The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Resource utilization and cost analyses of home-based palliative care service provision:The Niagara West End-of-Life Shared-Care Project

Background: Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. Aim: This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. Design: To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Results: Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 CAN) were 1,625,658.07 - or 17,112.19 per patient/117.95 per patient day. Conclusion: While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations. © 2012 The Author(s).

Working with fathers to improve children's well-being: Results of a survey exploring service provision and intervention approach in the UK

Interventions for fathers are a recent growth area in family services. Although some specific approaches are beginning to be evaluated, there is little known about what kinds of interventions are more generally being used in practice. A web-based survey of practitioners was conducted in the UK, with contact being made via local authority service managers. Two hundred and twenty-one responses were received from 53% of local authorities. Both interventions specifically for fathers and services for both parents were targeted in the survey. Results are reported on organisational location; targeting of services; type of intervention; numbers and percentages of men attending services, recruitment of fathers; evaluation strategies; and ideological and theoretical approaches. Numbers of fathers engaged are relatively low - e.g. the median annual number of fathers attending structured parenting courses was eight and in courses for both parents, 21% of those attending were men. Responses on ideological and theoretical approaches suggest that overt gender politics play only a small part, but that the dominant views of practitioners are in line with mainstream approaches to parenting support. Cognitive and behavioral approaches were the most popular.

A Review of Service Provision for men aged 50+ (Belfast)

Friday 26th September 2014 saw the launch of a report which examines service provision for men aged 50+ in the greater-Belfast area. This research was undertaken by a team from Queen’s University Belfast on behalf of the Older Men’s Steering Group within Age Partnership Belfast. The research sought to: (i) review the extent and impact of current community, voluntary, statutory or private sector services which are aimed at combating social isolation among men in the Belfast area, and (ii) identify how these services are meeting current need, and ways in which they may be developed to meet future requirements. The report is now available online at: www.volunteernow.co.uk/fs/doc/publications/men-aged-50-final-report.pdf

Regress? React? Resolve?: An evaluation of mental health service provision in Northern Ireland

Report prepared for Action Mental Health by Queen’s University Belfast

Service Provision for Children and Young People with Acquired Brain Injury; Practice Recommendations: – International Paediatric Brain Injury Society (IPBIS).

Background: Providing appropriate rehabilitation services for Acquired Brain Injury (ABI) in childhood presents a number of challenges for caregivers, health and education professionals and the young person as they develop.
Primary Objective: To record the challenges and possible creative solutions generated by an international group of professionals to address the needs of children with ABI.
Review of Information: Recommendations were generated from children’s special interest group meetings of the International Brain Injury Association (Turin Italy, 2001, Stockholm Sweden, 2003, Melbourne Australia, 2005, Lisbon Portugal, 2008) and through meetings of the International Paediatric Brain Injury Society (IPBIS), formed in 2009. Delegates participating in the workshops were representative of nations from around the world and included The Netherlands, New Zealand, Australia, UK, Finland, Germany, South Africa, USA, Canada, Sweden, Brazil and Italy.
Outcomes: The information presented is based on a retrospective review of those meetings and the summaries of the topics considered.

Palliative Medicine:Scoping the level and extent of service provision to people with intellectual disability at end of life Poster Presentation

Background: Concerns exist about the end of life care
that people with intellectual disabilities receive. This population
are seldom referred to palliative care services and
inadequate data sets exist about their place of death.
Aim: To scope the extent of service provision to people
with intellectual disabilities at the end of life by specialist
palliative care and intellectual disability services in one
region of the United Kingdom.
Methods: As part of a larger doctoral study a regional survey
took place of a total sample (n=66) of specialist palliative
care and intellectual disability services using a postal
questionnaire containing forty items. The questionnaire
was informed by the literature and consultation with an
expert reference group. Data were analysed using SPSS to
obtain descriptive statistics.
Results: A total response rate from services of 71.2%
(n=47) was generated. Findings showed a range of experience
among services in providing end of life care to people
with intellectual disabilities in the previous five years, but
general hospitals were reported the most common place of
death. A lack of accessible information on end of life care
for people with learning disabilities was apparent. A few
services (n=14) had a policy to support this population to
make decisions about their care or had used adapted Breaking
Bad News guidelines (n=5) to meet their additional
needs. Both services recognised the value of partnership
working in assessing and meeting the holistic needs of
people with intellectual disabilities at end of life.
Conclusions: A range of experience in caring for people
with intellectual disabilities was present across services,
but more emphasis is required on adapting communication
for this population to facilitate them to participate in their
care. These findings could have international significance
given that studies in other countries have highlighted a
need to widen access to palliative care for this group of
people.

Towards a person-centred ‘culture’: the use of community development approaches in the Independent Youth Counselling Service in West Belfast

This paper is drawn from a qualitative study of clients, counsellors and the supervisors views of the value and impact of the Independent Youth Counselling Service (IYCS) in West Belfast. Data collection combined semi-structured interviews, focus groups and an open-ended questionnaire. The findings indicate the significance of factors above and beyond the person-centred counselling experience, in maximising the potential for growth and development for clients and counsellors. This holistic approach to counselling service provision employs a body of community development processes, which collectively combine to embed the counselling service in a complementary principled approach. This paper explores how these community development features bolster the counselling experience to promote a culture of person-centeredness, thereby increasing the empowerment of the client.

Championing the interface between mental health and child protection: evaluation of a service initiative to improve joint working in Northern Ireland

The importance of establishing effective interagency working between adult mental health services and child care services in order to safeguard children has been repeatedly identified by research, policy, inquiries and inspection reports. This article reports on the evaluation of an initiative in one Health and Social Care Trust in Northern Ireland that aimed to facilitate joint working and so improve service provision and protection for children and families. The Champions Initiative involved identifying a champion in each multi-disciplinary community mental health team and in each family and child care team who would have responsibility for providing information, promoting joint working and identifying any obstacles to better co-operation. The evaluation of this initiative assessed levels of experience, training, confidence, understanding and awareness in the Champions and their team members at baseline. The Champions and their Team Leaders were then followed-up after six months to obtain their qualitative views of the impact of the initiative. The results include comparisons between mental health and child care staff, and crucially, views about whether the initiative has had any impact on working together. This study also generated recommendations for further service development in this complex and important area of practice.

Hospice at Home service:The carer's perspective

Goals of the work: The aim of this study was to explore the bereaved caregivers' experience of the Hospice at Home service delivered in one region of the UK. Materials and methods: Three hundred and ten bereaved caregivers identified by the Community Specialist Palliative Care Team or Hospice at Home nurse, who met inclusion criteria, were sent a postal questionnaire to explore their views and experiences of the Hospice at Home service. Data were collected during 2002. Main results: In total, 128 caregivers responded, providing a 41% response rate. Most caregivers believed that the Hospice at Home service enabled their loved one's wish to be cared for and to die at home to be fulfilled. A number of suggestions were made relating to increased awareness of the service, training for staff, coordination of service delivery and bereavement support. Conclusions: The bereaved caregivers were thankful for the Hospice at Home service; however, the need for practical support, increased awareness of the Hospice at Home service and bereavement support were also identified. Although the bereaved caregivers provided a valuable insight in evaluating service provision, it is acknowledged that some caregivers are often so grateful for the treatment and care received that they tend to forget or ignore their less pleasant experiences. Further research is therefore required using an in-depth qualitative approach investigating on the carers' views and experiences of accessing the Hospice at Home service. © 2006 Springer-Verlag.