Continuing Bonds with Children and Bereaved Young People: A Narrative Review

Background:- Finding alternative ways to reconnect with the deceased is a common feature of bereavement. However, it is currently unclear how bereaved children/young people establish and develop a ‘continuing bond’ with deceased family members. Aim:- To investigate how bereaved young people continue bonds with deceased family members. Design:- A systematically conducted narrative review was conducted using six electronic databases; CINAHL, Medline, EMBASE, PsycINFO, PubMed and BNI. Limiters were applied to peer-reviewed articles published in English. Studies were assessed for methodological quality using the JBI Critical Appraisal Tools. Results:- Nineteen articles were included in the review. Three overarching themes were generated; unintended connections, intended connections, and internalised connections. Conclusion:- Bereaved young people establish a sense of connection with deceased family members through various means (e.g. unprovoked/spontaneous reminders, physical mementos, internalised memories). Some connections are unintended and occur spontaneously. However, other young people will specifically seek ways to remember the deceased to provide a sense of enduring connection

A scoping exercise to identify the needs of people affected by cancer and key staff for a future welfare benefit service in Fife

This scoping exercise was undertaken to identify the current provision of welfare benefit advice services in Fife, any cancer-specific provision in Scotland and gather views on the needs of people aff ected by cancer, the public and key staff groups for a future welfare benefit service in Fife. It addresses 5 main questions: a. What is the current provision of welfare benefit advice services in Fife? b. What is the existing knowledge of welfare benefi ts among staff involved in the care of people aff ected by cancer, and how do they see their role in this issue? c. What is the existing knowledge and involvement of patients and carers in accessing advice and support in pursuit of benefits? d. What barriers exist to professionals and staff in helping people affected by cancer to take up the welfare benefits available? e. What type of welfare benefit service would recognise and meet the needs of people affected by cancer and key staff in Fife

Using the Carers’ Alert Thermometer tool to identify needs and support family caregivers of people with Motor Neurone Disease: Moving beyond needs assessments

BackgroundFamily caregivers of people with Motor Neurone Disease (MND)experience adverse health outcomes as a result of their caregivingexperience. This may be alleviated if their support needs are identifiedand addressed in a systematic and timely manner.The objective of this pilot study was to assess the feasibility andrelevance of the Carers’ Alert Thermometer (CAT) in home-based care,from the perspective of MND family caregivers. The tool provides aformal structure to facilitate discussions with caregivers to enable needsto be addressed.MethodsThis mixed-method study was conducted in Western Australia (2020-21).Forty-one caregivers and five MND Advisors participated in trialling theCAT intervention which consisted of two encounters with Advisors (6-8weeks apart) to identify and address support needs through action plans.Caregivers’ feedback was obtained via telephone interviews and athematic analysis was undertaken.ResultsThirty caregivers completed two CAT assessments. Caregivers identifiedsupport priorities of managing their feelings and worries, providingemotional or spiritual care, information about the person’s condition andhow their care needs might change. Seventeen caregivers wereinterviewed and found that this assessment process adequatelyaddressed their needs and it should be continued, it brought the focusonto them to clarify problems and work through solutions. Theimprovements that were suggested by them, including betterinformation/education in palliative care, led to the development of anonline support/information toolkit, which served to empower caregiversand staff by accessing relevant information and resources

Home-based end of life care for children and their families: a systematic scoping review and narrative synthesis

AbstractProblem: There is a growing international drive to deliver children’s palliative care services closer to home. Families should have choice of where end of life (EOL) care is provided with home as one option. This review aims to establish the current international evidence base relating to children’s EOL care at home.Eligibility Criteria: A systematic scoping review was conducted in accordance with PRISMA-ScR reporting guidelines. Seven databases were searched to identify papers published between 2000-2018. Eligibility criteria included papers reporting children’s EOL care with specific relation to: home being the preferred place of death; services providing EOL care at home; family experiences of receiving support when their child died at home and professionals’ experiences of delivering this care.Sample: Twenty-three papers met the eligibility criteria and were included in the review.Results: Engagement of families in EOL care planning discussions was identified as a key factor to facilitate choice of setting. Consistent themes from the data suggest that providing access to care in the home 24/7 by a team of professionals with specialist paediatric palliative care knowledge is an essential aspect of any model of home-based EOL care.Discussion and Application to Practice: This is the first comprehensive review of home-based EOL care for children which offers a valuable contribution to policy, practice and research. The evidence mapped and synthesised in this review can inform the development of services to facilitate the provision of EOL care at home in line with the unique wishes and needs of children and families

Developing Cancer Services: Patient and Carer Experiences. Final Report

This is the Final Report of the Developing Cancer Services: Patient and Carer Experiences programme funded by the Scottish Executive Health Department undertaken by the Cancer Care Research Centre (CCRC). The report draws on a series of eight projects conducted as part of the programme between 2004 and 2007. There are separate final reports for each of these projects, which provide details of the methods, findings, conclusions and recommendations for each aspect of the work. These reports are available on the CCRC website www.cancercare.stir.ac.u

A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?

Background: Children’s palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family’s preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children’s end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why.Methods: Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n=6) and family interviews (n=10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n=20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom.Results: CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-hour medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed. Conclusions: The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice