Adult Health, Social care and Well-being
A report analyzing the case study of a person with Parkinson’s disease
Adult Health, Social care and Well-being
Table of contents
2. Perspectives on health and illness
2.1 Holistic approach
2.2 Social model of health
3.1 Contribution of theory
3.2 Research and Parkinson’s disease statistics in the UK
3.3 Theory and Practice
6. References ?
This report reviews the case study of 61 year old Theresa who was a widow and recently retired midwife who lives alone in an Irish community and has just been given a diagnosis of Parkinson’s disease (PD). Parkinson’s disease is caused by a loss of nerve cells in part of the brain called the substantia nigra. This leads to a reduction in a chemical called dopamine in the brain. Dopamine plays a vital role in regulating the movement of the body. A reduction in dopamine is responsible for many of the symptoms of Parkinson’s disease (NHS)a.
Theresa is mainly reliant on a wheelchair most of the time. She has four sisters and one daughter but is reluctant to ask her sisters for any help, which leaves her daughter to be her main carer, providing her with meals and helping her to wash and dress. Theresa has withdrawn from social activities which she previously enjoyed and her daughter is concerned her mother may be depressed.
This report looks at two issues for helping health and social care professionals to understand Theresa’s situation. These are:
• How the diagnosis of Parkinson’s disease can be understood with finding and offering useful and available options locally and nationally?
• How can Theresa be supported and helped to understand and make autonomous choices about her care needs to gain a positive outcome?
This report explores whether Theresa’s health care professionals can help Theresa to gain positive outcomes for her needs the medical approaches towards her health care. This report will consider different theories, research and good practice guidelines to make recommendations towards Theresa’s situation.
This report is aimed at local NHS health care specialists for Parkinson’s disease and psychiatrists as well as other key medical professionals around Ireland to help Theresa to understand her situation and manage the situation in her best interests.
2. Perspectives on health and illness
In the context of Health and Illness, peoples’ perception may differ significantly. This is usually influenced by one’s own experiences, cultural, physical and spiritual elements. It is a complicated topic and is viewed by people in different ways and can impact on the decisions they make in their choices and approach when seeking access to health and social care services. In the past, care service providers approached the delivery of care by using a single approach to provide care to individuals (Woodthorpe and Simons,a p27). However, Health and Social Care Services in most recent times is focused on a more integrated approach which takes in a wider view to people’s health and social care needs. This means Theresa is in a good position to choose the kind of care she believes would meet her health and social care needs, using all sources of information provided by the services prior to making that choice.
Health is a state of complete well?being: physical, mental, and emotional. This definition emphasizes the importance of being more than disease free, and recognizes that a healthy body depends upon a healthy environment and a stable mind. Sociology assumes that a functioning society depends upon healthy people and upon controlling illness. In examining social constructs of health and illness, sociologist Talcott Parsons identified what he called “the sick role,” or the social definition of, the behaviour of, and the behaviour toward those whom society defines as ill. Parsons identified four components to the sick role.
The sick person is:
• Not held responsible for being sick.
• Not responsible for normal duties.
• Not supposed to like the role.
• Supposed to seek help to get out of the role.
Theories have helped health care providers to understand the factors that influence a particular experience of health and social care. For a person to learn they have a long term medical condition can be a shock and be very worrying for them. A long term health condition can affect a person psychologically, socially and culturally as well as physically. Depression occurs in about 30%–40% of all patients with Parkinson’s disease (PD), but only about 20% receive treatment, so consequently, many PD patients suffer with reduced quality of life (NCBI).
There are three approaches in health and social care could be used to help understand different approaches to health and illness. A ‘bio-medical’ approach looks to ‘fix’ or ease a diagnosed ‘problem’ of individuals to improve their quality of life but alone, the bio-medical approach presents a limiting way of considering chronic health conditions for which specific causes are often unclear and requires a wider view than just impairment-based treatments. ‘Holism’ aims to extend the bio-medical approach by including lifestyle, environment and other influences on the individual’s health. This impact across the ‘whole person’ indicates the importance of looking at more than a biological approach to treating illness within health and social care. The social model’ looks at psychological health and wellbeing of an individual to live a meaningful quality of life. Factors including age, gender and environment alongside geographical location, social class and local resources also affect a person’s health and quality of life. For Theresa I think the holistic and social models need to be applied to her situation. This will hopefully enable professionals to help her with her Parkinson’s as well as to investigate and treat her depression.
2.1 Holistic approach
Holism’ aims to extend the bio-medical approach by including lifestyle, environment and other influences on the individual’s health. This impact across the ‘whole person’ indicates the importance of looking at more than a biological approach to treating illness within health and social care. This ‘person-centered’ approach to care is guided partly by professionals advising ‘self-care’ and providing access to information and a range of services which encourages empowerment over individual health and wellbeing (Woodthorpe and Simons,b p40). For example, the diagnosis of a debilitating illness may require treatments or operations, but maintaining good health afterwards might require changes to diet and physical fitness. This perspective places equal importance on all aspects of an individual, beyond just that of one individual area of ill health. It may require the need for psychological help in dealing with stress due to changes in employment, relationships and consequences of illness. The combination of mind, body and spirit as a ‘whole’ is considered to be at the essence of ‘holism’.
2.2 Social Model of health
‘The social model’ aims to broaden the bio-medical and holistic views including psychological and social factors, known as psycho-social. Factors including age, gender and environment alongside geographical location, social class and local resources also affect a person’s health and quality of life (Woodthorpe and Simons, p44c). People with Parkinson’s disease are more likely to be socially affected than people without it. Out of 100 people surveyed, roughly 45% of Parkinson’s sufferers had depression, and 59% of those were females aged between 16 and 74 years old (BMJ)a.
3.1 Contribution of Theory
Parkinson’s disease is a progressive, neurological disorder, with no known cure. There are approximately 127,000 people with Parkinson’s disease in the UK, being the second most common neurodegenerative condition in the UK and is set to become increasingly common as life expectancy increases. Numbers are estimated to increase by 28% by 2020 (BMJ)b.
Parkinson’s disease affects movement and activity and becomes less predictable over time. People report that symptoms can change rapidly daily, or weekly, the longer they have had the condition. Slow movement, rigidity and tremor are often present and impact on a person’s ability to be active. There are over 30 ‘non motor’ symptoms associated with Parkinson’s disease including anxiety, depression, fatigue, pain, memory problems and sleep disturbance. As the condition progresses, it becomes more complex and has more impact on daily activities. This complexity can result in increased healthcare needs, but also an increased dependency on social care (BMJ)c, for Theresa, the diagnosis of PD and its debilitation have led to mobility problems. This biological change in health may lead to a bio-medical approach from practitioners who specialize in this area. Theresa’s treatment may be limited only to PD, and may not help with her mental health.
With a ‘holistic’ view of Theresa’s situation a wider outlook of her health and wellbeing would identify why she is withdrawing from social activities. Psychologists have noted that some people faced with disability will separate themselves from ‘normal’ society, and may not view themselves with the wider society (Tilley, et.al p28). They may feel ‘labeled’ and ‘different’, leading to feeling stigmatized. In the 1960s Goffman identified undermining attitudes towards groups of people who experienced social, economic and political inequality. However, recent anti-discrimination laws and disability legislation has had some impact by changing views and attitudes towards disability (Leach, p10-13a).
How Theresa sees herself now, compared with before the illness could be making her feel isolated. Sociologist Talcott Parsons suggested that being ill is controlled by social structures because it affects people’s ability to contribute to society. He suggests that allowing ill-health individuals can forget normal responsibilities and apply the ‘sick role’ as an identity to others while accepting certain conditions (Leach, p13b). For Theresa, the ‘sick role’ may have become her ‘defining’ feature resulting in her unwillingness to engage in socially with family or friends.
The flow chart below shows how this could be impacting Theresa.
(Flow chart created by E. Hood, 2018)
At this time there is no cure for Parkinson’s disease, but treatments are available to help ease the symptoms and maintain quality of life. These treatments include supportive therapies – such as physiotherapy, medication and in some cases surgery (NHS)b.
Physiotherapy could help Theresa to ease stiffness and joint pain with gentle exercise aiming to make moving easier, and improve walking and flexibility (NHS)c. Occupational therapy could help to identify problem areas in everyday life, for example dressing, washing or getting out. Occupational therapists could help to work out solutions, and make sure Theresa’s home is safe (NHS)d. This will encourage her independence for as long as possible and bring back some confidence.
If Theresa is cared for using the holistic and social model together she may feel less isolated and would be seen as a ‘whole’ person. She could receive therapies to help with mobility and her depression and medication for treating the symptoms of the Parkinson’s. Alongside this the social model looks at social aspects, Theresa would have knowledge about how to be more independent meaning she wouldn’t have to rely so much on her daughter with daily care. She would get information from her care supporters for places to go which would enable her to go out and see people. These factors will not make Theresa physically better but, combined they may improve her mental health, reduce her feelings of isolation and begin to resume her confidence.
3.2 Research and Parkinson’s disease statistics in the UK
According to the NHS It’s believed roughly 1 in 500 people are affected by Parkinson’s disease, meaning there are an estimated 127,000 people in the UK with the condition. Most people with Parkinson’s start to develop symptoms when they’re over 50, although around 1 in 20 people with the condition experience symptoms when they’re under the age of 40 (NHS)e.
NICE estimates that the costs of treatment is between £560,000 and £1.6 million per 100,000 people. Significant costs include the onset of motor fluctuations, psychiatric symptoms, and institutional care. Parkinson’s disease is one of the most common reasons behind falls, fractures, and hospital admission, and is a costly illness for NHS (NICE).
The way Parkinson’s affects patients can vary from hour to hour and day to day and the combination of motor and non-motor symptoms can make it difficult to carry out many daily activities meaning patients need to receive drugs on time to give optimal symptom control (Parkinson’s UK).
A Recent study authorized by Parkinson’s UK on the economic cost of Parkinson’s in the UK has shown financially People with Parkinson’s (PwP), their carers and families, have paid over £16,500 per household per year. The annual cost of treatment to the NHS was £2,118 per person and the total annual economic burden added up to £20,123 per PwP household. The recurring financial expenses and reduced income have directly impacted the living and health conditions as well as quality of life of both patients and their informal carers (BMJ).
Parkinson’s UK describe diagnosis of PD as ‘very stressful and upsetting, which can have an impact on every aspect of life causing sufferers to give up activities which may be important to them, and may lead to depression, almost half of Parkinson’s disease patients have depression linked to isolation (Parkinson’s UK). The chart below shows the percentage of Parkinson’s patients in the UK who also suffer with depression.
(Chart created by E. Hood, 2018)
The National Institute for Health and Clinical Excellence (NICE) advises quick referral of suspected PD and regular reviews every 6 -12 weeks, access to specialist nursing, physiotherapy and speech therapy along with palliative care and the opportunity for individuals and their carers to discuss end-of-life issues with professionals. This could be important for Theresa and her daughter with a ‘holistic’ approach to improving her wellbeing; she could be referred by her GP to the PD nurse and to specialists for psychological help with her depression.
3.3 Theory and Practice
Theresa refusing help from family and their wanting to assist her presents an ethical dilemma. One principle developed by Beauchamp and Childress is that of ‘autonomy’ and the need to respect the decision-making capacities of the autonomous person (Walsh and Woodthorpe,a p39). This states that “at a minimum, individuals are free from interference from others and limitations like poor understanding preventing meaningful choice. The individual can act freely in accordance with a self-chosen plan” (Walsh and Woodthorpe,b p39). However, Theresa’s ability to make decisions maybe impaired because of her low mood. With holism a ‘person-centered’ approach would enable Theresa to use the theory of ‘autonomy’ with her at the centre of her care, listening to her views on available services, treating her with respect and focusing on her abilities, with honest communication while relating to her as an individual and supporting her identity (Tilley,a p51).
Shared decision making (SDM) within healthcare is seen as a major benefit to help service-user ’empowerment’ in deciding personal care. This ‘personalized’ approach assumes that Theresa can be involved in decisions which affect her needs. SDM can be described as ‘the incorporation and employment of service-user’s beliefs and preferences when making decisions about their own care’ to ensure the best outcomes (Turner, et.al p35). This would depend on relevant information being available to her, assuming she has the capacity to think and act rationally in decision-making. The deficiency led model that looks at what’s wrong with individuals is so fixed, that many service-users views of SDM is undermined (Coulson 2007) and critics argue that limited resources means that practitioners may need to challenge or modify a service-user’s choices resulting in feelings of ‘disempowerment’ (Tilley,b p37).
Involvement and participation are important for empowering individuals along with choice and knowledge (MacKian, p14). One recent aspect of ‘personalization’ is the introduction of individual and personal budgets which aim to give people more control over services they are entitled to. If adopted, Theresa would be able to use her autonomy to choose her support services. This move towards user empowerment assumes that people can and want to make their own choices about their care, as long as they have the information available to enable choice and control. For Theresa, the choices involved with participation and personalization of her care to empower her may require help from family or an advocate. Advocacy helps individuals to achieve choice by removing obstacles, accessing relevant information and justice and aims to make service-users to feel powerful, secure and more able to join in with society. The appointment of an advocate could support Theresa in decision-making to help her understand her choices and to achieve a positive outcome (Tilley et.al p48).
One of the issues in this report depends on how Theresa’s treatment is identified regarding the best way to offer choices and options about her care and how she can be supported to make independent decisions.
Theresa’s first point of contact regarding her PD is her doctor, who may follow a pathway of treatment based on a ‘bio-medical’ approach gained from training and practice guidelines. A bio-medical approach could be viewed as a typical medical solution to treatment. By adopting a ‘holistic’ approach Theresa’s GP could refer her to key support services like the local PD specialist, and local psychiatrist but her right to autonomy means she may not accept help at this stage. A ‘holistic’ approach may identify issues affecting Theresa’s well-being; this approach would identify the psychological issues highlighted by her daughter. Looking at the statistics regarding depression around Parkinson’s disease patients it may be ideal for someone to assess Theresa’s metal health and to treat that too. Changed identity due to this sudden life-changing event may have contributed to Theresa’s detachment, so one solution could be her agreeing to an advocate who can listen to her concerns, and explain the choices and options available regarding care, treatment, and relevant medication. This could help ’empower’ Theresa in decision-making and keep focus on a ‘person-centered approach’ to her health needs.
Overall, a ‘holistic’ approach towards Theresa’s treatment and care offers the best opportunity for a positive outcome.
This report recommends that:
• GPs should look for a ‘holistic’ approach to treatment of people with PD and Psychological support should be offered to deal with life-changing health situations.
• Issues of stigma and identity need explaining and to be understood by individuals and any evident ethical dilemmas, advocacy should be offered to service-users.
• Service-user choices should always be respected and where resources are available should be offered to help make use of national and local groups and organizations.
• Professionals should always consider individuals abilities, wants and needs ensuring ‘person-centered’ care.
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