GAD-related information needs were general information (71.4%), information on self-help groups (65.7%), recommendations on how to face this disorder (61.4%) and information on treatment options (50%). Exploratory analyses showed that patients who perceived an active participation were more likely to search for information frequently (p = 0.038), and those who felt more involved than desired tended to search for more themes (p = 0.049). In summary, the study showed that a considerable percentage of GAD patients have unmet needs related to decision-making participation and information.

SUBMITTER: Ramos-Garcia V

PROVIDER: S-EPMC8314357 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Introduction: While the majority of young people who meet the criteria for being considered at increased risk of psychosis do not go on to develop a psychotic disorder, young people are currently being identified and treated in early intervention services. Ethical concerns have been raised concerning the decision about whether or not to provide treatment, and if so, what type of treatment. This study sought to support young people themselves to make these decisions with support from their clinician through a shared decision-making approach, facilitated by an online decision aid. Methods: This project used the International Patient Decision Aid Standards (IPDAS) to guide the development and piloting of an online decision aid across two phases: (1) qualitative, semi-structured focus groups with young people who were past clients and clinicians from an early psychosis service; and (2) pilot testing of the decision aid with clinicians and young people who were current clients to finalize the development. Results: Issues discussed by clinicians in the focus group were grouped into three main areas: (1) engagement phase; (2) assessment and priorities for treatment; and (3) initial and ongoing decision making. Clients focused on the context in which the decisions were made, including as they experienced initial feelings of resistance, and then acceptance of efforts made to describe and treat their mental health challenges. Clients highlighted the need for collaboration between themselves and their clinician, and the need to be equipped with the knowledge and tools to take care of themselves. These focus group data were used to refine the online decision aid. Pilot testing revealed that while it was overall useful and relevant, important limitations were noted by both clients and clinicians. Discussion: The use of a decision aid to facilitate shared decision making (SDM) in this area is feasible and has utility for both clients and clinicians. Use of such a tool can help to address the need to uphold the rights of young people as decision makers about their own care. Future efforts should embed decision aids within complex SDM interventions, and research to understand issues relating to implementation of these interventions.

Project description:BackgroundHealth care systems are increasingly moving towards more integrated approaches. Shared decision making (SDM) is central to these models but may be complicated by the need to negotiate and communicate decisions between multiple providers, as well as patients and their family carers; particularly for older people with complex needs. The aim of this review was to provide a context relevant understanding of how interventions to facilitate SDM might work for older people with multiple health and care needs, and how they might be applied in integrated care models.MethodsIterative, stakeholder driven, realist synthesis following RAMESES publication standards. It involved: 1) scoping literature and stakeholder interviews (n = 13) to develop initial programme theory/ies, 2) systematic searches for evidence to test and develop the theories, and 3) validation of programme theory/ies with stakeholders (n = 11). We searched PubMed, The Cochrane Library, Scopus, Google, Google Scholar, and undertook lateral searches. All types of evidence were included.ResultsWe included 88 papers; 29 focused on older people or people with complex needs. We identified four context-mechanism-outcome configurations that together provide an account of what needs to be in place for SDM to work for older people with complex needs. This includes: understanding and assessing patient and carer values and capacity to access and use care, organising systems to support and prioritise SDM, supporting and preparing patients and family carers to engage in SDM and a person-centred culture of which SDM is a part. Programmes likely to be successful in promoting SDM are those that allow older people to feel that they are respected and understood, and that engender confidence to engage in SDM.ConclusionsTo embed SDM in practice requires a radical shift from a biomedical focus to a more person-centred ethos. Service providers will need support to change their professional behaviour and to better organise and deliver services. Face to face interactions, permission and space to discuss options, and continuity of patient-professional relationships are key in supporting older people with complex needs to engage in SDM. Future research needs to focus on inter-professional approaches to SDM and how families and carers are involved.

Project description:ObjectivesLittle is known about the cancer experience and support needs of people with dementia. In particular, no evidence currently exists to demonstrate the likely complex decision-making processes for this patient group and the oncology healthcare professionals (HCP) involved in their care. The aim of this study was to explore the cancer-related information needs and decision-making experiences of patients with cancer and comorbid dementia, their informal caregivers and oncology HCPs.DesignCross-sectional qualitative study. Semistructured interviews were conducted face to face with participants. Interviews were audio recorded and transcribed prior to thematic analysis.SettingPatients with a diagnosis of cancer and dementia, their informal caregivers and oncology HCPs involved in their care, all recruited from a regional treatment cancer centre.ParticipantsPurposeful sample of 10 patients with a diagnosis of cancer-dementia, informal caregivers (n=9) and oncology HCPs (n=12).ResultsFour themes were identified: (1) leading to the initial consultation-HCPs require more detailed information on the functional impact of dementia and how it may influence cancer treatment options prior to meeting the patient; (2) communicating clinically relevant information-informal caregivers are relied on to provide patient information, advocate for the patient and support decision-making; (3) adjustments to cancer care-patients with dementia get through treatment with the help of their family and (4) following completion of cancer treatment-there are continuing information needs. Oncology HCPs discussed their need to consult specialists in dementia care to support treatment decision-making.ConclusionsAlthough patients with cancer-dementia are involved in their treatment decision-making, informal caregivers are generally crucial in supporting this process. Individual patient needs and circumstances related to their cancer must be considered in the context of dementia prognosis highlighting complexities of decision-making in this population. Oncology teams should strive to involve healthcare staff with dementia expertise as early as possible in the cancer pathway.

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Shared Decision-Making and Information Needs among People with Generalized Anxiety Disorder

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