NUR 460 MIDTERM REVIEW.docx

**[NUR 460 -- Midterm Test Review ]** **[Week 1: Persistent Illness ]** In terms of study tips: - Focus on the lectures/slides and recall the activities and discussion from seminar. - For theories/frameworks/models covered (e.g., shifting models of illness/wellness, care coordination...

**[NUR 460 -- Midterm Test Review ]** **[Week 1: Persistent Illness ]** In terms of study tips: - Focus on the lectures/slides and recall the activities and discussion from seminar. - For theories/frameworks/models covered (e.g., shifting models of illness/wellness, care coordination framework, uncertainty theory), study them by thinking about how you could apply the components of the theories to your nursing practice. For instance, you might want to review the components of a theory, like the care coordination framework which is reviewed in detail in the required reading for week 2, and think about the actions/interactions you could undertake to provide coordinated care. - Review the challenges faced by people with persistent and complex illness and the strategies you could incorporate into your nursing care to improve outcomes and care coordination. - You do not need to know any statistics (e.g., epidemiology). - You also don\'t need to know the specifics around the transition timeline (e.g., what should be done at certain ages).  What you should know, are the benefits of an organized transition program, some/many of the actions/activities that should be accomplished during the transition process and how you might incorporate them into your care coordination (like we discussed in seminar). **Chronic Illness:** refers to health conditions that persist over extended periods and that are often associated with participation and activity limitations - **Loss of self** is a primary source of suffering for people with chronic illness - Chronic illness contributes substantially to: - Morbidity: rates of disease in a population - Mortality: the rates of deaths in a population - Chronic illness is significantly higher among Canada's indigenous people - Common conditions: diabetes, hep C, HIV, heart disease, HTN **Acute and Chronic Illness** - Acute illness on top of chronic illness is common - Comorbidity: 2 or more disorders not directly related, one condition can make the other one worse - Acute + chronic - Ex: Pneumonia + MS - Must understand underlying chronic illness in order to treat acute illness - Multimorbidity: 2 or more chronic medical conditions in the same person, may not be related - Chronic + chronic - Ex: Diabetes + asthma + osteoporosis - Associated w dec QoL, polypharmacy, and multi + complex medical regimens - Demands high standard of nursing skills - Optimal health is a challenge to achieve - Can result in complex self care needs, limits mobility, multiple HCP appts (challenging and time consuming lack of engagement, not following prescriptions properly) - May lead to inc use of ER **Factors contributing to Chronic Illness** - Key determinants of health - Risk factors - Modifiable - Nonmodifiable - Role of genetics - Genetic testing can lead to preventative strategies (sooner you know, sooner you can treat or prevent it) - Role of aging - More likely to have at least 1 chronic condition - 50% of the world age 80+ have 3 or more chronic illnesses - **Factors to consider with Chronic Illness** - Associated disability - Medical -- disability to be medically correct - Social- disability is a socially created disease, not an inherent attribute to individuals - Biopsychosocial -- WHO says this is best bc it allows both to be true - If environment is adjusted to meet individual needs, then no limitation to QoL will be experienced - Psychosocial dimensions - The sick role: pts are victims of their chronic illness - True about pts who are seen and treated - Treat them as human beings, listen to their stories, respect their choices for tx - Self-efficacy: critical bc they are managing their condition on their own - Health-related hardiness (HRH): when ppl experience high lvls of stress without falling ill - Mood disorders: can trigger depression, 1/3 exp depression, not all psychological -- often d/t inflammation - Fatigue: most distressing symptoms ppl can have w chronic illness, v frustrating, can lead to misunderstanding by others - Stigma: pt may be labeled by their tx and illness - May influence error in delivery of care - Can cause unequal power balance between us and the pt - QoL and HRQL: perceptions of physical and mental health status and key variations of health status - Living with chronic illness - Loss of self is a primary source of suffering for people with chronic illness - Normalization and/or covering - Pts are the expert pt -- they know more about their illness than we'll ever know -- **listen to your pt** - Ask yourself: am I treating the pt the way I want to be treated? - Chronic illness and caregiving - Caregiver burden  **Shifting Perspectives Model of Chronic Illness** A diagram of a process Description automatically generated - Ongoing continuously shifting process - **Illness in the foreground** - Focus: loss, sickness, burden associated - Happens during initial diagnosis or exacerbation of illness - **Wellness in the foreground** - Person creates harmony b/w identity and their disease - Nurses role: educate pt, help them understand their disease and how to self-manage - Can be done through supportive environment - Identify illness' unique patterns of response - Help pt make connections with others to share their stories to find support - Nurses need to be aware of emotional distress that occurs when there is acute + chronic or exacerbation - Can lead pt to lose control, feel lonely, pain, loss of dignity - **Treat the person, treat them as a person, do not just treat the illness** - Recognize pt strength, listen to their stories, we can help them return to wellness as this will help us think of an incorporate better strategies to manage their illness **Chronic illness and optimizing health outcomes** - Self-management: patients are in control - Related to better overall physical results, mental results and QoL - Nurses responsible for developing partnership w pts through open, caring, ongoing, mutually responsive convos - Compliance vs adherence - Adherence: pt agrees with healthcare team's tx plan - Instead of saying pt non-compliant -- find out WHY - Coping with chronic illness - Nursing care - Partnership between nurse and pt (and caregivers) - Be alert to potential barriers to successful self-management - Use effective teaching methods (ex. Teach-back) - SDOH can affect successful self-management **What patients with chronic illness want from the health care system** - Access to information concerning: - Diagnosis and its implications - Available treatments and their consequences - Potential impact on the patient's future - Continuity of care and ready access to it - Coordination of care, particularly with specialists - Infrastructure improvements (scheduling, wait times, prompt care) - Ways to cope with symptoms such as pain, fatigue, disability, and loss of independence - Ways to adjust to disease consequences such as uncertainty, fear and depression, anger, loneliness, sleep disorders, memory loss, exercise needs, nocturia, sexual dysfunction, and stress **[Week 2 -- Medical Complexity ]** **CMC: A Definitional Framework** - Children with medical complexity have more than 1 chronic condition multi morbidity, and usually multi systemic issues (ex. Heart and feeding issues) - Relying on technology for support or for treatments (eg. NG tube, pacemakers) - Frequent flyers require specialized care and require care from multiple HCPs - Inc caregiver and service requirement in the community and home setting Inc social and financial burden **Healthcare challenges for CMC** - - Poor communication between healthcare staff - Fragmented care - Multiple providers - Poor health outcomes - Frequent hospitalizations - Increased risk for medical errors - Inequitable resources and available services - More reactive care vs. anticipatory and preventative care - Limited family and community supports - Parents are forced to become healthcare navigators - Economic burden and constant care needed **Common medical concerns for CMC** - CNS -- seizures, pain, hypertonia, movement disorders, sleep issues - ENT -- vision/hearing impairments, secretions, obstructive/central apnea - RESP -- need for support (O2, CPAP/BIPAP, trach, suction, cough assist), pneumonias - CVS -- Arrhythmias, dec cardiac function - GI -- GERD, emesis, constipation, diarrhea - Growth/Nutrition -- enteral or parenteral feeds, feeding safety (aspiration), weight gain/loss - GU -- UTIs, nephrolithiasis - Endocrine -- precocious/delayed puberty, osteopenia - MSK -- scoliosis, contractures, hip subluxation, fragility fractures - Derma -- pressure sores, dermatitis **Understanding the whole picture** - Requires holistic approach - It is important to know caregiver decision making generally follows what they perceive as inc QoL - Inc financial and social demands for caregivers - Split dynamic between parents -- one parent is usually more invested medically - Leads to inc stress and demands inc rate of divorce - Need to understand overall goals form medical care -- assess family care goals, CPR, etc. **From Chaos to Streamlined Care** - Having multiple different teams disjointed care - Care coordination and communication between services is important - Ensuring continuity of care - Identifying a care coordinator is important -- someone needs to take on the role increased satisfaction for families **CCKO -- Complex Care Kids Ontario** - Standard operational definition for children with medical complexity who are medically fragile and/or technology dependent - Under 18 years of age and meets at least one criterion from EACH of the following four conditions - Technology dependent and/or users of high intensity care - Fragility - Chronicity - Complexity **Care Plans** - Outline major issues and medical complexities - Medical passports can be given to all care providers - Look up care plan for valuable info when dealing with a complex pt **Complex health and social care needs** - 6 areas of vulnerability - Pt with 2 or more elements or major vulnerability in one of the 6 areas is considered as having complex needs  **Summary of Article: Care coordination activities** **Activities Targeting Patients, Families, and Caregivers** - **Identify Beneficiaries**: Collaborate with general practitioners to identify patients with complex needs or high healthcare expenditures and invite them for intervention. - **Assess Needs and Goals**: Evaluate comprehensive patient, family, and caregiver needs and goals, including caregiver burden. - **Develop Tailor-Made Care Plans**: Create personalized care plans with patients; ensure plans are updated, accessible, and communicated to all involved professionals. Educate patients on care coordination efforts. - **Provide Direct Care**: Follow guidelines for disease risk reduction, monitor health status, conduct basic screenings, and manage symptoms and concurrent chronic conditions. - **Monitor and Respond to Changes**: Track symptoms, medications, clinical results, and emergency events; adjust care plans as needed. - **Establish Relational Continuity**: Build trust-based relationships, advocate for patients, and serve as the main contact person. - **Plan End-of-Life Care**: Identify advance directives, inform patients of their rights, and assist with end-of-life planning and emotional support. - **Support Activation and Empowerment**: Encourage patient involvement in care, support self-management and adherence, and facilitate navigation of healthcare and community resources. **Additional Activities for Patient and Family Support** - **Education and Counseling**: Provide individualized education and counseling. - **Support Self-Management and Adherence**: Help patients manage their conditions and adhere to treatment plans. - **Emotional and Psychological Support**: Offer support for emotional and psychological well-being. - Support groups, speaking with someone who has been through it, online virtual support, providing 1 on 1 care from nurse to pt - **Technical and Administrative Support**: Assist with monitoring biological parameters and administrative tasks. **Activities Targeting Health and Social Care Professionals and Services** - **Clarify Roles and Responsibilities**: Define roles, negotiate responsibilities, and ensure shared accountability among professionals. - **Exercise Leadership**: Build relationships, offer local knowledge, and facilitate interdisciplinary care approaches. **Activities Linking Patients with Care Professionals and Services** - **Coordinate Community Resources**: Arrange access to community resources and provide guides to social and welfare services. - **Coordinate Within Healthcare Teams**: Organize case reviews, team meetings, and referrals; assist with appointment preparation and patient navigation. - **Facilitate Care Transitions**: Coordinate care during transitions, including hospital discharges, and update care plans accordingly. **Cross-Cutting Activities Related to Communication** - **Open Communication with Patients**: Engage in honest discussions about health and care. - **Interprofessional Communication**: Clarify roles, responsibilities, and shared accountability with other professionals. - **Information Transfer**: Communicate and document care plans and patient information accurately and timely. **Discussion** - **Central Role of Nurses**: Nurses play a critical role in care coordination for patients with complex needs, contributing significantly to improving care and outcomes. - **Model Flexibility**: The proposed model of care coordination is flexible and should be tailored to specific patient needs and contexts. - **Intensity and Frequency**: Higher intensity and frequency of activities are necessary for patients with complex needs compared to those with less complex conditions. - **Relational Continuity**: Maintaining a continuous and trusting relationship with patients is crucial for effective care coordination. - **Importance of Home Visits**: Home visits are vital for understanding patient needs and planning appropriate care. **Implications for Research and Practice** - **Fidelity and Capacity Building**: Future research should assess the fidelity of interventions and the need for capacity building in less frequently performed activities. - **Classification of Activities**: Establish a classification of activities based on their efficacy and resource consumption. - **Professional Roles**: Further research could clarify the specific contributions of different professionals in care coordination. - **Co-location Benefits**: Co-location of health and social care professionals enhances teamwork and integrated care. - **Documentation and Recognition**: Develop systems to document care coordination activities for financial and societal recognition. **Strengths and Limitations** - **Strengths**: Comprehensive synthesis of nursing care coordination activities; valuable insights validated by a patient-research-partner. - **Limitations**: Lack of comparison between interventions; potential missing details due to variability in study descriptions. **Conclusion** - **Variety of Interventions**: Multiple interventions are used for care coordination, requiring a high frequency and intensity of activities. - **Continuity of Care**: Ensuring availability and continuous support enhances care coordination. - **Model Development**: Primary care models should support multidisciplinary teamwork and integrate care effectively while balancing efficiency and intensity. **Integrated Health Care System** - Move from a fragmented to a more integrated healthcare system - Need to be able to coordinate care within the community and across all care levels - Integrated care has the potential to improve: - Continuity of care - Accessibility - Quality and safety of care - Cost effectiveness of services - Look at the pt more holistically and ensure close-loop communication **Models of integrated care** - For integrated care to be successful -- care coordination is essential - Lack of global consensus on a single model, but all agreed to care coordination, but it can take place in many ways - No single conceptual model or framework - Variety of approaches: - Case management - Pt navigation - Collaborative care - Disease management - Care management - Chronic care model **Effective care coordination** - Involvement of a multidisciplinary primary care team that functions cooperatively and cohesively to provide the right care in the right place at the right time - The role of care coordinator can be undertaken by professionals from various backgrounds: nursing, social work, OT, PT - It could be team-based model of care coordination (e.g., nurse and social worker) - Choice of CC should take into consideration contextual factors, the population of interest and the goals of the program - Could be an exclusive or combined role (combined with wider team management responsibilities or with clinical provision of care) **Nurse-led care coordination** - Improves access to appropriate treatment - Reduces costs - Improves clinical outcomes - Improves quality of care - Improves communication between staff - Increases safety of vulnerable patients during transition - Reduces unplanned readmissions - Reduces medication errors, or errors that were made d/t lack of education **A model of nursing care coordination for medically complex patients** - Three categories - Activities targeting pt and family - Activities that link pt with services and MDT - Activities that target MDT - Note interrelation between these categories - Thinking of what works for pt at home and gradually shift our care to match that so they can be prepared for the same care at home - Adapt to their schedule **What is your role in caring for medically complex patients?** - Support treatment and connection - Continuity, expertise in practice area, system navigation - Great opportunity to support goal setting, joint decision making, partnership, have discussions about goals of care and advance care planning - Families look to us for medical expertise, support, guidance and a partnership **[Week 3 -- Transitions of Care ]** **What are transitions of care?** - A set of actions designed to ensure the coordination and continuity of health care as pts transfer between different locations or different levels of care within the same location - From home to hospital or residential care setting - From hospital to home - Between hospital wards - From hospital to hospital or residential care setting - Consultations in out-patient facilities - Transitions of care are high-risk scenarios for pt safety: - Inc in morbidity - Inc in mortality - Inc in adverse events - Delays in receiving appropriate tx and community support - Additional primary care emergency department visits - Additional or duplicated tests or test loss to follow up - Preventable readmissions to hospital - Emotional and physical pain and suffering for patients, carers and families - Patient and provider dissatisfaction with care coordination - Transfer: allows safe efficient transfer of responsibility from one care provider to another or one facility to another ensuring all required information needed to properly care for the client is available to the receiver **Intersection of risk factors** - The intersection of risk factors associated with patient transitions - Consider perils at each step and anticipate needs related to safe transfer +-----------------------+-----------------------+-----------------------+ | **Patient Factors** | **Personnel Factors** | **System Factors** | +=======================+=======================+=======================+ | - Vulnerable: | - Receiving | - Mode of transfer | | elderly, peds, | personnel: who? | | | etc. | Ability to manage | - Receiving | | | the pt | organization is | | - SDOH | | able to manage | | | - Qualifications | client | | - Support systems | | | | | - Adequate staffing | - The right client | | - Capacity: to make | | in the right | | decisions | - Part of | place at the | | | collaboration | right time? | | - Burden of illness | related to | | | | transfer | | | - Mobility: ability | | | | to get to appts | | | | and carry out tx | | | +-----------------------+-----------------------+-----------------------+ **Providing safer care transitions** - Beneficial interventions: - Standardizing documentation and agreeing on which information should be included in referral and discharge documents - Discharge planning with agreed criteria and protocols - Improving the quality and timeliness of discharge documentation - Improving the effectiveness and timeliness of clinical handovers between clinicians - Implementing effective medication reconciliation practices - Conducting timely and appropriate pt follow ups, including telephone calls and home visits - Educating and supporting patients, families and carers - Assigning care coordinators (core nurses) or case managers to people with complex needs - Establishing primary care hotline to hospital ED - Increasing the involvement of primary care physicians and nurse practitioner **Common causes of readmission** - Adverse drug events - Therapeutic errors - Infections - Diagnostic errors - Procedural complaints **Medication reconciliation** - Medications including reasons for starting meds, altering meds, stopping meds - Dose, route, proposed duration of medication tx - \>40% of medication errors result from inadequate reconciliation in handoffs during hospital admission, transfer and discharge **Follow up plan** - What's next? - When to see PCP and/or other specialists - Outpatient investigations to be completed - Specific instructions **Need for transition support** - Family has to coordinate care in a new and fragmented system - Various system models in adult care (in comparison to pediatric care) - Inc demand for treating children with complex care that adult care practitioner hasn't been trained to do - Inc anxiety for care providers and pts **Core principles of transition planning** - Start early - Individualized planning - Provide support before transition - Ensure ongoing support **Start transition planning early** - Regularly assess transition readiness of pt and caregivers - Ensure adequate dedicated time to the transition process - Understand youth's potential and goals for activity, education, recreation, and vocation - Beginning at 12-14 is ideal -- to be knowledgeable of their own care - Start transition slowly - Good time to make connection with family care provider around 14 y/o - Still maintain pediatric care but also have family HCP - 17 years old is good for specialists **Create an individualized transition plan** - Identify a transition 'champion' - Identify key multidisciplinary clinicians as well as primary care - Solicit care needs from youth and parents/caregivers - Address gaps in youth preparedness, autonomy and confidence - Develop a transition plan - Comprehensive medical summary and anticipatory guidance - Complete a transition readiness checklist - Review and update the transition plan regularly - Provide developmentally appropriate care and support **Provide support before transition** - Provide education and peer support for youth and caregivers - Support youth with a stepwise approach to increasing independence in care management - Create a comprehensive health transfer summary based on youth and caregiver priorities - Include strengths, hopes, considerations re QoL - Provide summary to youth and clinicians - My health 3 sentence summary - My age, diagnosis and brief medical history - My tx plan is - My question/concern to talk about during this visit **Provide support before transition: connection to primary care provider** - Have a nurse find you a doctor or NP through health care connect - However, joining health care connect does not guarantee that: - A family HCP will be found for. You -- those who need urgent care will be placed with a family HCP first - One family HCP can take your whole family **Provide support before transition: funding transition and future planning** - Government funding - Developmental Services Ontario DSO - Ontario Disability Support Program -- ODSP - Private funding options - Registered disability savings plan -- - Henson trust **Provide support before transition: Overlap in care** - Initiate referrals prior to the 18^th^ birthday -- starting early is KEY to reduce shock for pt and families - Build capacity in adult care providers for childhood onset conditions - Early introduction to the adult system - Adult care is focused on independent and assuming care of personal conditions - Ensure connection to care - Supports continuity and collaborative practice **Ensure Ongoing support AFTER transition** - Ensure youth attend appts - Assess youth's attachment to adult services - Continue to involve caregivers as per youth's wishes, with gradual weaning over time - Measure outcomes routinely **The take home on transition to adult care** - Start early - Overlap in care - Individualized transition planning - Capacity building and self-directed care - Build connections in the adult system - Ensure primary care provider connection - Medical summary and anticipatory future needs - i.e. having children, etc. - considering what they need when growing up or down the line **Summary/Key Points: Recommendations to Improve Transition to Adult Care for Youth with Complex Health Needs** - **Youth with Complex Health Needs**: Require specialized physical, developmental, and/or mental health services, transitioning from pediatric to adult care typically between ages 16-19 in Canada. - **Challenges in Transition**: - Fragmentation of pediatric and adult care services disrupts continuity, risking poor health outcomes. - Youth face multiple challenges, including physical, psychosocial, and developmental changes. - Conditions such as diabetes, cystic fibrosis, congenital heart disease, and organ transplants see worsened outcomes post-transition. - Gaps in care during transition lead to patient disengagement, poor treatment adherence, and increased hospitalization. - **Core Transition Planning Principles**: - **Start Early**: Assess readiness regularly; involve patients and caregivers in discussions. - **Create Individual Plans**: Appoint a transition \"champion\"; involve multidisciplinary teams. - **Pre-transition Support**: Provide education and peer support; prepare transfer summaries. - **Post-transition Support**: Ensure continued care, measure outcomes, and maintain family involvement if necessary. - **Barriers**: - Limited evidence for effective transition interventions, especially for youth with medical complexity or technology dependence. - Lack of integration between pediatric and adult services, especially for primary care providers, who often feel unprepared for the complexity of care needed. - Disparities for youth from rural or marginalized communities. - **Recommendations**: - **Continuous and Coordinated Care**: Ensure care is integrated, involving both pediatric and adult health teams. - **Flexible Age Cut-offs**: Tailor transition timing to individual development and capacity rather than chronological age. - **Collaboration**: Pediatric and adult care providers should develop joint strategies for smoother transitions. - **Quality Indicators**: Redefine indicators to better track improvements in care and outcomes for youth with complex needs. - **Training**: Build specialized training and education for providers across different settings to handle transitional care. - **Flexible Funding**: Advocate for adaptable funding models that support shared care during the transition phase. This summary highlights the key points and recommendations for improving the transition process for youth with complex health care needs. **[Week 4 -- Uncertainty in the setting of persistent and complex illness ]** **Purpose of uncertainty in illness theory** - helps measure the degree to which and individual is experiencing uncertainty during illness or an acute injury - the illness causes uncertainty that spreads into the individual's life and breaks down the individual's point of view and reality. Slowly a new point of view is formed - Uncertainty is the driving force and is accepted as reality. Now the individual may see that many options are possible as opposed to only a cause-and-effect paradigm. +-----------------------+-----------------------+-----------------------+ | **Antecedents** | **Appraisal of | **Coping with | | | uncertainty** | uncertainty** | +=======================+=======================+=======================+ | - Things that cause | - Pt driven -- how | - Coping mechanisms | | initial shock: | do they determine | to protect | | symptom pattern, | if uncertainty is | themselves or to | | event familiarity | a threat or | move forward | | or lack of | opportunity? | | | congruency, exp | | - Different | | diff symptoms | - Pts will use | mechanisms used | | than the first | their past exp to | based on | | onset of illness | assess the | appraisal | | | current situation | | | - Cognitive | | **Danger** | | capacities | - Pts will attempt | | | | to use coping | - Seeking info | | - Structure | strategies to | | | providers -- info | deal with | - Maintaining | | as received from | uncertainty | vigilance | | credible | (dangerous) | | | authorities and | | - Taking action | | HCPs, social | - If it's an | | | supports and | opportunity, they | **Buffering** | | education | may want to use | | | | strategies that | - Avoidance | | - Uncertainty is | maintain | | | growing - | uncertainty | - Selective | | dependent on | | ignoring | | above | - Ex: pt diagnosd | (typically males) | | | with cancer, | | | - What is the pt's | don't want to | - Neutralizing | | ability to | know the tx | threatening info | | understand the | options, or the | | | info? What | prognosis, or | important for nurses | | supports do they | talk to others -- | to pick up on how the | | have? | ignorance is | pt is coping, so we | | | bliss | know how to support | | - As nurses -- our | | them | | ability to | Other pts will be | | | influence how the | the opposite and | - After the | | pt interprets the | want to know | mechanisms | | illness/symptoms | everything | adaptation pt | | they exp, can | | adjusts to the | | help them more | - That is to say | new experience | | accurately | all this | | | predict and | dependent on the | - Adaptation to the | | understand their | pt and how they | initial | | needs for | appraise the | uncertainty | | education, | situation | | | support, and how | | - They start | | to reduce the | | thinking about | | uncertainty they | | the immediate and | | exp | | long term things | | | | | | | | - Adaptation | | | | involves | | | | biological, | | | | psychological and | | | | social factors | +-----------------------+-----------------------+-----------------------+ **\ ** A diagram of a process Description automatically generated with medium confidence - **Original theory --** doesn't account for lasting change OT - Looks at the initial presentation and that specific uncertainty - When you look at uncertainty in healthcare it is usually ongoing (int or chronic) - **Reconceptualized theory --** looks at uncertainty and coping OT - Self organization -- continuous integration of uncertainty that leads to a new normal - Probabilistic thinking -- belief in word where one accepts things that aren't always predictable - End up with formulation of new life perspective - Look at the pt holistically -- include their whole healthcare journey starting from birth **Underlying Factors** - Pt is trying to return to previous level of function - Driving force: I just want to get better and feel well - Underlying factors that contribute to uncertainty: - Complexity - Unpredictability - Lack of information - Ambiguity - Mishel's uncertainty scale is made up of 33 items covering aspects of the four factors - Subjective scale - Where is the pt on this scale? - The scale will identify gaps/need for resources/ support from nurses - Allows pt to put forth the info of how they're feeling without us asking every little thing **Patient and Family Perspective** - When caring for pt, it's not just the individual - Family centered care **Uncertainty in persistent and complex illness** - Individuals living with chronic/acute on chronic illnesses may experience uncertainty when: - The cause of disease is unknown - Disease progression is unknown - When symptoms fluctuate or are unpredictable - When there is lack of knowledge about treatment options and outcomes **What is already known about uncertainty?** - Patients with life-limiting illness commonly experience considerable uncertainty, yet uncertainty is under-researched in the context of life-limiting illness - Uncertainty influences pt experience as it affects patient/family information needs, preferences and future priorities for care - Much of this uncertainty cannot be eliminated, yet clinicians are often reluctant to discuss uncertainty with their patients - If poorly addressed uncertainty can result in poorer psychological outcomes for patients and increase use of health care resources - It's okay to say idk to your pts - We may not be able to predict everything - Cannot remove uncertainty **Patient in waiting** - Increasingly sophisticated screening techniques can make anyone a patient - We can feel well and be asymp. But always be aware of the potential for becoming symptomatic - Being at risk creates new identity -- an uncertain status of no longer being healthy but not really being sick **Assessment** - Diagnosis may cause anxiety, hopelessness, emotional distress **Interventions** - What can we teach? - Don't try to change their perception of uncertainty - If it is positive support that - If it is a danger then we assess how best to support that - Interventions may not always help everyone - Depends on how receptive that pt is - Emotional support -- assess their thoughts and beliefs regarding disease - Assess if we need social work, palliative care, chapel support **Outcomes** - Did anything change? - Psychologically -- is it better? Are they coping? Do they feel emotionally better? - Have they returned to a new level of function? -- it may not be possible to return to previous level, but have they adapted to a new normal? This would confirm proof of coping - Re-eval of uncertainty -- have we decreased any uncertainty? (even if its miniscule) **Nursing metaparadigm** - Person -- how does the individual, and their family cope with the uncertainty of new or chronic illness? - The person experiences uncertainty gradually, beginning as the illness insidiously invades life - Questioning one's self as the body changes with progression of illness, and how this will change their interpersonal relationships is common in uncertainty - Uncertainty in illness theory helps to address this effect on the pt and assist with coping mechanisms - Health -- how does the uncertainty impact a person's health? Mental health, physical health, emotional health, spiritual health, financial health? - Uncertainty in illness has been researched primarily in the hospital setting - Illness affects many aspects of life (physical, mental, emotional, spiritual, financial) - It is important to identify what the pt's perception of their own health is - Nursing -- nurses can offer credible information and facilitate adaptation in this model - Offering person centered care, FCC, sharing info can reduce stress in pts and caregivers - Giving information can allow pt to be in control - Nurses can assist the pt by constructing a personal scenario for illness which includes: - Why or how the illness began - How it will progress - How the pt can recover - Incorporating the uncertainty is an approach where there is a change in the pt's and family's perspective in life, away from an orientation to control and predict towards an acceptance of unpredictability and uncertainty as normal - Help the pt makes sense of what is happening - Help pt learn how to live with uncertainty -- this is valuable - Environment -- the milieu that a patient exists in has a great impact on their uncertainty - How does the pt feel about the environment? - By using Mishel's Uncertainty in Illness Scale (MUIS) tool nurses can identify the areas of illness that are causing the greatest uncertainty - Addressing these areas and assisting the pt to build better coping mechanisms will improve the pt's health during times of illness **Process of recognizing uncertainty** - For nurses, recognizing uncertainty involves the processes of assessing, reflecting, questioning, and/or being unable to predict aspects of the pt situation - Some uncertainty related to future illness cannot be avoided. It is imperative that nurses understand how patients cope with uncertainty and how it affects their support needs and preferences for communication - For some, disease complexity, poor information provision and the unpredictability or ambiguity of events interfere with patients' ability to confer meaning, thereby increasing uncertainty - Uncertainty is not always negative -- some patients may find prognostic uncertainty protective, which others find not knowing distressing - When assessing a pt: - What are all the contributing factors? - Ask the patient questions related to them -- avoid dumping a bunch of information - Don't be afraid to say I don't know - Determine how your patient is coping so you know how best to assist them **Implications for Practice** - When managing patients with advances illness and an uncertain prognosis, professionals should realize that uncertainty is often a central feature of patients' illness experience - Nurses should consider an individual patient's preferences in terms of temporal focus, information needs and engagement with illness - Tailor discussions with patients so that patients' priorities are addressed, and information and support are provided according to their preferences - Quality vs. quantity - Better understanding and communication around uncertainty in the clinical setting can improve information provision, help to engage and empower patients and facilitate patient-centered care - Understand the patient perspective in health care - Having them wait in the ER for hours can increase anxiety due to uncertainty and lack of communication from HCP - More is not always better **Summary of article: How nurses influence the patient experience** - Nurses, who have the largest presence in hospitals, influence patient outcomes through direct care, interprofessional collaboration, and participation in initiatives aimed at enhancing patient safety and satisfaction. **Key patient experience categories that nurses affect include:** 1. **Courtesy and Respect**: Patients perceive nurses based on their attitudes and behaviors, such as friendliness and compassion. 2. **Care Coordination**: Nurses are crucial in ensuring care plans reflect patient and family preferences and that communication is smooth between the care team and the patient. 3. **Careful Listening**: Nurses must listen attentively to patients' concerns, even in chaotic environments. 4. **Patient Education**: Nurses are responsible for providing education and ensuring patients understand their health care instructions, accounting for health literacy. 5. **Patient-Centered Care**: Nurses play a vital role in making patients feel involved in their care. 6. **Responsiveness**: Nurses are measured on their promptness and attentiveness to patient needs. 7. **Safety**: Nurses ensure patients feel safe through clear communication and adherence to safety protocols. 8. **Service Recovery**: Nurses handle complaints and concerns, emphasizing clear communication and resolution. - The article also emphasizes the importance of best practices like bedside shift reports, nurse leader rounding, and purposeful interval rounding, collectively known as the \"nursing bundle.\" These practices are proven to improve patient perceptions and the overall human experience in health care. Nurses are encouraged to consistently implement these strategies to ensure high-quality care and patient satisfaction. **Summary of article: A concept analysis of family caregivers' uncertainty of patient's illness** **Key Findings:** 1. **Attributes of Family Caregivers\' Uncertainty:** - **Illness probability: Uncertainty about the likelihood of the illness and its trajectory.** - **Caregivers\' perception of the illness: Their ability to process information about the patient\'s illness.** 2. **Antecedents of Uncertainty:** - **Characteristics of the patient's illness.** - **Family caregivers' cognitive capacity and lack of information or support.** - **Family responsibilities and roles in caregiving.** 3. **Consequences of Uncertainty:** - **Emotional outcomes: Stress, fear, and sadness.** - **Psychological outcomes: Anxiety, depression, and distress.** - **Financial outcomes: Short-term and long-term financial strain.** **Cases to Illustrate the Concept:** - **Model Case:** Demonstrates full attributes of uncertainty (fear, confusion). - **Borderline Case:** Shows partial uncertainty (initial uncertainty resolved by provided information). - **Related Case:** Similar concept but focused on the burden of new caregiving roles, not uncertainty. - **Contrary Case:** Demonstrates none of the defining attributes of uncertainty. **Measurement Tools:** - Mishel Uncertainty in Illness Scale-Family Member (PPUS-FM) to measure uncertainty. - Hospital Anxiety and Depression Scale (HADS) for psychological outcomes. **Limitations:** - Focused only on family caregivers of adult patients. - Excluded perspectives from other disciplines (e.g., psychology, sociology). - Didn\'t address uncertainty among caregivers of pediatric patients or non-caregivers in public health crises like COVID-19. **Conclusion:** - Family caregiver uncertainty is an important consideration in patient care. - Differentiating uncertainty between patients and caregivers can aid in providing family-centered care