Transition from paediatric to adult palliative care: more than a physical change
| العنوان: | Transition from paediatric to adult palliative care: more than a physical change |
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| المؤلفون: | Brian Nyatanga |
| المصدر: | British Journal of Community Nursing. 18:466-466 |
| بيانات النشر: | Mark Allen Group, 2013. |
| سنة النشر: | 2013 |
| مصطلحات موضوعية: | Community and Home Care, Service (business), Transition to Adult Care, Palliative care, Adolescent, business.industry, media_common.quotation_subject, Palliative Care, Buddy system, General Medicine, Service provider, Community Health Nursing, Patient Care Planning, United Kingdom, Etiquette, Nursing, restrict, Neoplasms, Premise, Humans, Medicine, Young adult, business, media_common |
| الوصف: | The challenges faced by young people with cancer and other palliative care needs have been well documented by many, including the charity ‘Together for Short Lives’ (www.togetherforshortlives.org.uk). These young people also have the added challenge of moving from paediatric to adult care as they become young adults. A number of illnesses such as cystic fibrosis that were once suffered almost solely in childhood are now experienced into adulthood as treatments and care continue to improve. Similarly, cancer and other life-limiting diseases are following the same trajectory, ending up in adulthood. Although the philosophy governing the practice of palliative care is the same, there are differences in approaches between paediatric and adult care. Some paediatric services such as hospices are now making conscious decisions to restrict their services to children up to 18 years old. This is due to a lack of resources to care for young adults as paediatric services do not receive funding for adult palliative care. The lack of specialist knowledge regarding adult palliative care needs and treatment for pain and symptom control supports this decision to some extent. Furthermore, the paediatric setting may no longer be appropriate for the young adult, so alternative (adult) settings must be found for them. The idea of transition has different meanings and interpretations and it is not just about physical changes made from one service (paediatric) to another (adult). It involves multiple complex and concurrent changes (Kirk, 2001) with professionals handing some of the care to parents. Children move from being dependent on others to being independent; move from being a minor to being treated as an adult; and move from parental to self-care, making the transition from having someone make decisions for them to being expected to make their own decisions. Adult services tend to function on the premise of negotiated decision-making and, therefore, the young adult must get used to holding dialogue with health-care professionals, which may challenge their communication skills. Community nurses may have to develop new skills to care and support young adults in the home. When young adults move from paediatric to adult care, they are ‘forced’ to adapt to a new world of adulthood, to form new relationships and to adhere to the social etiquette of adult life, which can pose a real challenge while trying to adjust to illness. Some young adults find themselves in different settings, such as community care and special homes. It is important that there is a clear strategy in place for this transition to be successful for the young adult. However, evidence from a systematic research study by Doug et al (2011) concluded that there are no clearly identified or agreed programmes, guidelines or protocols in place to aid transition from paediatric to adult palliative care services. This does not mean transitions are not occurring, but perhaps that they are occurring in a more haphazard way, which can be detrimental to the young adult. Doug et al (2011) found that most of the studies they examined focused on disease-specific transition, such as cystic fibrosis and cancer, and concluded that there was poor continuity of care between child and adult service providers. This ‘transition gap’ is of major concern and needs to be addressed: The idea of having a transition team in each child setting can help prepare those approaching 18 years of age for discharge in the following ways: w To help and guide the child on what it means to be independent and the responsibilities attached to it, some of which can be executed through decision-making and one’s behaviour. w To prepare the child as they approach 18 to appreciate the social etiquette of adulthood and to learn how to socialise as an adult w To enable a buddy system to facilitate a smooth transition between paediatric and adult services w To smooth the funding transition and ensure that it follows the child when it becomes a young adult. Most adult hospices might see this as important if they are to support and care for the young adult. A general observation to note is that change from paediatric to adult health care is hard for ‘normal’ young people. Young people may not always register with a GP, and as a result may drop off the health-care ‘radar’ after they leave home. The next contact with health-care professionals might be in an emergency. It is important that community nurses are extra aware of this. The transition gap is real and needs everyone in palliative care including the community to view it as broader than a physical move by a child from paediatric to adult care. We must conceptualise it as a total holistic experience that is part of a psychological process encountered by the child as they ‘struggle’ to leave childhood behind and assume elements of adulthood accompanied by a life-threatening illness. BJCN |
| تدمد: | 2052-2215 1462-4753 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0da771d212a92330b0d62c5faa7097c0Test https://doi.org/10.12968/bjcn.2013.18.9.466Test |
| رقم الانضمام: | edsair.doi.dedup.....0da771d212a92330b0d62c5faa7097c0 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 20522215 14624753 |
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