Transition From Children to Adult Hospice Services Research Proposal

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Hospice Leadership

The United Kingdom has recently experienced an increase in the number of children and young people with long-term health conditions. Actually, recent surveys have indicated a 30% increase in the number of these children and young people who need palliative care in the past decade (Hughes-Hallett & Gelb, 2012). Children and young people in the United Kingdom who need palliative care suffer from a series of severe disabilities and complex medical needs. The health sector in the UK has attempted to address this need through various initiatives including medical advances and hospice services that enable the population to live into adulthood. Unlike in other developed countries, children and young people requiring palliative care need to transit from children's to adults hospice services in the UK. The transition to these adult hospice services is a prospect for children and young people with life-limiting health conditions who need palliative care. However, these people face several challenges when moving to adults' hospice services, which necessitate improved hospice leadership in leading the transition in order to generate improved health outcomes for these children and young people.

Overview of Hospice Services in the United Kingdom

Children and young people in need of palliative care due to life-limiting conditions in the UK currently face the prospect of transition to adults hospice services (Kirk & Fraser, 2014, p.342). This is major prospect facing the population despite the lack of adequate information regarding transition experiences. Fraser et al. (2012) defines life-limiting conditions as situations that are characterized by lack of reasonable hope of cure and can contribute to death. The prevalence of life-limiting conditions among children and young people in the UK has doubled over the past decade (Hughes-Hallett & Gelb, 2012; Fraser et al., 2012). The increased prevalence of these conditions among this population has generated the need for specialist palliative care services.

The United Kingdom has addressed this need by requiring these children and young people to move from children's to adults' hospice services. This transition is a common part of hospice services in the UK despite the considerable difference between pediatric palliative care and adult palliative care. According to McNamara-Goodger & Cooke (2009), there are two major hospice services for children and young people in the UK i.e. ACT and Children's Hospices UK (p.41). These organizations have long-term vision through which every child or young person is treated for life threatening disease regardless of age, race or religion. Through these organizations, they obtain holistic, sustainable, high-quality, and family-oriented palliative care and support.

Differences between Children and Adults' Hospice Services

There are significant differences between children and adults' hospice services in the United Kingdom despite the increased use of transition as part of palliative care for children and young people. One of the major differences between these two hospice services is that children hospice services focus on providing palliative care to children and young people for over a prolonged period of time that could last for more than 20 years in certain cases (Fraser et al., 2012). On the contrary, adult hospice services tend to care for individuals with end-of-life situations, which are evaluated in days or weeks (Fraser et al., 2014). In essence, patients in adult hospice services require palliative care and support for less than 90 days whereas children hospice services provide extended palliative care and support. Secondly, unlike children hospice services, adults' hospice services are usually limited by resource constraints, which contribute to disease-directed care in adult palliative care services. Third, children and adults' hospice services differ with regards to focus i.e. children hospice services focus on improving the quality of life unlike adult hospice services that merely focus on end-of-life care. Consequently, children hospice services focus on the need for safeguarding to help improve the quality of life as the child and his/her family progresses through individual care journey (McNamara-Goodger & Cooke, 2009, p.40).

International Comparison of Hospice Services

Hospice services in the United Kingdom, which incorporate transition of children from children to adult hospice services, differ from hospice services in other countries such as Canada. Unlike the United Kingdom, Canada only has hospice services that are based on the concept of Hospice palliative care (HPC). Hospice palliative care (HPC) in Canada is an individual-centered approach that focuses on meeting the needs of the entire individual, enhances quality of living and dying people facing life-threatening conditions (Freeman et al., 2013,p.241). Through HPC, hospice services in Canada involve a mixture of active, compassionate therapies to offer comfort and support to patients living with or dying from life-threatening conditions.

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In addition, the UK utilizes an institutionalized approach to hospice services whereas Canada incorporates a palliative consultation team within its hospice service settings (Klinger et al., 2014, p.113). Canadian hospice services also emphasize share care approaches in hospice services to improve partnership in care delivery (Williams et al., 2010, p.2).

Similar to Canada, the United States simply has hospice services unlike the United Kingdom though it's governed by Medicare hospice benefits. Unlike in the UK, hospice services in the U.S. focus on management of physical and psychosocial distress and incorporate counseling and support for life-threatened patients and their families (Sterns & Miller, 2011, p.337). Hospice care in the U.S. is provided by an interdisciplinary team that mainly focuses on caring rather than curing a patient's condition. In Germany, hospice services differ from those in the UK with regards to the use of network approaches in providing care unlike the UK where there are children and adults' hospice services.

Transition Challenges for Children and Young People in UK Hospice Services

While the United Kingdom continues to depend on transition of children and young people to adult hospice services, there are several challenges associated with the transition experience. Cook et al. (2013) defined this transition as the planned and deliberate movement of children and young people with chronic health conditions from children hospice services to adult-centered hospice services. In addition to concurring with Cook et al. (2013), Kirk & Fraser (2014) state that there is minimal knowledge regarding the transition experiences of children and young people when shifting to adult hospice services.

According to Doug et al. (2009), one of the major transition challenges for this population is fragmentation between child and adult hospice service providers because of the lack of standardized transition programs. Due to fragmentation, children and young people experience numerous challenges in negotiating transition because of poor continuity of care. Kirk & Fraser (2014) concur with Doug et al. (2009) by arguing that current approaches to transition planning are poorly coordinated or non-existent. They also contend that adult hospice services find it difficult to provide necessary support to children and young people during transition because of lack of standardized transition programs and poor continuity of care. Doug et al. (2009) postulates that fragmentation problem is brought by lack of access to suitable comparable adult hospice services for children and young people. In essence, services provided in adult hospice programs are not flexible and suitable for the age and developmental age of children and young people in need of palliative care.

Secondly, children and young people experience lack of emotional and practical support during transition to adult hospice services, which is partly attributable to lack of review and reflection during this process (National Transition Support Team, 2012). In support of this claim, Kirk & Fraser (2014) state that recent surveys have indicated a substantial decrease in support for children and young people during transition to adult hospice services (p.343). This is partly attributable to the progressive conditions of this population. The Care Quality Commission (2014) supports this view on the premise that adult hospice services do not understand or provide for the specific needs of children and young people based on their developmental stage (p.66).

Hughes-Hallett & Gelb (2012) state that transition experiences of children and young people are characterized by difficulties in establishing important relationships with professionals in adult hospice services, which results in less suitable services and poor health outcomes. This view is supported by the National Transition Support Team (2012) on the premise that other people take control of caring for this population without adequate knowledge of their specific needs. Doug et al. (2009) state that children and young people experience difficulties in familiarizing themselves with the adult hospice environment since they prefer hospice settings based on same-age groupings or peer-led models of hospice services. Adult hospices are seemingly ineffective for children and young people since they focus on end-of-life care instead of other conditions that could be affecting young people (Kirk & Fraser, 2014, p.343).

Challenges for Leadership within the Hospice Sector

As evident in the previous review, the challenges facing children and young people during transition to adult hospice services are attributable to challenges experienced by hospice leadership when dealing with the differences between the two age groups. Johnson et al. (2013), state that hospice leadership faces the challenge of the ever changing landscape of children and adult hospice services. These researchers.....

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