“Chronic Health Conditions” is a term that includes disability and diseased conditions that people may “live with” for an extended period of time (more than 6 months). Chronic health conditions can begin gradually and are mainly progressive which require long-term care and timely monitoring by the healthcare professionals (Coulter et al., 2015). The following paper aims to analyse one such chronic health condition, Parkinson’s disease, a neurodegerative dis-order with progressive impairment in the cognitive and motor functioning. Parkinson’s disease (PD) hampers the health-related quality of life (HRQoL) of both the diseased individual and their family of carers (Nandipati & Litvan, 2016). The paper mainly attempts to explain the self-management of PD. In explaining this, the paper will throw brief light on the causes of the disease development, pathophysiology of the disease and impact of the disease on the disease on the HRQoL of the individuals and the family of carers. The paper will also analyse the health promotion strategies towards the self-management of Parkinson’s and importance of culturally safe care towards the promotion of the disease empowerment.
PD is a condition under which some parts of the brain become progressively damaged during the course of time. Damage of the brain is mainly attributed to the damage of the nerves leading to the development of neurogenerative disease, Parkinson’s. The neuro-degeneration is associated with involuntary sharing of different parts of the body like neck, hands and feet leading to the development of tremor, slow movement of the body muscles or muscle stiffness (Bonifati, 2014). The damage of the nerves cells is mainly facilitated by the loss of function of the nerve cells in the substantia nigra of the brain. This loss of nerve cells is a slow process and thus the symptoms of Parkinson’s disease only start to develop when 80% of the nerve cells in the substantia nigra region of the brain have been lost. It is still not known why the loss of nerve cells is associated with the development of PD. At present research highlights the combination of both genetic and environmental factors are responsible for the diseased conditions. The main gene associated with the disease development is the loss of function of the Parkin gene. This is due to this genetic linkage of the Parkinson’s disease makes in inherited and might run in families (Bonifati, 2014). The main environmental factors leading to the development of the disease include exposure from pesticides, herbicides, industrial pollution. However, the evidence associated with the environmental factors underlying PD is inconclusive (Nandipati & Litvan, 2016). Other causes include prevalence of progressive brain conditions, drug-induced Parkinsonism and cerebrovascular disease (Bonifati, 2014).
The main pathophysiology of the PD is guided by the damage in the nerve cells of the brain. Loss of function of the nerve cells in the brain or damage of the nerve cells causes reduction in the secretion of dopamine mainly in the basal ganglia. This lack of secretion of dopamine which acts as a neuro-transmitter leads to altered discharge rates, increase in the rate of incidence of burst firing, altered sensorimotor processing and disruption in the equilibrium of the oscillatory activity and interneuronal synchrony. These malfunctions lead to disruption in the synchronization between different parts of the brain like ganglia, thalamus and cortex leading defects in neuro-transmission and ultimately development of Parkinsonism (Bastide et al., 2015).
According to Parkinson’s Australia (2018) people living with PD require re-adjustment as the progress of disease is slow. Depending of the degree or neuronal impairment, the daily living activities (DLAs) like driving, bathing, having food, getting dressed and walking become more challenging over-time. In relation to this, Narme et al. (2013) stated that individual’s experience with PD is not only limited too physical discomfort brought during the course of disease development but also cause significant psychological distress. Narme et al. (2013) further highlighted that increased dependency on a care in order to accomplish DLAs, generates a sense of depression and low-self-esteem. An individual start feeling that he or she might be the burden to others and a strain in relationship. In order to cope up with this the roles with the family and the community or team-mates at work is required to be re-defined. Providing care to the individual with PD generates huge mental and physical exhaustion to the group of direct carers which increases health burden and disruption in the HRQoL of the family members (Carod-Artal, Mesquita, Ziomkowski & Martinez-Martin, 2013). Carod-Artal, Mesquita, Ziomkowski and Martinez-Martin, (2013) highlighted that patient’s psychiatric and sleep disorders and the mood of the carer is significantly affected decreasing HRQoL.
The overall concept of health-promotion must be facilitated under the framework of the Ottawa Charter for Health Promotion of WHO. This framework of health promotion has 5 different parameters. First parameter includes building public health policy (PHP). According to WHO (1986) PHP requires identification of obstacles and subsequent adoption of the health promotion policies in order to overcome those obstacles. The PHP for Parkinson’s disease in Australia is mostly aimed towards identification of the disease specific age groups and increase in the awareness of the disease condition and its impact on the aged care and the general community members. The government of Australia is promotes development of person centred care for people with PD and that too in a cost effective manner (Parkinson’s Australia, 2008). The second domain of the Ottawa Charter is creating supportive environment. Creating supportive environment for people with PD mainly focus on the older adults as they are the main victims of PD. The creation of supportive environment can be done via the making non-skid floors and minimal use of furniture in interior décor as this will help to minimize accidental fall due to motor difficulties among individuals with PD. Other approaches include, proper lightening inside the roo and use of blinds to minimize glares. Wide walking path and easy access of the movement of wheelchair throughout the room and removal of unwanted electrical wires and computer cords to preventing tripping (Struckmeyer & Pickens, 2016). Third domain of Ottawa Charter strengthens the overall community access. According to Lindholm, Hagell, Hansson and Nilsson (2014), increasing community access can be done via the increase in the public awareness about the PD. Increase in public awareness will help to create a sustainable environment for the people with PD where they will face less stigmatization, less fear and social exclusion. The fourth domain of Ottawa Charter includes development of personal skills. According to van der Eijk, Nijhuis, Faber and Bloem (2013), development of personal skills help in the process of self-management of the disease. This development can be done through disease education about PD. According to Coastes (2017), development of personal skill can be done via developing coping skills, goal-setting for specific and moderately challenging behaviour difficulty in walking, eye sight problem and poor hand eye co-ordination. Here coping skills will mostly employ use of wheel chair or walker in order to facilitate proper movement and thus enabling the accomplished of DLAs like using bathroom or taking meal at dining table. This sense of independence will promote the degree of disease self-management. Other self-management skills can be promoted via self-monitoring (monitoring of vital signs via the use of pulse oxymtery), self-reward, arrangement of social support (coming from family members) and modification of the surrounding environment in order to maximise the self-management success (Coates, 2017). The fifth domain of Ottawa Charter of WHO includes re-orientation of healthcare services. This re-orientation of the healthcare service can be done via promotion of culturally competent care for PD. However, Talbot and Verrinder (2018) highlighted that when health promotion and health education activities are focused on the individuals and is attempted to influence their behaviour, might lead to the generation of victim creation especially among the Aboriginals and the Torres Strait Islanders. They are mainly victims of the healthcare system as the system holds them responsible for their health-related conditions and thus blaming them for certain issues which are in most of the cases outside the victim’s control. According to Talbot and Verrinder (2018), local cultural values and ethnic gender stereotypes prevails on the healthcare practitioner and this is expressed via their facial expression and thereby generate a negative feedback among the service users. Talbot and Verrinder (2018) recommended that victim blaming is a subtle process which is wrapped under kindness and concern and it is the duty of the healthcare professionals to recognise the health determinants that is responsible for the that particular health-related behaviours without solely blaming them. Moreover, it also the duty of the healthcare professionals to re-orient the healthcare service for PD in a culturally competent way and this can be done via effective communication skills and proper health literacy about the cultural and spiritual believes of any indigenous people. Effective communication will help to develop person-centred care plan which is culturally competent and withholds the spiritual and ethical values of the indigenous groups with PD or culturally and linguistically diverse group with PD (van der Marck et al., 2013).
In order to provide empowerment to the individuals with PD, it is the duty of the family members or the direct care givers to deliver unrelenting support both mentally and physically. This support will help individuals with PD to refocus and learn the ways of managing new illness-related, task-directed and affective roles in day-to-day life. This will help to increase the sense of integrity and self-esteem of the patient with PD and this in turn will help the family’s overall adjustment to illness. Increase the sense of empowerment will help to promote self-management of the disease (Chiauzzi et al., 2016). According to Chiauzzi et al. (2016) self-management is defined as an individual’s ability to manage symptoms and handling the consequences arising out of change in physical and psychosocial lifestyle. This in turn will help to promote satisfactory life via promoting necessary cognitive, behavioural and emotional responses. van Hooft et al. (2015) highlighted in order to promote empowerment and thereby helping to facilitate self-management of PD, it is the duty of the healthcare professionals to prefer patients to abide by their choices instead to making choices on their behalf. Suppose if a patient with PD is comfortable in moving through a wheelchair and not by walker, it is the duty of the healthcare professionals to first abide by his or her will and then via developing therapeutic relationship, convince him or her that why use of walker is more beneficial for his physical health. Via doing this respect to his or her will or autonomy is given while making him or her realise the importance of walker in therapy plan will increase the sense of empowerment. According to Birren et al. (2013) development of therapeutic relationship increases the patient involvement in the care and thereby by helping to provide health literacy. Promotion of health literacy increases the problem solving and decision making skills of the patients which in turn increases the sense of empowerment.
World Health Organization (2005) highlighted the nurses also play an important role in promoting self-management of chronic neurodegenerative disease like Parkinson. The main role of the nurse in promote of self-management of PD mainly includes devising patient-centred care, partnering, overall quality improvement of the therapy via proper use of the information and communication technology (ICT) and taking a public health perspective approach. ICT in PD sell-management can be done via use of tele-health service and this will reduce the chances of unwater hospital visit and self-management of PD.
Conclusion
Thus from the above discussion, it can be concluded that progressive neurodegenerative disease, Parkinson affects the HRQoL of both the individual’s with PD and their family members. In order improve overall HRQoL, it is the duty of the healthcare professionals to promote self-management of the disease. The self-management of the disease can be done via the developing of person coping skills, framing self-management goals, modifications of the external environment and support from the community and family members. Moreover, the nursing professionals must also come forward and work on person-centred care plan and thereby helping in quality improvement leading to cultural competiveness and empowerment of the service uses.
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