Patient‐centred care has been an evolving concept, originally depicted by Edith Balint in 1969 as “understanding the patient as a unique human being. Since then, there have been many other conceptualizations of patient‐centred care. (Simces Z 2003) Patient‐centred care has been described through an array of alternative and more commonly adopted terms, including: patient (and family)–centred care, relationship‐centred care, personalized care and user/client‐centred care. Various jurisdictions, organizations and health‐care systems utilize different terms and concepts. For instance, in the United States, the concept is usually linked to a “patient‐centred care medical model,” while in the United Kingdom, it is associated with primary care, and in Scotland, PCC is known as “mutuality.” The concept of Person-Centred Care (PCC) is used to describe a certain model for the role of the patient within the healthcare system and the way in which care is provided to the patient (Han CJ 2015). Globally, there is continued advocacy for person-centred, individualised care, with the contemporary term for PCC being frequently presented in healthcare discourse, and frequently associated with the safety and quality of healthcare service provision. Indeed, partnering with consumers within a person-centred framework is now a fundamental requirement for Australian healthcare services, meaning that they cannot achieve accreditation without demonstration of PCC. Hence, PCC is now seen in healthcare service strategy and models of care, designed to support the voice of the patient and the role of the healthcare service in engaging with patients Person-centred care is a way of thinking and doing things that sees the people using
health and social services as equal partners in planning, developing and monitoring care to make sure it meets their needs. This means putting people and their families at the centre of decisions and seeing them as experts, working alongside professionals to get the best outcome.
In the present case Abdul has a profound and multiple disabilities (estimated IQ below 20). People with profound learning and multiple disabilities may have considerable difficulty communicating and characteristically have very limited understanding. On most aspects of his care he does not demonstrate capacity. He enjoys quiet, calm environments and when in unfamiliar, over-stimulating / new environments can become very distressed and will bite himself if very upset. More recently his mood and behaviour have been showing increasing distress. Currently he is presenting as distressed, crying, and frightened. Effective person‐centred care is at the heart of fundamental nursing care, but it is deemed to be challenging in acute health care as there is a strong biomedical focus and most nurses are not trained in person‐centred fundamental care delivery. Abdul is having multiple problems. One major problem is epilepsy manifested by tonic-clonic seizures. Within the last 20 weeks he has had two episodes of status epilepticus. There is no known triggering factor. He is prescribed sodium valproate 1.25 grams bd for the seizures. Person-centred care involves knowledge of the individual as whole person, involving them – and where appropriate their family and friends – in helping to assess their own needs and plan their own care. The origins of person-centred care are in humanistic psychotherapy. Carl Rogers (1951) suggested we develop a view of ourselves in childhood based on our interactions with important others. If we are loved, valued and respected, we feel worthy of love, value and respect. In person-centred care, caring is central to nursing practice, and nurses’ relationships with the service user are fundamental to that individual’s experiences of care. The service user’s role is one of partnership, rather than a passive receiver of care. A person-centred relationship promotes self-esteem (positive self-regard) and self-efficacy (a feeling of being able to achieve one’s goals). Person-centred planning is an approach that tries to include not just specialist learning disability services, but also servi
In nursing homes, care plans provide a guide for fundamental aspects of residents’ everyday lives, such as eating, sleeping, bathing, and dressing. In the United States, care plans are informed, in part, by the minimum data set (MDS), which is used to assess all residents on a regularly scheduled basis (Dellefield & Corazzini, 2015). Care plans identify residents’ personal and healthcare needs, the type of staff that should provide services, the frequency of services, equipment and supply needs, dietary needs and food preferences and health and personal goals. Care plans can be used by residents and their families to help structure their daily lives, by staff to plan their daily work, and by management to create operational plans (e.g., staffing protocols) that align with residents’ care plans. For long‐term residents, care plans can shape the quality of their lives for extended periods of time. Abdul was admitted through the CAMHS team. He and his family were being supported at home for his changing emotional needs. Concern was raised on his deteriorating physical health, its impact on his behaviour. The referral was made following an appointment between Abdul and the GP, supported by the CAMHS team. Abdul was presenting as struggling increasingly to breathe. A critical analysis suggests that vulnerable groups such as those with intellectual
needs, as well as individual and specific informational needs (Heslop et al. 2013). The same condition is noticed in Abdul. Due to multiple medical problems are associated with his disabilities it is not possible to manage him at home and he was admitted in the hospital for person centred care. As a result, he requires multi-professional involvement, including access to specialist liaison nurses due to the frequent number of transitions across general hospital departments and services and the risks associated with poor communication and information sharing (Bradbury-Jones et al. 2013, Department of Health 2008, Heslop et al. 2013). Providing person-centred care can potentially act as a buffer by preventing poor care for patients with intellectual disabilities. By facilitating better resolution when these points do occur, the liaison nurses are in a prime position to achieve this as they have a presence across all areas of the general hospital environment (Brown et al. 2012). The absence of the additional support and expertise provided by the liaison nurses through the complexities of the acute care pathways can lead to confusion, manifesting as patient and carer dissatisfaction, anxiety and broken trust, unclear roles and decision-making challenges, risk and muddled care pathways which in turn result in care that lacks compassion and is not person-centred.
needs, as well as individual and specific informational needs (Heslop et al. 2013). The same condition is noticed in Abdul. Due to multiple medical problems are associated with his disabilities it is not possible to manage him at home and he was admitted in the hospital for person centred care. As a result, he requires multi-professional involvement, including access to specialist liaison nurses due to the frequent number of transitions across general hospital departments and services and the risks associated with poor communication and information sharing (Bradbury-Jones et al. 2013, Department of Health 2008, Heslop et al. 2013). Providing person-centred care can potentially act as a buffer by preventing poor care for patients with intellectual disabilities. By facilitating better resolution when these points do occur, the liaison nurses are in a prime position to achieve this as they have a presence across all areas of the general hospital environment (Brown et al. 2012). The absence of the additional support and expertise provided by the liaison nurses through the complexities of the acute care pathways can lead to confusion, manifesting as patient and carer dissatisfaction, anxiety and broken trust, unclear roles and decision-making challenges, risk and muddled care pathways which in turn result in care that lacks compassion and is not person-centred.
The Model of Person-centred Care for Vulnerable Groups identifies the main components of care as well as key challenges which need to be overcome to ensure that individual patient care is both person-centred thereby meeting the individual needs of patients with intellectual disabilities, necessary given their distinct needs within the acute care environment. The model highlights that vulnerable groups such as those with intellectual disabilities present with a number of challenges, including high comorbidity and complex needs, as well as individual and specific informational needs. As a consequence of their needs, they require multi-professional involvement, due to the frequent number of transitions between and across health and social care services and the risk of potential harm associated with poor communication and lack of information sharing which has been shown to contribute to their premature and avoidable deaths (Heslop et al., 2013) The contributions to care and support made by the liaison nurses brings in to the acute care environment access to additional
expertise and knowledge that facilitates and enables person centred care that can potentially act as a buffer by preventing poor care for people with intellectual disabilities and by facilitating better resolution when these points occur (Brown et al., 2012; Bradbury-Jones et al., 2013). The absence of person-centred care to provide the additional support through the complexities of the acute care pathways can lead to confusion, manifesting in patient and carer dissatisfaction, anxiety and broken trust, unclear roles and decision making challenges, risk and muddled care pathways. By drawing out the themes that can contribute to poor and ineffective care from the perspectives of people with intellectual disabilities, their families and carers and the expertise of the liaison nurses, the model presents a new conceptualisation of how the needs of this population can be met in a way that promotes patient safety and person-centred care. To our knowledge these links have never been drawn before in such a clinically meaningful way in the literature. Care for Abdul must involve his family as it will have impacts on all family members such as influencing their food choices and the timing of family meals. Children are not a homogenous group, and children and young people, such as those with disabilities, those in out-of-home care, those from culturally and linguistically diverse backgrounds and refugees require additional services to address their specific needs (Children’s Hospitals Australasia 2010: 6).Children with complex needs are a broad group of children with very diverse needs, including those children requiring long-term ventilator support, children needing assisted enteral or parenteral nutrition, children requiring administration of intravenous medication, children with mobility or sensory impairment, children with behavioural needs and children with life limiting or life threatening conditions. Increasing survival rates for children with
complex conditions and for those born prematurely means that the numbers of children in this group is growing. Children with complex care needs require increased health services beyond those generally required by healthy children. In case of Abdul care planning is to be taken in such a way that will provide him a calm environment. At stage 1, it is important to identify his need to support him and to put their person-centred plan together. All actions undertaken should facilitate the person and their circle of support to engage as fully as possible with the process from the outset. Person-centred plans are usually developed using either MAPS, PATH or Essential Lifestyle Planning. Essential Lifestyle Planning is probably the most flexible approach for Abdul. The plan is designed depending on the following question
What do Abdul like and admire about you? Who are the important people in his life? What is important to him – now and in the future? What is working for him now? What is not working so well? What actions need to happen to achieve his dreams and aspirations? Who will do what to make sure those things happen? This is evident that Abdul with learning disabilities have poorer health than the rest of the population and also find it harder to access healthcare services. In addition, his experience of healthcare is poor and characterised by problems that undermine his autonomy, privacy and dignity. He is assessed for his capacity over the specific decisions that he need to take, particularly in respect of his accommodation, care and support needs, and medical matters. Where the assessment shows that he lacks the mental capacity, best interest decision-making will follow in line with the Mental Capacity Act 2005 Code of Practice. The health care action plan should include
information about how best the person can access services, taking into account communication difficulties and support needs. It should make use of devices that ease access such as health care passports. Abdul was admitted to hospital for breathing problem and spent two days in intensive care for initial stabilisation. He was then transferred to the children’s ward for further care and education. He spent a total of six days in hospital. The time Abdul was in intensive care was a very stressful time for the family. Because of his young age, Addul will be fully reliant on his parents for the monitoring and management of his disabilities and multiple health problem associated with it. His parents are taught the skills that are needed to take care of him after he will go home. It is very important to understand that children and young people experience illness, injury and disability in a different way from adults and their health care needs are therefore quite different to those of adults. Further, children’s and young people’s developmental immaturity leads to certain vulnerabilities. Their vulnerability is not an inherent consequence of childhood or adolescence as such, but a result of adult-centric social structures and services that children and young people cannot access as easily as adults. In addition, childhood and adolescence are characterised by rapid physical, cognitive, developmental, social and experiential changes. Children’s and young people’s dependence on adults are naturally on a continuum of dependence to growing independence – although this latter point may not necessarily be the case for children with long-term complex conditions (Children’s Hospitals Australasia 2010). Care of children and young people also involve unique considerations in terms of communication, consent (or assent) and confidentiality (Ford et al. 2007)
The approach to delivering care for service users with learning disabilities should maximise independence and autonomy, and be based on the concepts of respect for human rights and person-centred care provision. Service users with learning disabilities should be treated with respect as individuals and have the same opportunities as other people to lead full and active lives. Children and young people experience health care services in many different settings, such as in their homes, their community and in hospital settings. While much of the literature relates to the care of children in hospital, it must be acknowledged that health care for children largely takes place outside of hospital wards and clinics. Caring for children with complex needs within the home, for example, poses different and sometimes quite complex issues about how health care professionals work in family centred ways.
A further important assumption for nursing children and young people is that
nurses who provide this care need to have well-developed skills to recognise the
particular health, psychological, emotional, developmental, communication and cultural needs of each child and young person (Hill et al. 2011: 80). children’s admission to hospital should be avoided wherever possible, because of the negative impact’s hospitalisation has on children emotionally, psychologically and developmentally, as well as the potential physical risks to them. When a child’s admission to hospital is necessary, admission should be for as short a time as possible. Abdul condition became serious and admitted to hospital. But actual goal can be achieved if proper care is taken at home taking the guidance of skilled nurse. Improvements in technology and care mean that significant numbers of children
with chronic conditions survive to adulthood, and transitioning from paediatric to
mainstream adult services are an important milestone in the life of the young person.
The transition from child/family-centred health care services to adult-oriented health
services can present a challenge for young people and their families as well as for
health professionals who provide care to them. Health care services need to
be designed around and responsive to the needs of children and young people, and
one way of moving closer to this is to see health care services through their eyes
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