Ataxia Telangiectasia (A-T) is primary immune-deficiency disorder that hampers numerous organs in the body. A-T is characterised via several neurological problems mainly manifested as abnormality in maintaining body balance, frequent sinus, respiratory problems and dilation of the blood vessels surrounding the eyes (Gatti and Painter 2013). From the prelude discussed above, Sherry has no significant lifestyle factor that leads to the development of the disease (pre-trajectory) however; there must be certain underlying genetic factors which are not highlighted in the prelude. The trajectory onset in case of Sherry includes body balance problems, misaligned gait, vision difficulties and poor or-ordination. Under this trajectory onset, her condition is unstable as she is unable for perform her daily living activities and this is hampering her quality of life both in personal and professional domains. Therefore the goal for the proper management of the disease and thereby improving the quality of life of Sherry will mainly involve proper management of the her symptoms and thereby helping her to gradually enter into stable state.
The following assignment will help to elucidate the best suited strategies that will be helpful in bringing Sherry back to stable life and the entire care plan with be drafted through the perspective of primary care nurse. In discussing the care plan steps for the promotion the self-management of disease, the assignment will take help of the socio-ecological framework of health.
The socio-ecological framework
According to O’donoghue et al. (2016), socioecological framework is a strategy undertaken to promote optimal care delivery or care co-ordination the patients.
According to the prelude, Sherry loves to perform daily physical activities. According to Tweedy et al. (2017), people who are suffering from ataxia often reduces the rate of the exercise dur to decrease in their body balance, misaligned gait, vision difficulties and poor co-ordination in the other parts of the body. However, this decrease in physical activity further increases the complications of the disease as might be the case with Sherry (Tweedy et al. 2017). So Sherry must be encourage to perform mild to moderate physical activity under the controlled supervision of an expert physical trainer. Tweedy et al. (2017) is of the opinion that exercise helps in the improvement of the muscle strength of the people suffering from ataxia. Keller and Bastian (2014) highlighted in the research that a home balanced exercise program helps in improvement of the body balance of the people with cerebellar ataxia. They conducted a 6-week individualized home-based balance exercise program and the subsequent neurological assessment revealed improvement in the walking speed irrespective of age, reduction in ataxia severity along with improvement in the locomotor performance. Keller and Bastian (2014) stated that the exercise program must be designed to provide a notable challenge to the body balance to the affected person. Sherry’s mother has high literacy so she must be encouraged via changing her beliefs in ataxia to provide active support to her daughter towards effective recovery. According to Heijmans et al. (2015), communicative and critical health literacy plays an important role in successful management of the chronic diseases like ataxia. However, rate of health literacy its effect of disease outcome varies with socio-demography and disease characteristics.
The close interpersonal relationship
According to Miller and DiMatteo (2013), social support coming from the family members, friends, social networks and colleagues provides the patients with practical help and thus helping to buffer the stress of living with illness. Miller and DiMatteo (2013) further opined that emotional and practical support received from family members and friends cast a positive influence over the global measures of the disease management in patients. In case of Sherry, her mother is the best person to provide both emotional and practical support other domain of care givers in her social framework includes her colleagues. Since Sherry is a trained registered nurse, her colleagues will be the best persons to provide emotional and practical support. According to Arber et al. (2013), building helpful relationships, safe places and comfort zones help to improve the overall disease outcome. Apart from the family of cares, the emotional and practical support also comes from cultural groups and other social networks. Queensland Government (2017) has an active service of foster carers from all walks of life who are trained in providing emotional and mental strength to the people suffering from chronic and thereby helping them to recover. The Government of Queensland also provide active community support in the domain of crisis care and community recovery which might prove to be helpful for Sherry.
Sherry’s lack of active participation in the exercise and a sense of uncertainty in sherry’s mother in spite of being a social support worker are mainly occurring as a result of lack of proper usage of the organisation support available in Queensland. According to Movement Disorder Society of Australia (2012), there are numerous non-profit organisations who work effectively and efficiently in order serve the people in Queensland. In case of Sherry, the main organisational support must come from her co-employees along with movement disorders support group associations. These organisation share stories of other affected individuals thereby helping them to gain emotional support and mental sympathy. They also keep a tract of the latest researches undertaken in the domain of neurobiological abnormalities and movement disorders which help them to develop advanced strategy to improve the quality of life of the people suffering from movement disorders (Movement Disorder Society of Australia 2012). According to Taylor et al. (2014), organisational support helps to recognise the pre-existing knowledge and beliefs of the individuals about their long-term neurological condition and thereby helping to generate provision for bespoke disease education. Organisational support also helps in framing of strategies to support adherence of treatment along with support for daily living activities. In case of Sherry, it will be extremely helpful as her movement disorders are hampering her routine activities at home and work. Organisation also provides disease specific training to promote effective self-management of clinical tasks (Taylor et al. 2014).
Community network/community support
Community care will also be helpful for Sherry. According to Mitchell et al. (2015), community care plan supported by the community nurse and other community support workers which include both formal and informal caregivers are useful in reducing the severity of the patients with neurological complications. Community support provides emotional support (informal care givers) and other assistance from formal care givers of multidisciplinary team like physiotherapy, occupational therapy, personal support workers (bathing and walking) and speech language pathologist (in case of voice impairment). According to Chinman et al. (2014), peer support service help to achieve notable outcomes and thereby helping to improve the overall quality of life of the patients of neurological complications, suffering from complications like vision problems, vision difficulties, body balance problems and misaligned gait. There are numerous community services available on Australia Queensland that provide exercise and fall prevention program for people with movement disorder and thereby helping them to improve balance (Australian & New Zealand Falls Prevention Society 2017). In case of Sherry, the community support must also come in the form of counselling in order to cope up with her vision problem. According to Senra et al. (2015), partial to complete loss in vision have negative effects on the quality of life and mental health of people and proper counselling help to overcome some problems.
Equipment and services
Special equipment and services in order to improve the quality of life of Sherry thereby providing help her with self-management strategies will be best procured by an occupational therapists (OT). According to Cheng, Cheng and Ju (2013), it is the role of an OT to work directly with the patients either in individual or in groups. OT also helps in modification of the surrounding environment to accommodate limitations of patients along with presenting therapeutic challenges. In case of Sherry, the best tools that can be used to modify her surrounding environment include use of walker. A walker will help to prevent the chances of accidental falls. Other equipments include wheel fitted chairs to assist her towards bathroom and a support stand to assist her lifting herself the bath tub. Other ongoing services that must be used to monitor health status include muscle strength and amount of vision loss and co-ordination between the gross motor skills (Cheng, Cheng and Ju 2013).
Thus from the above discussion, it can be concluded that Sherry is an urgent need for physical and mental support and this support will come from the both her family members, colleagues and community level nurse. Their joint assistance to Sherry will help to improve her knowledge and information in the domain of disease and thereby helping her to frame her own self-management plan. Moreover, community support will also help her to assist in daily living activities and thereby helping to improve her quality of life. Sherry will also be assisted to continue her physical training in a mild to moderate way so that she can overcome her locomotor problems. Apart from this, period counselling will help her to fight against her depression that might have generated due to her partial problem in vision and poor participation in job field.
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