Access and utilisation of maternity care for disabled women who experience domestic abuse: a systematic review

Background: Although disabled women are significantly more likely to experience domestic abuse during pregnancy than non-disabled women, very little is known about how maternity care access and utilisation is affected by the co-existence of disability and domestic abuse. This systematic review of the literature explored how domestic abuse impacts upon disabled women’s access to maternity services.

Methods: Eleven articles were identified through a search of six electronic databases and data were analysed to identify: the factors that facilitate or compromise access to care; the consequences of inadequate care for pregnant women’s health and wellbeing; and the effectiveness of existing strategies for improvement.

Results: Findings indicate that a mental health diagnosis, poor relationships with health professionals and environmental barriers can compromise women’s utilisation of maternity services. Domestic abuse can both compromise, and catalyse, access to services and social support is a positive factor when accessing care. Delayed and inadequate care has adverse effects on women’s physical and psychological health, however further research is required to fully explore the nature and extent of these consequences. Only one study identified strategies currently being used to improve access to services for disabled women experiencing abuse.

Conclusions: Based upon the barriers and facilitators identified within the review, we suggest that future strategies for improvement should focus on: understanding women’s reasons for accessing care; fostering positive relationships; being women-centred; promoting environmental accessibility; and improving the strength of the evidence base.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.