Exploring the Impact of Long-Term Conditions on Patient Care

INTRODUCTION

In this essay, I am going to reflect about a case of a learning disability (LD) that happened during my placement as an apprentice nurse associate on a cardiac surgery ward. The focus of this essay is to evaluate and analyse the impact of a long-term condition on the patient`s and family/carers life. As well as to address the importance of the role of a nurse associate when providing care to a person living with a long-term condition. A long-term condition is an illness that stays with the person for the rest of their life as there is no cure at present and requires the consumption of medicines as a treatment input (Whitehead and Seaton, 2016). In UK, around 15 million people are living with a long-term condition (Department of health 2012). Therefore, a long-term condition associated with poor mental health and well-being raises costs in treatment for NHS, expecting costs from £8 billion to £13 billion per year (Naylor et al., 2012).

To reflect on that scenario, I will use Gibbs (1988) reflective framework. This framework involves the use of the description, feelings and thoughts, evaluation, analyses, conclusion, and action plan. In the description I will introduce the scenario and give details about the patient’s long-term condition, mentioning the people involved as appropriate. In the next section, I will share my and other`s feelings and thoughts about the long-term condition scenario. On the evaluation section I would reflect about what went well and not that well in that care episode, followed by the “why” it went well and not that well in the analyses paragraph. To conclude what I learnt from that experience I will resume the main learning points of this essay and I will finalize with the action plan paragraph were I will address what I would do differently in the future if a similar situation would occur again.

DESCRIPTION

Bod (pseudonym) who is 31 years old with down syndrome since birth was admitted for cardiac surgery. Down syndrome is the set of physical, mental, and functional abnormalities that result from trisomy 21, the presence in the genome of three rather than the normal two chromosomes 21 (Bayen et al., 2018). Six days after the operation Bob was discharged as he was clinically stable. Three weeks later, the patient was readmitted with a wound infection requiring pain management treatment. Bob lives with his 57 years old mother who was accompanying him all the time. During my shift, I was looking after Bob and when I entered the room to perform the routine vital signs procedures, mum was on the phone crying and visibly distressed. After the call, I asked if she was alright and offered a cup of tea. She shared with me that she was not well, is been difficult for her to support her son and she feels that she was not doing her best. He is not been complying with the medication times and been lifting heavy objects. She added that she needs time for herself and to go somewhere out of stress. After that conversation and with Bob`s mum consent, I decided to share my concerns about that situation with the nurse in charge on that day. My colleague handed the information over to the ward manager and requested suggestions. The manager was promptly happy to offer support to Bob`s mother and had a few meetings with the patient`s mum. There were implemented a package of care to support Bob`s mum and a carer was provided. Few days after being discharged Bob`s mum wrote a feedback letter to the hospital appreciating all the support and care provided by the all team and mentioning the positive life changes in her life and her son`s life after the discharge.

FELLINGS AND THOUGHTS

Interacting with the patient and his mum for a few days gave me a better outlook of the mum`s feelings as I easily noticed that bob`s mum was sad at that time. I also felt compassionate with the mum`s sadness and her feelings about not being good enough to keep her son safe. Reflecting on that event, I think that building a relationship with patient`s and carers using active communication is important to get to know the patient and their carers/relatives thus making the difference to provide a better care plan. It is also relevant to mention that patient`s trust can be engaged using active communication. During the event, I thought that despite clear and open communication, it is also very important to provide person-centred care and advocate the patient`s/ carers interests and needs. I felt concerned with both of the people involved in the situation (Bob and his mum) for that reason I decided to speak with the nurse in charge to try to support them. In my perspective and reflecting about the nurse in charge decision making to seek assistance from the ward manager I think it was a very pertinent decision. The ward manager could spend more time with Bob`s mum and gathering the important information needed to make further decisions and actions. It is crucial to get as much information as possible from the patient/carers when working on a decision to implement a new care plan and it is also significant to access the patient`s/carers satisfaction with the decision implemented communication and decision making) (Haq et al., 2021). Regarding Bob`s feelings and thoughts about the situation, I understood that Bob was feeling pain on his wound due to the surgical site infection. Trying to put me in the patient`s shoes I also recognise that being away from his comfort zone and his entertainments such as video games affects the patient`s cooperation with the treatment.

EVALUATION

In hindsight, the experience had both good and bad elements which have led to an increased understanding of the experience in how to manage a long-term condition.

When the patient was discharged for the first time, the mum`s and patient`s needs were not assessed, as more questions could be done on the discharge talk. On the other hand, the open and active listening conversation between me and mum helped to understand her thoughts and feelings about what was going on with the patient and his relative. The good practice by advocating to the patient and handing over information to the nurse and ward manager was an appropriate action as it abled to provide a better care quality to the patient. Interprofessional and good teamwork between me and nurse, and between nurse and manager worked well.

From the manager referring to the care plan, discussions between the manager, mum, and site managers were very important to provide a good patient outcome. Informed decision making for a better care plan (with mum meetings) went well and proved professionalism. Advocating mum shown compassion as an apprentice nurse associate care towards the patient living with a long-term condition and his carer.

ANALYSIS

The use of relevant evidence-based literature is important to be referred in this essay to enable a deeper insight about the quality of care provision to patients living with a long-term condition. Consequently, it is important to take into consideration the patient`s medical history when they arrive at the surgical unit. The importance to assess the person living with a long-term condition is to identify any gap in the management of the condition and enabling to manage them safely to prevent the patient`s risk of harm post-operation. The individual with a long-term condition must learn how to independently look after their disease for example taking medicines appropriately and monitoring symptoms (Coulter et al., 2015). When not complying with that, further complications could happen in their health. As a result, in 2004 NHS has launched a plan called “The NHS Improvement Plan” consisting in providing support to people with long term conditions by capitalising in the improvement of the services closer to home (BMJ, 2005).

The provision of the presence of informative resources in long term conditions that are shared by the nurse on duty on being approached regarding Bob’s care acted as beneficial for the person. This is because the informative resources of care act as guidance for the family member taking care of the patient and carer regarding the way care is to be further provided for quality health condition of the patient (Browne et al., 2017). Thus, as per my perspective in overcoming pain and access enhanced treatment related to infection of the wounds after the surgery, the informative resources shared by the nurse in the form of care plan acted as a strength in delivering quality care to Bob regarding his pain management after surgery.

The NICE guidelines for learning disability (LD) patients inform that effective support and information regarding care intervention required by the patients after surgery are to be informed to the family members or carer support the patient (NICE, 2018). This is to allow the carer or family member to provide care well-informed about the strategic way to deliver support to the patient without confusion, stress and fear of hurting the patient (Arabiat et al., 2018). However, in the case of Bob, the guidelines have been violated as no account of Bob’s mom who is his key carer being provided where information after the surgery about the way to care for Bob’s wounds and health management was mentioned to her. It led hindered care to be delivered to Bob after the surgery due to which infection of his surgical wounds was experienced by him. The steps to prevent surgical site infections (SSIs) included effective handwashing before treatment of wounds, maintaining clear skin, using sterile drapes and bandage, careful use of antibiotic, clean air, controlled body temperature (Mamo et al., 2017).

In case of LD patients, due to their reduced intellect and difficulty in performing everyday activities leads their family member or carer to be solely responsible for surgical wound management (House et al., 2018). In the case of Bob who is a Down syndrome patient, it is seen that his mother mainly cared for his wound but due to lack of effective information regarding the way surgical wound management is to be attained, it led the patient to suffer infection. In the UK, it is reported that SSIs in vascular and cardiac surgery have reduced to 1.7% from 3.3% in 2019-20 when compared to 2018-19 (assets.publishing.service.gov.uk, 2020). It is reported by Rothwell (2020) that in the UK each of the SSI mainly cost £10,000 per person leading NHS to bear more expenditure in managing care for the patients. It indicates that increased treatment costs would be suffered by Bob’s parents due to the carelessness in informing her regarding the way to care for her son after surgery which makes it considered as a key weakness in the care.

Down syndrome is a condition in which an individual has extra chromosomes due to which they represent the flattened face, short neck, intellectual disability, small hands and feet and others (Bull, 2020). There is no cure for Down syndrome and it adversely affects the speech and educational ability of the person due to which they show hindrance in making effective communication and understand facts to act on them (Fortea et al., 2020). The presence of down syndrome in patients makes them show repetitive, compulsive and anxious behaviour without explanation which leads the carer to face the psychological challenge of understanding the way to provide support for the patient so that they accept and comply with it to develop enhanced health (Malle et al., 2021). In case of Bob who is also a Down syndrome patient, his mother was psychologically challenged to feel frustration and incompetence to delivery appropriate care to him as she failed to understand the way to control the emotional condition of Bob to make him comply with the care after surgery. However, the carer being trained to understand the way of supporting Down syndrome patients after surgery led the individual to be successful in effective wound management and care of Bob. Thus, the introduction of carer was beneficial in supporting enhanced well-being Bob after the SSI.

The NHS allows regular check-up of Down syndrome patients and ensures involvement of social care and psychologists in helping people with the disease as well as family members in caring for the patient (NHS, 2021). This is because carer for Down syndrome often faces stress and burnout due to increased burden of care which makes them struggle to delivery effective care on their own (Phillips et al., 2017). In Bob’s case, there was lack of social support for Bob’s mother and no mandatory evaluation was made for him by the intervention of nurses after release from the hospital which is inappropriate towards management of his health. The adults with Down syndrome show lower mean heart rate and greater prevalence of lower cardiac valve pathology due to which they have high risk of heart failure and require cardiac surgery (Antonarakis, 2017). Thus, Bob’s cardiac surgery was important as he showed hindered valve functioning, but the post-monitoring and delivery of care after release from the hospital was found to be provided accurately due to lack of support provided to Bob’s mother in delivering care to him.

The nursing associates have the role to free up the registered nurses from general care role in complex care to make them able to focus on more critical aspects of complex care (NMC, 2018). In the case of Bob, it was seen that as a nursing associate I was able to free the nurses of providing basic care needs of Bob to focus their skill to deliver more critical aspects of complex care needed by him. This is evident as I performed all the collection of data required in framing the care plan of SSI management for the patient by discussing with Bob and his mothers to make the nurse focus more on planning his care that is critical. The NMC Code of Conduct mentions that nursing associates are to escalate communication between patients and them along with perform active listening and work as a team with nurses to delivery care (NMC, 2018). In case of Bob, I as a nursing associate performed effective communication with Bob’s mother in all possible way to understand the hindrance in care delivery to Bob she was facing to later inform it to nurses to be used in planning the care. The effective communication with the patient and family members or carers is significant for nurses and nursing associates to identify key needs and demands of the patients that are to be fulfilled in the care plan for their satisfaction of care (Ria et al., 2017). The nursing associate ensure patient safety and interest by evaluating the surrounding risk present in care environment so that appropriate risk management through the help of nurses can be made to resolve the condition (Barber, 2019). However, in Bob’s case, during initial release from hospital after the surgery, the risk assessment was not made properly due to which SSI was faced by him which compromised his health and safety to live enhanced life.

CONCLUSION

The overall care regarding Bob’s condition led me to learn that effective concerns are to be raised in care at the initial stage when the care arrangement made are not developed in the best interest of the patient. This is because it would lower care satisfaction of the patient and relapse their condition to face hindered health consequences (Carthon et al., 2021). I learned that Down syndrome affects the way a person behaves and thinks due to which they are unable to take own care. In this condition, the detailed way of delivering care to the patient is to be informed and required social support to deliver unhindered care is to be arranged for the carer or family member responsible to be caring for the patients (NHS, 2021). This is because Bob’s mother being neglected of basic social support and effective education of way to deliver acre to Bob on initial release from the hospital after surgery led him to face surgical site infection that could have been prevented with more strategic care developed as mentioned.

The nursing associates are responsible in cooperative and working as a team with the nurses (Peate, 2018). I was able to perform the function effectively as I effective shared information received from the basic communication with Bob and his mother based on which the nurses arranged appropriate care for him. There is huge burden of care faced by family members in caring for Down syndrome patients as they are not independent in taking own care with responsibility which makes them feel burned out and stressed (Onyedibe et al., 2018). Thus, the introduction of additional carer to support Bob’s health management, proper intake of medication and others was made as it helped to reduce the stress and burning of Bob’s mother by creating a helping hand and assistance for her. The nursing associate is responsible for detecting the risk of patients and ensure safety for them (Peate, 2018). I was able to ensure safety of Bob after his reporting of SSI with arrange of effective supporting resources as mentioned from the feedback of his mother. I represented strong communication ability, enhanced team working, confidence, empathy and decision-making ability.

ACTION PLAN

In case of similar care to be provided again, I would show increases assertiveness and confidence to develop communication with the patient’s family members who are responsible in taking care of the patient. I would also try to develop new communication ways to non-verbally communicate with learning disability patients like Bob to understand their personal needs apart from those reported by their carer or family member (Bob’s mother). This is because it would make the patients feel more valued and assist the nurses in framing better person-centred care that included decision from the patients who have learning disability of any nature and their family members who are supporting them (Santana et al., 2018). I would try to arrange training for carer or family members of learning disability patients at the initial stage to avoid their confusion regarding the way to delivery care. Moreover, I would arrange social support for helping carer of Bob and similar patients to avoid them experiencing stress and burnout from the increased burden of care.

I intend to perform risk assessments of patients like Bob before their initial release from the hospital. This is risk assessment prior to the release of any patients with surgical procedure from hospital helps to identify nature and intensity of any risk of SSI and others at the initial stage before their occurrence (Kaltoft et al., 2018). I also intend to inform the identified risk to the nurses so that they can arrange effective strategic support to resolve them to ensure safety and enhanced well-being of patients with less chances of readmission. The role of the nursing associate is to administer basic first aid to the patient and be respectful as well as compassionate while delivering care (Peate, 2019). I already showcased the skills in the current care and plan to implement them in better and constructive way for any patients in future. I also intend to learn the way evidence-based care is to be provided to the patients in future as it ensures fewer errors to be made and enhanced quality support for the patients (Peate, 2019).

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References

Antonarakis, S.E., 2017. Down syndrome and the complexity of genome dosage imbalance. Nature Reviews Genetics, 18(3), pp.147-163.

Arabiat, D., Whitehead, L., Foster, M., Shields, L. and Harris, L., 2018. Parents' experiences of family centred care practices. Journal of pediatric nursing, 42, pp.39-44.

Barber, C., 2019. The Law and the Nursing Associate. Learning to Care E-Book: The Nurse Associate, p.46.

Bayen, E., Possin, K.L., Chen, Y., de Langavant, L.C. and Yaffe, K., 2018. Prevalence of aging, dementia, and multimorbidity in older adults with Down syndrome. JAMA neurology, 75(11), pp.1399-1406.

Browne, J., Edwards, D.A., Rhodes, K.M., Brimicombe, D.J. and Payne, R.A., 2017. Association of comorbidity and health service usage among patients with dementia in the UK: a population-based study. BMJ open, 7(3), p.e012546.

Browne, J., Edwards, D.A., Rhodes, K.M., Brimicombe, D.J. and Payne, R.A., 2017. Association of comorbidity and health service usage among patients with dementia in the UK: a population-based study. BMJ open, 7(3), p.e012546.

Bull, M.J., 2020. Down syndrome. New England Journal of Medicine, 382(24), pp.2344-2352.

Carthon, J.M.B., Hatfield, L., Brom, H., Houton, M., Kelly-Hellyer, E., Schlak, A. and Aiken, L.H., 2021. System-level improvements in work environments lead to lower nurse burnout and higher patient satisfaction. Journal of nursing care quality, 36(1), pp.7-13.

Coulter, A., Entwistle, V.A., Eccles, A., Ryan, S., Shepperd, S. and Perera, R., 2015. Personalised care planning for adults with chronic or long‐term health conditions. Cochrane Database of Systematic Reviews, (3).pp.89-129.

Fortea, J., Vilaplana, E., Carmona-Iragui, M., Benejam, B., Videla, L., Barroeta, I., Fernández, S., Altuna, M., Pegueroles, J., Montal, V. and Valldeneu, S., 2020. Clinical and biomarker changes of Alzheimer's disease in adults with Down syndrome: a cross-sectional study. The Lancet, 395(10242), pp.1988-1997.

Gibbs G (1988). Learning by Doing: A guide to teaching and learning methods. Further Education Unit. Oxford Polytechnic: Oxford

Haq, R., Kong, A. and Gulasingam, P., 2021. A Multidisciplinary Approach to Implement Personalized Breast Cancer Treatment and Care Plans. Current Oncology, 28(1), pp.767-782.

House, A., Latchford, G., Russell, A.M., Bryant, L., Wright, J., Graham, E., Stansfield, A. and Ajjan, R., 2018. Development of a supported self-management intervention for adults with type 2 diabetes and a learning disability. Pilot and feasibility studies, 4(1), pp.1-11.

Kaltoft, M.K., Nielsen, J.B. and Dowie, J., 2018. Separating Risk Assessment from Risk Management Poses Legal and Ethical Problems in Person-Centred Care. Studies in health technology and informatics, 251, pp.23-26.

Malle, L., Gao, C., Hur, C., Truong, H.Q., Bouvier, N.M., Percha, B., Kong, X.F. and Bogunovic, D., 2021. Individuals with Down syndrome hospitalized with COVID-19 have more severe disease. Genetics in Medicine, 23(3), pp.576-580.

Mamo, T., Abebe, T.W., Chichiabellu, T.Y. and Anjulo, A.A., 2017. Risk factors for surgical site infections in obstetrics: a retrospective study in an Ethiopian referral hospital. Patient safety in surgery, 11(1), pp.1-9.

Naylor, C., Parsonage, M., McDaid, D., Knapp, M., Fossey, M. and Galea, A., 2012. Long-term conditions and mental health: the cost of co-morbidities.pp.23-56.

NICE 2018, Learning disabilities and behaviour that challenges: service design and delivery, Available at: https://www.nice.org.uk/guidance/ng93/chapter/Recommendations#achieving-change-strategic-planning-and-infrastructure [Accessed on: 12 July 2021]

NMC 2018, Standards of proficiency for nursing associates, Available at: https://www.nmc.org.uk/globalassets/sitedocuments/standards-of-proficiency/nursing-associates/print-friendly-nursing-associates-proficiency-standards.pdf [Accessed on: 12 July 2021]

Onyedibe, M.C.C., Ugwu, L.I., Mefoh, P.C. and Onuiri, C., 2018. Parents of children with Down Syndrome: Do resilience and social support matter to their experience of carer stress?. Journal of Psychology in Africa, 28(2), pp.94-99.

Peate, I. ed., 2019. Learning to Care E-Book: The Nurse Associate. Elsevier Health Sciences.

Peate, I., 2018. Self-regulation and the nursing associate. British Journal of Healthcare Assistants, 12(2), pp.81-83.

Phillips, B.A., Conners, F. and Curtner-Smith, M.E., 2017. Parenting children with down syndrome: An analysis of parenting styles, parenting dimensions, and parental stress. Research in developmental disabilities, 68, pp.9-19.

Ria, F., Bergantin, A., Vai, A., Bonfanti, P., Martinotti, A.S., Redaelli, I., Invernizzi, M., Pedrinelli, G., Bernini, G., Papa, S. and Samei, E., 2017. Awareness of medical radiation exposure among patients: a patient survey as a first step for effective communication of ionizing radiation risks. Physica Medica, 43, pp.57-62.

Rotwhwell, N., 2020, The time is now: we must act to reduce surgical site infections, Available at: https://www.hospitaltimes.co.uk/the-time-is-now-we-must-act-to-reduce-surgical-site-infections/ [Accessed on: 12 July 2021]

Santana, M.J., Manalili, K., Jolley, R.J., Zelinsky, S., Quan, H. and Lu, M., 2018. How to practice person‐centred care: A conceptual framework. Health Expectations, 21(2), pp.429-440.

Whitehead, L. and Seaton, P., 2016. The effectiveness of self-management mobile phone and tablet apps in long-term condition management: a systematic review. Journal of medical Internet research, 18(5), p.e4883.