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Patients with Functional Neurological Disorder (FND) often endure low quality of life. Understanding the diagnosis is critical to management, but patients with FND do not always receive appropriate information about their condition. The patient journey through healthcare services can be complex, with often long waits for specialist attention. Creating psychoeducation resources for patients is important to improve patient experience and outcomes. We developed a symptom self-management patient education booklet with an FND symptom recording template, using a co-production model, in a community neuropsychiatry setting.
Methods
We used co-production as part of a quality improvement project (QIP) at East Kent Neuropsychiatry Service, to produce a patient education booklet with symptom self-management information and a symptom recording template. The QIP cycle involved input from 11 participants. Initially, 3 medical students and 4 multi-disciplinary team members adapted an existing booklet, removing medical jargon and simplifying diagrams. The adapted booklet was distributed to patients with FND who were attending psychoeducation/Cognitive Behavioural Therapy group sessions. One week later, four patients discussed the booklet with a medical student facilitator; both quantitative and qualitative feedback was obtained. Feedback was gathered using an adapted 20 point Ensuring Quality of Information for Patients (EQIP) tool. Patient responses were recorded, and qualitative themes identified.
Results
Four themes were found from qualitative feedback during co-production: need for a glossary; an expanded resource list; more diagrams to simplify text; and for the booklet to also address family, friends, and carers. The EQIP questionnaire feedback emphasised that the booklet contained too much medical jargon and that it didn't personally address the reader. On average patients scored the booklet 53.33% using the EQIP questionnaire.
The booklet was further adapted and a glossary, further diagrams and a section addressing family, friends, and carers was added. Further resources were added and the text was simplified for clarity.
Conclusion
This QIP shows the value of co-producing information for an underserved patient population. Patient psychoeducation is a key part of treatment; involving patients at an early stage of the development of information and self-management tools will increase their acceptability to patients and improve the accessibility of patient psychoeducation.
Historical change is often driven by demands for inclusion by previously marginalized groups. Latin America’s most recent inclusionary turn was characterized by an emphasis on constitutionalism, an explosion of popular participation, and a commitment to social policies that empowered and lifted millions of people out of poverty. Practices of citizenship were at the heart of these struggles for inclusion. Yet failure to ratchet-up citizenship rights leaves the region vulnerable to the undoing of inclusionary reforms, and thus a return to exclusion, repression, and democratic backsliding. To trace the evolution of inclusion in the region, and to better understand how cycles of inclusion and exclusion have often eroded state capacity, this chapter outlines political logics of inclusion, describes how these logics have changed over historical periods, analyzes the structural-historical conditions that shape whether inclusion threatens the interests of powerful actors, sketches alternative pathways to inclusion, and discusses inclusionary outcomes and the unfinished business of building a citizens’ democracy. It compares cases varying along two dimensions: changes in the types of inclusion over time and differences in pathways to inclusion across the region. The breadth of the comparison brings structural-historical factors back into focus, without denying the importance of political institutions.
Scholarly attention has increasingly shifted from diminished subtypes of democracy to hybrid regimes, particularly competitive authoritarianism. Such regimes retain democracy’s formal features while failing to meet its minimum standards. When properties of distinct concepts like democracy and authoritarianism are combined, however, confusion, inaccuracy, and mischaracterization of cases may occur. By disaggregating political systems into electoral institutions, surrounding rights and freedoms, constitutionalism, and the rule of law, this article complicates the binary distinction between a midrange definition of democracy and competitive authoritarianism. A number of Andean cases are found to fall on the spectrum of defective democracies between these categories. Defective democracies break down when rulers violate the conditions necessary for institutionalized alternation in power by means of public participation and loyal opposition in an electoral regime. Given leaders’ reliance on electoral legitimacy, however, even defective democracies may prove surprisingly resilient.
At the time of the decision to negotiate the North American Free Trade
Agreement (NAFTA), advocates argued that closer integration with Canada
and the United States would have a democratizing influence on
Mexico's
political regime (Baer and Weintraub, 1994: 174–79; Pastor, 1993: 67).
Critics of the deal suggested just the opposite, insisting that
NAFTA might perpetuate or even reinvigorate authoritarian rule (Aguilar
Zinser, 1993: 203–15; Castañeda 1996). With the breakthrough elections
of July 2000 and the transfer of executive power to an opposition party
the — PAN, or National Action Party — it is timely to ask: were the
advocates of NAFTA right all along? Was NAFTA the impetus for
Mexico's
long overdue transition to democracy?
Political parties are critical to Latin American democracy. This was demonstrated in Peru, where an atomized, candidate-centered party system developed after Alberto Fujimori's 1992 presidential self-coup. Party system decomposition weakened the democratic opposition against an increasingly authoritarian regime. Since the regime collapsed in 2000, prospects for party rebuilding have been mixed. Structural changes, such as the growth of the informal sector and the spread of mass media technologies, have weakened politicians' incentive to build parties. Although these changes did not cause the collapse of the party system, they may inhibit its reconstruction.
In the Children's Department of the Maudsley Hospital an “Item Sheet” is routinely completed in respect of each child who attends. The items on this sheet (or “check-list”) cover a wide range of possible features in a child's personality, history, background and environment, as well as in his psychological and physical condition, and symptomatology.
A number of samples of these Item Sheets have been submitted to statistical analysis, with a view to identifying any common factors that may be present in the case data they summarize. The various samples have been arrived at according to age and sex of the children concerned. An earlier paper (1) has described the results of this procedure in respect of two such samples, boys and girls between eight and ten years of age. A subsequent paper will give an account of the results in respect of thirteen to fifteen year olds. The present report gives the results that emerged for the younger ages of referral to the clinic, boys and girls between approximately five and seven years of age.