11 research outputs found
A qualitative study exploring the difficulties influencing decision making at the end of life for people with dementia
Protocol for intervention development to improve adolescent perinatal mental health in Kenya and Mozambique: The INSPIRE project
Introduction: Mental health interventions have traditionally been developed by clinicians and researchers without the meaningful engagement and partnership with those who would receive, deliver, and fund them. Recent progress has highlighted the importance of the co-design of interventions, through stakeholder participation, as a means of increasing the integration of mental health interventions into existing health, education, and social care systems. This protocol describes the pre-implementation phase of the INSPIRE (Innovative approaches to adolescent perinatal wellbeing) project which aims to identify challenges, and design and test interventions to promote mental wellbeing and good mental health of adolescent girls during pregnancy and the year after birth with local stakeholders in Kenya and Mozambique.
Methods: A participatory approach that blends human-centred design, systems thinking, and implementation science methods will be used to engage adolescents (aged 15–19 years), their families, and other stakeholders who can influence implementation efforts, in planning and preparing interventions. First, an understanding of context, barriers, and opportunities related to adolescent perinatal mental health will be elicited through individual interviews, focus group discussions, and observations. This will be complemented by a scoping review of relevant interventions. The research team will identify contextual insights relating to adolescent and system characteristics, strengths, and challenges. These will be shared with and refined by stakeholders. Thematic analysis will be conducted to describe the experiences of adolescent girls, and barriers and enablers to maintaining good mental health. The former will be triangulated with the Context and Implementation of Complex Intervention (CICI) framework. Causal loop diagrams will be developed to illustrate the individual and system-level variables which influence adolescent perinatal mental health. Stakeholder workshops will be used to identify priorities, brainstorm potential interventions, develop a program theory, and prototype an intervention and implementation strategies. Intervention acceptability, appropriateness, and feasibility will be assessed, and a theory of change map finalized.
Results: To date the study has recruited 169 participants to complete individual interviews, focus group discussions and observation activities.
Conclusions: It is anticipated that the use of a participatory and systematic approach to the development of an intervention to improve mental health, will improve its perceived appropriateness, acceptability, and feasibility among key stakeholders. This may, in turn, significantly improve its availability, uptake, and sustainability
Erratum to: A co-design process developing heuristics for practitioners providing end of life care for people with dementia
International Representation in Psychiatric Literature: Has the Trend Changed? Review of 11 Leading Psychiatric Journals
Aim: A survey of six of the highest impact psychiatric journal articles (2001), revealed the underrepresentation of non-Western countries. The current study looked at the new trends in the representation of psychiatric literature. We aimed to quantify the articles from High-Income Countries (HIC) and compare it with the rest of the world (RoW) in 11 high impact journals. Materials and Methods: A survey of the country of origin of research data and authors in published literature of 11 psychiatric journals: six of the same journals previously surveyed and five new journals from 2014 to 2016. Results: Out of the total of 5278 articles, the maximum number of 2093 (39.65 %) were from the other Euro-American countries (OEAC), followed by 1546 (29.29 %) from the United States of America (USA), and 727 (13.77 %) from the United Kingdom (UK), and 754 (14.28 %) were from rest of the world (RoW). The highest was in the Journal of Neurology, Neuro-Surgery and Psychiatry 131 (17.37 %), followed by the British Journal of Psychiatry, 85 (11.27 %) and Molecular Psychiatry; 65 (8.62 %). A comparison between the previous six journals and the current survey showed that RoW publications have increased from 6 % to 13.84 % over 15 years. Out of the additional five journals surveyed, a total of 327 papers were from RoW and the Journal of Neurology, Neuro-Surgery and Psychiatry had the highest representation of RoW literature: 131 (40 %). It was more than double of publications by the Lancet Psychiatry and Molecular Psychiatry. Biological Psychiatry had 46 (14.06 %) papers followed by the World Psychiatry which carried 25 (7.64 %). Conclusion: An overall increase in the number of articles from RoW is evident. It is a welcome trend; however, a significant underrepresentation is still evident
How do hospital doctors manage patients with medically unexplained symptoms: a qualitative study of physicians
A co-design process developing heuristics for practitioners providing end of life care for people with dementia
Background
The end of life for someone with dementia can present many challenges for practitioners; such as, providing care if there are swallowing difficulties. This study aimed to develop a toolkit of heuristics (rules-of-thumb) to aid practitioners making end-of-life care decisions for people with dementia.
Methods
An iterative co-design approach was adopted using a literature review and qualitative methods, including; 1) qualitative interviews and focus groups with family carers and 2) focus groups with health and care professionals. Family carers were recruited from a national charity, purposively sampling those with experience of end-of-life care for a person with dementia. Health and care professionals were purposively sampled to include a broad range of expertise including; general practitioners, palliative care specialists, and geriatricians. A co-design group was established consisting of health and social care experts and family carers, to synthesise the findings from the qualitative work and produce a toolkit of heuristics to be tested in practice.
Results
Four broad areas were identified as requiring complex decisions at the end of life; 1) eating/swallowing difficulties, 2) agitation/restlessness, 3) ending life-sustaining treatment, and 4) providing “routine care” at the end of life. Each topic became a heuristic consisting of rules arranged into flowcharts. Eating/swallowing difficulties have three rules; ensuring eating/swallowing difficulties do not come as a surprise, considering if the situation is an emergency, and considering ‘comfort feeding’ only versus time-trialled artificial feeding. Agitation/restlessness encourages a holistic approach, considering the environment, physical causes, and the carer’s wellbeing. Ending life-sustaining treatment supports practitioners through a process of considering the benefits of treatment versus quality-of-life and comfort. Finally, a heuristic on providing routine care such as bathing, prompts practitioners to consider adapting the delivery of care, in order to promote comfort and dignity at the end of life.
Conclusions
The heuristics are easy to use and remember, offering a novel approach to decision making for dementia end-of-life care. They have the potential to be used alongside existing end-of-life care recommendations, adding more readily available practical assistance. This is the first study to synthesise experience and existing evidence into easy-to-use heuristics for dementia end-of-life care
Guiding practitioners through end of life care for people with dementia:The use of heuristics
BackgroundEnd of life care (EOLC) for people with dementia can present a multitude of challenges and difficult decisions for practitioners. These challenges may include assessment and management of difficulties with eating and swallowing, responding to agitation, treating pain, and managing recurrent infections. Practitioners sometimes lack both confidence in making end of life decisions and guidance. This study developed an alternative to lengthy guidelines, in the form of heuristics which were tested in clinical settings. The aim of this study was to test the usability and acceptability of a set of heuristics which could be used by practitioners providing EOLC for people with dementia in a variety of clinical and care settings.MethodsA three phase co-design process was adopted: 1) Synthesis of evidence and outputs from interviews and focus groups with family carers and practitioners, by a co-design group, to develop heuristics; 2) Testing of the heuristics in five clinical or care settings for six months; 3) Evaluation of the heuristics at three and six months using qualitative individual and group interviews.ResultsFour heuristics were developed covering: eating and swallowing difficulties, agitation and restlessness, reviewing treatment and interventions at the end of life, and providing routine care. The five sites reported that the heuristics were simple and easy to use, comprehensive, and made implicit, tacit knowledge explicit. Four themes emerged from the qualitative evaluation: authority and permission; synthesis of best practice; providing a structure and breaking down complexity; and reassurance and instilling confidence.ConclusionUse of heuristics is a novel approach to end of life decision making in dementia which can be useful to both experienced and junior members of staff making decisions. Heuristics are a practical tool which could overcome a lack of care pathways and direct guidance in end of life care for people with dementia
Can health promotion videos ‘go viral’? A non-randomised, controlled, before-and-after pilot study to measure the spread and impact of local language mobile videos in Burkina Faso
Protocol for intervention development to improve adolescent perinatal mental health in Kenya and Mozambique: The INSPIRE project
Introduction
Mental health interventions have traditionally been developed by clinicians and researchers without the meaningful engagement and partnership with those who would receive, deliver, and fund them. Recent progress has highlighted the importance of the co-design of interventions, through stakeholder participation, as a means of increasing the integration of mental health interventions into existing health, education, and social care systems. This protocol describes the pre-implementation phase of the INSPIRE (Innovative approaches to adolescent perinatal wellbeing) project which aims to identify challenges, and design and test interventions to promote mental wellbeing and good mental health of adolescent girls during pregnancy and the year after birth with local stakeholders in Kenya and Mozambique.
Methods
A participatory approach that blends human-centred design, systems thinking, and implementation science methods will be used to engage adolescents (aged 15–19 years), their families, and other stakeholders who can influence implementation efforts, in planning and preparing interventions. First, an understanding of context, barriers, and opportunities related to adolescent perinatal mental health will be elicited through individual interviews, focus group discussions, and observations. This will be complemented by a scoping review of relevant interventions. The research team will identify contextual insights relating to adolescent and system characteristics, strengths, and challenges. These will be shared with and refined by stakeholders. Thematic analysis will be conducted to describe the experiences of adolescent girls, and barriers and enablers to maintaining good mental health. The former will be triangulated with the Context and Implementation of Complex Intervention (CICI) framework. Causal loop diagrams will be developed to illustrate the individual and system-level variables which influence adolescent perinatal mental health.
Stakeholder workshops will be used to identify priorities, brainstorm potential interventions, develop a program theory, and prototype an intervention and implementation strategies. Intervention acceptability, appropriateness, and feasibility will be assessed, and a theory of change map finalized.
Results
To date the study has recruited 169 participants to complete individual interviews, focus group discussions and observation activities.
Conclusions
It is anticipated that the use of a participatory and systematic approach to the development of an intervention to improve mental health, will improve its perceived appropriateness, acceptability, and feasibility among key stakeholders. This may, in turn, significantly improve its availability, uptake, and sustainability