Understanding mothers' experiences of positive changes after neonatal death.

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.

Antecedentes: la muerte de un bebé neonato tiene el potencial de que los padres experimenten muchos resultados negativos. Contrariamente, el crecimiento postraumático describe cambios personales positivos, que pueden ocurrir al enfrentarse con un evento traumático, no ha sido explorado en este contexto.Objetivo: Este estudio buscó comprender las experiencias de las madres cuyo bebé recién nacido había muerto, y en particular si las madres podían experimentar algún cambio positivo en sus vidas, desde la muerte de su bebé. El estudio también buscó explorar qué factores pudieron haber facilitado o impedido estos cambiosMétodo: Se reclutaron diez madres cuyo bebé había muerto en el período neonatal, entre dos y 10 años previos. Las madres completaron entrevistas semiestructuradas, una a una. Las transcripciones de la entrevista se analizaron mediante el análisis de plantillas.Resultados: A pesar de la tristeza en curso, las madres reconocieron cambios personales positivos, en su autopercepción, relaciones y filosofía de vida que eran consistentes con el modelo de crecimiento postraumático. Las madres también identificaron facilitadores y barreras para estos cambios que se categorizaron en cinco temas: 'Atención centrada en la persona', 'sentido', 'estrategias personales de afrontamiento', 'aprender a vivir con eso' e 'identidad'.Conclusiones: este estudio identificó que las madres tomaron una decisión personal consciente para sobrellevar su experiencia; este es un hallazgo único que requiere mayor exploración. Los facilitadores y las barreras de crecimiento se presentaron como elementos dentro de los mismos cinco temas, lo que indica que todos los dominios identificados antes y después de la muerte tienen el potencial de facilitar o prevenir el crecimiento personal. Es importante destacar que estos hallazgos indican que los servicios centrados en la persona, que responden a las necesidades individuales en todas las etapas, son vitales cuando se brinda atención de maternidad en el contexto de la pérdida.

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

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).

Antecedentes: La muerte de un niño de cualquier edad puede ser traumática y provocar resultados psicológicos negativos a los padres en duelo. Investigaciones recientes han demostrado la utilidad potencial de comprender más sobre el desarrollo del crecimiento postraumático luego del duelo.Objetivo: Este artículo buscó identificar los aspectos del crecimiento postraumático experimentados por los padres en duelo y los factores que pueden estar involucrados en facilitar o prevenir el crecimiento postraumático.Métodos: se realizó una búsqueda sistemática de artículos revisados por pares con un enfoque principal en el crecimiento personal positivo en padres en duelo. Trece artículos cumplieron los criterios de inclusión y se analizaron y sintetizaron de acuerdo con temas comunes y divergentes.Resultados: Los padres en duelo fueron capaces de experimentar los elementos de crecimiento propuestos por el modelo de crecimiento postraumático (cambios en la autopercepción, relaciones, nuevas posibilidades, apreciación de la vida y perspectivas existenciales). Los artículos también indicaron que (i) las madres parecían experimentar más crecimiento que los padres, (ii) la variación cultural puede afectar la experiencia de crecimiento de algunos participantes, y (iii) los participantes solo pudieron identificar el crecimiento una vez que pasó el tiempo. Los posibles facilitadores del crecimiento postraumático incluían encontrar significado, mantener lazos constantes con el niño, estar con familias en duelo y las características familiares y personales. Se identificó que las redes sociales tienen el potencial de ser tanto un facilitador como una barrera para el crecimiento.Conclusiones: Además de experimentar dolor, los padres en duelo pueden experimentar aspectos de crecimiento postraumático, y se han identificado una variedad de factores como posibles facilitadores y barreras de estos cambios. Los hallazgos pueden tener implicaciones para los servicios de apoyo (por ejemplo, servicios de expertos por experiencia).

An audit of change in clinical practice: from oxygen-driven to air-driven nebulisers for prehospital patients with acute exacerbations of chronic obstructive pulmonary disease (AECOPD).

BACKGROUND: In developed countries, ambulances normally carry oxygen cylinders, but not compressed air. Treatment of acute exacerbations of chronic obstructive pulmonary disease (AECOPD) with oxygen-driven nebulisers can result in hypercapnia and acidosis. Attempts to avoid this have involved interrupted administration of oxygen. However, small battery-powered air nebulisers are now available. This study aims to compare the prehospital oxygen saturations and treatment of patients suffering from AECOPD before and after the introduction of air nebulisers. METHODS: The oxygen saturations and treatment of 200 AECOPD patients before and 200 AECOPD patients after the introduction of air nebulisers were compared. Compliance with a target saturation of 88-92% was calculated. RESULTS: The median final oxygen saturation was lower for the post-intervention category (94%) than the pre-intervention category (96%). There was an increase in air nebuliser use from 0 to 56% (P < 0.001) and a decrease in oxygen use from 100 to 71.5% (P < 0.001). There was a numerical increase in the proportion of patients arriving at hospital with oxygen saturations of 88-92% following introduction of the air nebulisers (24 vs 16.5%) and a decrease in patients arriving with high saturations (67.5 vs 76.5%). The likelihood of achieving the target oxygen saturations following introduction of air nebulisers increased (odds ratio 1.598; 95% confidence interval 0.974, 2.621). CONCLUSION: The introduction of prehospital air nebulisers resulted in a reduction in oxygen therapy in patients with AECOPD and a lower median prehospital oxygen saturation. This study supports the use of air nebulisers in the prehospital setting.

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.

Introducing case management for people with dementia in primary care: a mixed-methods study.

BACKGROUND: Case management may be a feasible solution to the problem of service fragmentation for people with dementia. AIM: To adapt a US model of primary care-based case management for people with dementia and test it in general practice. DESIGN AND SETTING: Mixed-methodology case studies of case management implementation in four general practices: one rural, one inner-city, and two urban practices. Practice nurses undertook the case manager role in the rural and inner-city practices, and were allocated one session per week for case management by their practices. A seconded social worker worked full time for the two urban practices. METHOD: Participants were community-dwelling patients with dementia who were living at home with a family carer, and who were not receiving specialist care coordination. Case study methods included analysis of case loads and interviews with patients, carers, local NHS and other stakeholders, and case managers. Measures included numbers of patients with dementia and their carers, number of unmet needs identified, and actions taken to meet needs. Case manager records were compared with findings from interviews with patients and carers, and with other stakeholders. RESULTS: The number of eligible patients was smaller than expected. No practice achieved its recruitment target. Researchers identified more unmet needs than case managers. The practice nurse case managers reported lack of time and found research documentation burdensome. Patients and carers were positive about case management as a first point of contact with the practice, as a 'safety net', and for creating a one-to-one therapeutic relationship. CONCLUSION: Further investigation is required before case management for people with dementia and their carers can be implemented in primary care.

The effectiveness of collaborative care for people with memory problems in primary care: results of the CAREDEM case management modelling and feasibility study.

BACKGROUND: People with dementia and their families need support in different forms, but currently services are often fragmented with variable quality of care. Case management offers a way of co-ordinating services along the care pathway and therefore could provide individualised support; however, evidence of the effectiveness of case management for dementia is inconclusive. OBJECTIVE: To adapt the intervention used in a promising case management project in the USA and test its feasibility and acceptability in English general practice. DESIGN: In work package 1, a design group of varied professionals, with a carer and staff from the voluntary sector, met six times over a year to identify the skills and personal characteristics required for case management; protocols from the US study were adapted for use in the UK. The feasibility of recruiting general practices and patient-carer dyads and of delivering case management were tested in a pilot study (work package 2). An embedded qualitative study explored stakeholder views on study procedures and case management. SETTING: Four general practices, two in the north-east of England (Newcastle) one in London and one in Norfolk, took part in a feasibility pilot study of case management. PARTICIPANTS: Community-dwelling people with dementia and their carers who were not already being case managed by other services. INTERVENTION: A social worker shared by the two practices in the north-east and practice nurses in the other two practices were trained to deliver case management. We aimed to recruit 11 people with dementia from each practice who were not already being case managed. MAIN OUTCOME MEASURES: Numbers of people with dementia and their carers recruited, numbers and content of contacts, needs identified and perceptions of case management among stakeholders. RESULTS: Recruitment of practices and patients was slow and none of the practices achieved its recruitment target. It took more than 6 months to recruit a total of 28 people with dementia. Practice Quality and Outcome Framework registers for dementia contained only 60% of the expected number of people, most living in care homes. All stakeholders were positive about the potential of case management; however, only one of the four practices achieved a level of case management activity that might have influenced patient and carer outcomes. Case managers' activity levels were not related solely to time available for case management. Delivery of case management was hindered by limited clarity about the role, poor integration with existing services and a lack of embeddedness within primary care. There were discrepancies between case manager and researcher judgements about need, and evidence of a high threshold for acting on unmet need. The practice nurses experienced difficulties in ring-fencing case management time. CONCLUSIONS: The model of case management developed and evaluated in this feasibility study is unlikely to be sustainable in general practice under current conditions and in our view it would not be appropriate to attempt a definitive trial of this model. This study could inform the development of a case management role with a greater likelihood of impact. Different approaches to recruiting and training case managers, and identifying people with dementia who might benefit from case management, are needed, as is exploration of the scale of need for this type of working. TRIAL REGISTRATION: Current Controlled Trials ISRCTN74015152. FUNDING: This project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 52. See the NIHR Journals Library website for further project information.

Designing a complex intervention for dementia case management in primary care.

BACKGROUND: Community-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. METHODS: Co-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. RESULTS: The 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. CONCLUSIONS: Co-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.