Patient Experience Flashcards
What is the definition of a carer?
A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support.
The care they give is unpaid.
What are the challenges of living with heart failure for the patient and the carer/partner?
- Biographical disruption - adapting to heart failure.
- Psychosocial - anxiety and depression.
- Multiple health conditions.
- Changing roles - carers and the impact on relationships.
- Cultural or language difficulties.
- Quality of life - patient perception / definition.
- Uncertainty of illness timeline.
- Frequent rehospitalisation - 40% of patients readmitted within 6 months of discharge after an acute event.
- People with established heart failure who need hospitalisation for acute episodes have high mortality rates - 1 in 6 patients die during admission / or within 30 days after discharge.
- Managing disease - changes in symptoms, complex multiple medication, financial.
What are the challenges for the carer/partner of a patient with heart failure?
- Strain and burden - contribute to poorer physical and psychological health, choice of taking on role, poorer QOL.
- Compassion fatigue - stress connected with exposure to suffering.
- Grief and loss - previous relationship, aspirations for self and person with illness.
What factors influence illness behaviour?
- Married - tend to be healthier; access services more.
- Gender - females are more likely to access services more; “self-protective”.
- Race / ethnicity.
- Increasing age.
- What is their normal?
- Education / learning / socialisation.
- Past experiences; can have a positive and negative impact.
- Values / beliefs / fears
- Illness perceptions:
- Cardiac disease - CABG; beliefs pre-surgery influence recovery from surgery.
- Hypertension - illness perceptions can enhance controllability of medication.
What are the theoretical underpinnings of chronic illness?
- Biographical disruption
- Common sense model of illness perception
- Coping mechanisms
- Health-related quality of life
Outline the biographical disruption model of chronic illnes, as described by Bury (1982).
- Onset of problem and recognition; disruption of taken for granted assumptions.
- Emerging disability and uncertainty; re-adjusting perspective of person’s biograpgy / self-concept.
- Chronic illness and mobilisation of resources - in facing new biography in the present and future.
Describe the model by Levanthal (2012) of how patients view their illness.
- Identity of illness - symptoms and understanding of illness.
- Timeline - understanding of duration and how illness will progress.
- Causes / perception - what they understand about cause of illness.
- Consequences - the impact of the illness.
- Controllability - can the illness be cured, or controlled?
= formulation of patient’s perceptions which then guide coping and influence choices made.
Outline the coping model as described by Lazarus and Folkman.
- Involves person and environment and the relationship between the two.
What is health-related quality of life?
Health-related quality of life is the extent to which one’s usual or expected physical, emotional and social wellbeing are affected by a medical condition or its treatment.
What are the specific areas which have been identified as problematic when facing health care professionals?
- Differences in perceptions (how illness is framed) can lead to difficulties in treating the patient and influence adherence.
- Communication with the patients - explaining diagnosis and prognosis, terminology (heart failure), trying to balance honestly and building a trusting relationship with patient / family.
- Communication within the team - needs to be clear and consistent, liase with required members of the team, other specialists expertise in relation to co-morbidities.
Describe Ley’s model of adherence.
What is the effect of HCP’s understanding of illness experience?
- More appropriate care delivered.
- Chronic illness and quality of life - key problems for patient / family / carers:
- Prevention / management of crisis
- Control symptoms
- Carry out / adhere to medical regimes
- Prevention / living with isolation
- Adjustment to disease changes
- Normalise lifestyle / interaction
- Finance
- Addressing psychological / marital / social / family role changes
Define self management.
- The care taken by individual towards their own health and wellbeing.
- It is comprised of the actions they take to lead a healthy lifestye; to meet their social, emotional and psychlogical needs; to care for their long-term condition and to prevent further illness or accidents.
What are the important factors of self management?
- Managing a disease within everyday life.
- Dynamic / complex process requiring continual evaluation, changes over time / balancing act.
- Assimilate the process and what is required of them in stages.
- Management of behaviours / outcomes differ.
- Interventions may target certain risk / protective factors; can target individuals or families or both.
- Providers point of view - prognosis vs patient / family point of view; burden perception.
- Cultural influences.
- Caregivers can be influenced by management experience and influences outcomes for both caregiver and patient.
What are the 4 pillars of self-management?
- Patient education
- Lifestyle changes - motivational interviewing
- Living with uncertainty
- Changes in priorities over time - comorbidities, physical, psycho-social
Describe the interplay between self and family management, risk and protective factors and outcomes for a patient with heart failure.
