Case Study: Intellectual Disabilities
Student’s Name
Institutional Affiliations
Intellectual Disabilities
The Challenges Experienced Whilst Seeking Hospital Care
Intellectual disabilities are among the leading causes of death in Australia. They are among the health conditions that pose significant challenges to patients, their caregivers, and healthcare providers (Navas et al., 2021). Michelle, an Australian with an intellectual disability, has developed serious health complications that have subsequently led to her death. One of the challenges related to Michelle’s intellectual disability and health condition is that she is unable to communicate effectively (Worthington, 2017). In this respect, she cannot express her need to enable her to receive proper diagnosis and appropriate treatment. As Liao et al. (2021) explain, people with intellectual disabilities commonly experience delayed diagnosis and misdiagnosis of serious health problems. The fact that Michelle has an intellectual disability has led to the failure of the doctor to conduct a comprehensive assessment in order to establish the actual cause of her current symptoms. Michelle has an ear infection, has developed seizures, is presenting with agitation, and is in great pain but the doctor still goes ahead and discharges her from the hospital because he attributes her symptoms to her condition (Worthington, 2017). According to the doctor, Michelle is not sick. She is just presenting with upsetting temper tantrums because she has an intellectual disability. From Michelle’s case, it is evident that people with intellectual disabilities easily experience misdiagnosis and delayed diagnosis, a factor that leads to avoidable deterioration in health and poor health outcomes.
Primary caregivers of people with intellectual disabilities usually wish that their relatives can obtain equally safe and quality care as persons who do not have such conditions. For example, Michelle’s mother is experiencing the challenge of convincing the doctor to allow Michelle to stay in the hospital to obtain proper treatment. She believes that her daughter needs treatment but lacks the power to convince the doctor to make her stay in the hospital (Worthington, 2017). Additionally, caregivers of people with intellectual disabilities may face serious psychological impacts in the event of the death of their loved ones (Wos et al., 2021). For instance, eight years after the death of Michelle, her mother Maureen is still tormented by the thought that her daughter’s demise could be avoided. Addressing such challenges can enable caregivers to effectively support their sick relatives.
Healthcare professionals face a great challenge when it comes to diagnosing health problems in persons with intellectual disabilities. In Michelle’s case, the hospital staff does not deliberately discriminate against her but does not learn that she has a serious illness in addition to her intellectual disability (Worthington, 2017). A lack of specialized training among hospital staff is one of the major contributing factors to unnecessary deaths among people with intellectual disabilities in Australia (Ee et al., 2021). Working with inadequately trained hospital staff prevented Michelle from receiving patient-centered care.
Strategies to Promote Shared Decision-Making and Improve the Experience and Outcomes
Integrated care that is offered by members of multidisciplinary teams has a great influence on the health outcomes of patients, especially those who are suffering from complex health conditions. Multidisciplinary care promotes shared decision-making and improves the experience and outcomes of patients with intellectual disabilities and their caregivers (Buono et al., 2021). One of the strategies is to document clear hospital policies that guide healthcare professionals to work with multidisciplinary teams when caring for people with intellectual disabilities. Teamwork and collaboration are among the practice competencies that healthcare professionals are required to possess. Including them in practice policies encourages shared decision-making and enhances the achievement of quality patient care (QSEN Institute, 2022). Another strategy that can promote shared decision-making is utilizing a consensus-based approach where patients and their caregivers are placed at the center of the decision-making process (Noorlandt et al., 2021). In a study conducted by Noorlandt et al. (2021), the researchers discovered that utilizing a consensus-based approach that involves persons with intellectual disability, their caregivers, and healthcare professionals in decision-making promotes meaningful experiences and outcomes not only for the patients but also for their caregivers. It is important to understand that involving healthcare teams with adequate training and experience is key to ensuring success in the care of persons with intellectual disabilities.
Strategies for shared decision-making can be applied to improve the experiences and outcomes of Michelle and her mother. For example, having clear practice policies that support multidisciplinary team involvement when caring for persons with intellectual disabilities can guide healthcare professionals in the hospital to engage in consultative decision-making before opting for a discharge (Buono et al., 2021). If such policies were in place, the doctor caring for Michelle could have worked with other doctors and nurses to make an accurate diagnosis and recommend an appropriate treatment for her. Additionally, utilizing a consensus-based approach that involves Michelle, her mother, and healthcare professionals in decision-making can promote meaningful experiences and outcomes (Bell et al., 2022). Michelle has multiple health needs that can best be addressed by a team of healthcare professionals with specialized training in different areas of care.
Key Elements of Person-Centered Care
Persons with intellectual disabilities require holistic person-centered care that adequately addresses their needs and demonstrates respect for their values, beliefs, and preferences. The key elements of person-centered care include “respect for patients’ preferences, access to care, emotional support, information and education, involvement of family and friends, continuity and secure transition between health care settings, physical comfort, and coordination of care (Cramm & Nieboer, 2018, p. 143).” When providing patient-centered care, healthcare professionals must strive to develop meaningful therapeutic relationships with their patients. They can achieve this through communicating effectively with patients and their families and by addressing communication challenges that might prevent them from creating meaningful therapeutic relationships (QSEN, 2022; Sato, 2022). Generally, patient-centered care entails the provision of holistic care that addressed the physical, psychological, emotional, and spiritual needs of patients and their families (Charosaei et al., 2021). Involving patients and their families in decision-making regarding their care is a crucial element in the provision of patient-centered care.
Published evidence associates patient-centered care with numerous benefits for patients, especially for persons with intellectual disabilities. According to Ferdinand et al. (2021), people with intellectual disabilities usually have difficulties with communication which can best be addressed by implementing safe and culturally-appropriate communication strategies. The authors further assert that involving patients in care planning promotes positive health outcomes and prevents health complications for patients with intellectual disabilities and their families. Patient-centered care can generate numerous benefits for Michelle. Due to her intellectual disability, Michelle is experiencing communication challenges that are negatively affecting her ability to receive appropriate care (Worthington, 2017). A patient-centered care approach that addresses Michelle’s communication challenges will enable the healthcare provider to understand her needs and even involve her in decision-making when developing a care plan.
References
Bell, C., Appel, C. W., Frølich, A., Prior, A., & Vedsted, P. (2022). Improving health care for patients with multimorbidity: a mixed-methods study to explore the feasibility and process of aligning scheduled outpatient appointments through collaboration between medical specialties. International Journal of Integrated Care, 22(1), 17. https://doi.org/10.5334/ijic.6013
Buono, S., Zingale, M., Città, S., Mongelli, V., Trubia, G., Mascali, G., Occhipinti, P., Pettinato, E., Ferri, R., Gagliano, C., & Greco, D. (2021). Clinical management of individuals with Intellectual Disability: The outbreak of Covid-19 pandemic as experienced in a clinical and research center Research in Developmental Disabilities. Research in Developmental Disabilities, 110, 103856. https://doi.org/10.1016/j.ridd.2021.103856
Charosaei, F., Rostami, S., Esmaeili, M., Molavynejad, S., & Vanaki, Z. (2021). Effective strategies for implementing patient-centered care in cardiac care unit: An opportunity for change. Journal of Education and Health Promotion, 10, 380. https://doi.org/10.4103/jehp.jehp_1662_20
Cramm, J. M., & Nieboer, A. P. (2018). Validation of an instrument for the assessment of patient-centred care among patients with multimorbidity in the primary care setting: the 36-item patient-centered primary care instrument. BMC Family Practice, 19(1), 143. https://doi.org/10.1186/s12875-018-0832-4
Ee, J., Lim, J. M., Stenfert Kroese, B., & Rose, J. (2021). Services for people with intellectual disabilities and mental health problems in Singapore: perspectives from mainstream mental health professionals. International Journal of Developmental Disabilities, 67(5), 371–380. https://doi.org/10.1080/20473869.2021.1932394
Ferdinand, A., Massey, L., Cullen, J., Temple, J., Meiselbach, K., Paradies, Y., Baynam, G., Savarirayan, R., & Kelaher, M. (2021). Culturally competent communication in Indigenous disability assessment: a qualitative study. International Journal for Equity in Health, 20(1), 68. https://doi.org/10.1186/s12939-021-01402-9
Liao, P., Vajdic, C., Trollor, J., & Reppermund, S. (2021). Prevalence and incidence of physical health conditions in people with intellectual disability – a systematic review. PloS One, 16(8), e0256294. https://doi.org/10.1371/journal.pone.0256294
Navas, P., Amor, A. M., Crespo, M., Wolowiec, Z., & Verdugo, M. Á. (2021). Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective. Research in Developmental Disabilities, 108, 103813. https://doi.org/10.1016/j.ridd.2020.103813
Noorlandt, H. W., Korfage, I. J., Tuffrey-Wijne, I., Festen, D., Vrijmoeth, C., van der Heide, A., & Echteld, M. (2021). Consensus on a conversation aid for shared decision making with people with intellectual disabilities in the palliative phase. Journal of Applied Research in Intellectual Disabilities: JARID, 34(6), 1538–1548. https://doi.org/10.1111/jar.12898
QSEN Institute. (2022). QSEN competencies. https://qsen.org/competencies/pre-licensure-ksas/
Sato, T. (2022). Creation of care through communication by nurses, welfare workers, and persons (children) with profound intellectual multiple disabilities at a day care center: emancipation from the Japanese “shame culture”. ANS. Advances in Nursing Science, 45(2), E69–E93. https://doi.org/10.1097/ANS.0000000000000386
Worthington, E. (2017). People with intellectual disabilities twice as likely to suffer preventable death, study finds. https://www.abc.net.au/news/2017-02-08/study-finds-intellectually-disabled-two-times-preventable-death/8248772?utm_campaign=abc_news_web&utm_content=mail&utm_medium=content_shared&utm_source=abc_news_web
Wos, K., Kamecka-Antczak, C., & Szafrański, M. (2021). Remote support for adults with intellectual disability during COVID-19: From a caregiver’s perspective. Journal of Policy and Practice in Intellectual Disabilities, 18(4), 279–285. https://doi.org/10.1111/jppi.12385