Amy Waugh

Designing a complex intervention for dementia case management in primary care

BackgroundCommunity-based support will become increasingly important for people with dementia, but currently services are fragmented and the quality of care is variable. Case management is a popular approach to care co-ordination, but evidence to date on its effectiveness in dementia has been equivocal. Case management interventions need to be designed to overcome obstacles to care co-ordination and maximise benefit. A successful case management methodology was adapted from the United States (US) version for use in English primary care, with a view to a definitive trial. Medical Research Council guidance on the development of complex interventions was implemented in the adaptation process, to capture the skill sets, person characteristics and learning needs of primary care based case managers.MethodsCo-design of the case manager role in a single NHS provider organisation, with external peer review by professionals and carers, in an iterative technology development process.ResultsThe generic skills and personal attributes were described for practice nurses taking up the case manager role in their workplaces, and for social workers seconded to general practice teams, together with a method of assessing their learning needs. A manual of information material for people with dementia and their family carers was also created using the US intervention as its source.ConclusionsCo-design produces rich products that have face validity and map onto the complexities of dementia and of health and care services. The feasibility of the case manager role, as described and defined by this process, needs evaluation in ‘real life’ settings.

What would encourage help-seeking for memory problems among UK-based South Asians? A qualitative study

Objectives People from Minority Ethnic groups tend to present late to dementia services, often in crisis. Culture-specific barriers to help-seeking seem to underlie this. We sought to determine these barriers to timely help-seeking for dementia among people from South Asian backgrounds and what the features of an intervention to overcome them would be. Study design Qualitative study to delineate barriers to and facilitators of help-seeking for South Asian adults with dementia through focus groups and individual interviews. Setting Community settings in and around Greater London. Participants To achieve a maximum variation sample, we purposively recruited 53 English or Bengali speaking South Asian adults without a known diagnosis of dementia through community centres and snowballing. Results Participants ranged in age from 18 to 83 years, were mostly female and were 60% Bangladeshi. We recruited people from different religions and occupational backgrounds and included those with experience of caring for someone with dementia as well as those without this experience. Participants identified four main barriers to timely diagnosis: barriers to help-seeking for memory problems; the threshold for seeking help for memory problems; ways to overcome barriers to help-seeking; what features an educational resource should have. Conclusions We have identified the features of an intervention with the potential to improve timely dementia diagnosis in South Asians. The next steps are to devise and test such an intervention.

Understanding mothers’ experiences of positive changes after neonatal death

ABSTRACT Background: The death of a neonatal baby has the potential for parents to experience many negative outcomes. Post traumatic growth describes positive personal change from the struggle with a traumatic event. This has not been explored in this context. Objective: This study sought to understand the experiences of mothers whose neonatal baby had died; in particular, whether mothers were able to experience any positive changes in their lives since the death of their baby. The study also sought to explore what factors may have facilitated or prevented these changes. Method: Ten mothers were recruited, whose baby had died in the neonatal period between two and 10 years previously. Mothers completed semi-structured, one-to-one interviews. Interview transcripts were analysed using Template Analysis. Results: Despite ongoing sadness, mothers recognized positive personal changes in their self-perception, relationships and life philosophy which were consistent with the post-traumatic growth model. Mothers also identified facilitators and barriers to these changes which were categorized into five themes: ‘Person-centred care’, ‘making sense’, ‘personal coping strategies’, ‘learning to live with it’ and ‘identity’. Conclusions: This study identified that the mothers made a conscious personal decision to cope with their experience. This is a unique finding which requires further exploration. Facilitators and barriers of growth both occurred as elements within the same five themes, indicating that all identified domains before and after the death have the potential to facilitate or to prevent personal growth. Importantly, these findings indicate that person-centred services, which are responsive to individual needs at all stages, are vital when providing maternity care in the context of loss.

What aspects of post-traumatic growth are experienced by bereaved parents? A systematic review

ABSTRACT Background: The death of a child of any age can be traumatic and can leave bereaved parents experiencing negative psychological outcomes. Recent research has shown the potential utility for understanding more about the development of post-traumatic growth following bereavement. Objective: This paper sought to identify the aspects of post-traumatic growth experienced by bereaved parents and the factors that may be involved in facilitating or preventing post-traumatic growth. Methods: A systematic search of peer-reviewed articles with a primary focus on positive personal growth in bereaved parents was conducted. Thirteen articles met the inclusion criteria, and were analysed and synthesized according to common and divergent themes. Results: Bereaved parents were able to experience elements of growth proposed by the post-traumatic growth model (changes in self-perception, relationships, new possibilities, appreciation of life and existential views). The papers also indicated that (1) mothers appeared to experience more growth than fathers, (2) cultural variation may impact on some participants’ experience of growth, and (3) participants were able to identify growth only once some time had passed. Potential facilitators of post-traumatic growth involved making meaning, keeping ongoing bonds with the child, being with bereaved families, and family and personal characteristics. Social networks were identified as having the potential to be either a facilitator or a barrier to growth. Conclusions: In addition to experiencing grief, bereaved parents may experience aspects of post-traumatic growth, and a variety of factors have been identified as potential facilitators and barriers of these changes. The findings may have implications for support services (e.g. expert-by-experience services).