Week 5 Flashcards
what is caregiving
- providing unpaid support to family members or friends who have physical, emotional, or practical needs d/t an illness, disability, or aging
a pt’s ability to be cared for and die at home is heavily dependent upon…
- the efforts of family caregivers
describe caregiving in canada (5)
- 8.1 mil family caregivers
- provide 66.5 bil worth of care/year –> “invisible providers”
- 80% of all care at home is provided by fam caregivers
- principle source of support for pts who are dying at home
- need for family caregivers will increase dramatically in the coming years
why will the need for family caregivers will increase dramatically in the coming years because… (4)
- population is aging
- longevity is increased
- those w chronic illnesses are living longer and have increasingly complex health care needs
- formal health care system is overwhelmed
what is the caregiver recognition act (2)
- MB legislation passed in June 2011
- purpose is to acknowledge vital role of caregivers & set up general principles for gvmt agencies to better support caregivers
how effective has the caregiver recognition act been (2)
- other than designating 1st Tues of every April as caregiver recognition day in MB
- no tangible actions taken to increase caregiver experiences
palliative care is…
- an approach that improves the QOL of pts and their families (!!!) facing the problems associated w life-threatening illness, thru the prevention and relief of suffering by means of early id and impeccable assessment, and treatment of pain and other problems - phys, psychosocial, and spiritual
what is caregiver-centered care
- care that values caregiver as central
- outlines 6 competencies
what are the 6 competencies of caregiver centered care
- recognize the caregiver role
- communicate with family caregivers
- partnering w family caregivers
- fostering resilience w family caregivers
- navigate health and social systems and accessing resources
- enhancing the culture and context of care
describe the competency of “recognizing the caregiver role”
- be aware of & identify their role and responsibilities
describe the competency of “communicating w family members” (4)
- communicate in a matter than demonstrates respect, empathy, and compassion
- listen actively
- provide timely info in ways they can understand
- consistent documentation & info
describe the “partnering w family caregivers” competency (5)
- directed by our attitude towards them (some HCP annoyed or ignore them)
- understand benefits of including them on care team
- do WITH caregivers as essential partners in care
- value their knowledge of pt
- include them in assessments and care planning
describe the “fostering resilience in family caregivers” competency
- identify & assess their needs r/t their ability to provide care and maintain their own health & wellbeing
describe the “navigating health & social systems and accessing resources” competency (3)
- work together to collab to access applicable supports in timely manner
- communicate w and make referals to other providers in accordance w family caregiver’s needs & preferences
- work together to overcome barriers to access services & supports
describe the “enhancing the culture & context of care” competency
- recognize that care & caregiving are effected by societal views
ex. consider how ageism may effect our caregiver’s experiences
who are caregivers? (7)
- 54% women, 46% men
- ~25% are >65 yo
- ~70% are >45
- sandwich generation
- most commonly family relationship
- may be friend or neighbor
- most likely to be retired (but often not)
what is the “sandwich generation”
- generation who provides care for their parents and children at same time
what stresses can be associated w caregiving (3)``
- physical
- psychosocial
- financial
(but dont make assumptions)
describe how the time commitment and intensity of caregiving changes in a chronic progressive illness (2)
- caregiving experience is fundamentally uncertain
- time commitment and intensity increases at end of life
why does time commitment and intensity of caregiving increase at the end of life (2)
- distressing symptoms
- pt becomes more functionally, and sometimes cognitively, impaired
what caregiver feelings are common in caregiving for someone w a chronic progressive illness (6)
- helplessness
- vulnerability
- uncertainty (r/t unpredictable trajectory)
- feel ill-prepared
- pressured to provide care
- uncertain abt their abilities
what are 3 aspects of caregiving
- family effect
- caregiving responsibilities
- self-care
what is family effect and what does it describe (3)
- states that merely having a family member living w a chronic progressive illness will have impact those around them
- family also experiences loss, grief, uncertainty abt future, what things will look like as disease unfolds and after they pass
- family has to also deal w own emotions and responses to having a family member who is ill
what are some of the responsibilities of caregivers (9)
- managing symptoms (ex. constipation)
- domestic chores & household tasks
- personal care
- assisting w ADLs
- emotional and social support
- be a spokesperson, advocate, proxy decision maker for them
- coordinate all aspects of their care v
- develop new skills
- acquire lrg amts of new info in short amt of time
describe caregiver self-care (7)
- caregiving = disruption in own routines & restrictions on time and energy to engage in activities they usully do
- social isolation common
- cease activites outside of home
- may stop attending community activities they normally are part of for companionship & social support
- signif fatigue , sleep deprivation
- postpone own health & wellbeing, medical appts
- may find it difficult to find time to engage in activities that increase their health (exercise, eating well, etc.)
- notorious for prioritizing needs of the pt at the expense of their own needs
describe the psychosocial burden associated w caregiving (5)
- sense of disruption in “normal life”
- social isolation common
- obtaining support hampered by the fact that many family members do not identify themselves as legitimate recipients of help; focus instead on dying person
- high psychological stress
- cease activities outside of the home
what emotional stressors are associated w caregiving (5)
- vivid awareness of impending death
- face uncertain future
- grieve successive losses
- high anxiety lvls
- experience depression
describe the physical burden associated w caregiving (4)
- long hours of provision of care = signif fatigue
- sleep deprivation
- improper nutrition
- postpone their own medical appts
describe the financial burden associated w caregiving (3)
- many caregivers quit working or reduce their hours
- where benefits are available, difficulty in negotiating the system
- limited paid leave or job security if take time off work
what some issues associated w Canada’s Compassionate Care Benefit (3)
- limitations of benefit
- strict eligibility
- short duration of assistance
despite feeling overwhelmed, many family caregivers report… (6)
- caregiving as life-enriching
- derive signif benefits
- sense of accomplishments
- belief that they are able to give something back to the indiv
- allows them to spend intimate times together
- share final moments together that are meaningful
what are some motivators for pt’s desire for care at home (2)
- more familiar enviro
- poor experiences w acute care
`what factors impact caregiving experience? (6)
- age
- culture
- family dynamics
- reasons for taking on role
- view of role within large system
- preferences for location of care
can impact (+) or (-)
describe how age can impact caregiving experience (5)
- if older adult, may not be able to support as much physically & own chronic condition
- retired vs still working or in school
- consider developmental stage
- impacts coping mechanisms
- have different life demands
describe how culture can impact caregiving experiences (4)
different expectations:
- who should take care of them
- is it their “duty”
- attitude towards older adults
- voluntary vs obligated
describe how family dynamics can impact caregiving experience (3)
- pre-existing tension = more challenging
- disagreements between children r/t who should be caregiver
- good vs poor communication
describe how the reasons for taking on a caregiving role can impact caregiving experience (2)
- voluntary vs obligated
- some make promises to providing care at home out of a sense of duty, love, and obligation
describe the view of role within larger system can impact caregiving experience (2)
- if they feel like they are an essential part of the healthcare team
- vs if feel like a burden
describe how preferences for location of care can impact caregiving experience
- pt may want to be at home, but the caregiver may have individual needs that make it difficult
what factor plays a main role in health outcomes of the caregiver
- caregiving does not = poor health outcomes
- main factor is how caregivers cope w their role and how they appraise and perceive the situation
review chart from previous week
describe assessment of family caregivers (2)
- whole person approach
- recognize that they may be impacted & have needs in any 4 domains
what is used to assess caregiver needs
- carer support needs assessment tool (CSNAT(
what is the CSNAT (4)
- tool used in the caregiver centered approach
- not a checklist, way to guide convo
- represents 14 domains of support needs
- 7 focus on need that will enable to carer to provide care
- 7 focus on direct support for carers
what are the benefits of using the CSNAT
- provides visiibility abt area of support the caregiver need
- often dont know what they dont know
list the 7 domains of the CSNAT under the “enabling carers to care” category
- knowing who to contact when concerned
- understanding the pt illness
- knowing what to expect in the future
- managing symptoms & giving meds
- talking to pt about their illness
- equipment to help care for pt
- providing personal care to pt
list the 7 domains of the CSNAT under the “direct support for carers” category
- own physical health concerns
- dealing w their own feelings and worries
- beliefs or spiritual concerns
- practical help in the home
- financial, legal, work issues
- having time for themselves in the day
- overnight break from caring
what are the 5 stages of the CSNAT approach
- intro to CSNAT
- carer consideration of needs
- assessment convo
- shared action plan
- shared review
when should the CSNAT be initiated and used? why is this imp?
- initiate early
- re-visit regularly & as situation changes
- imp to check in voluntarly & regularly to demonstrate care & understand there needs and if theyve changes
what are the take home messages r/t caregiver assessment (6)
- do not make assumptions
- engage in conversation w family caregivers
- acknowledge family caregivers
- genuinely listen
- do with family caregivers
- check in w family caregivers regularly and voluntarly
describe the importance of not making assumptions abt caregivers (3)
- do not assume they are under only (-) stresss
- do not assume their needs
- do not make assumptions abt their experiences
describe the importance of engaging in convo w family caregivers (5)
- get to know them
- use whole person approach
- learn how illness is impacting them & their needs
- listen to their story
- ask open ended questions
what is meant by “do with caregivers”(3)
- partner with them , not “do to” or “for them”
- find out what they need
- value what you know abt them
what should you not say to caregivers? why?
- “you need to take care of yourself”
- they know they need to, may be offensive, not helpful
what are some questions to guide care/assessment for the caregiver (6)
- what does the caregiver view as benefits to self-care?
- what does the caregiver identify as barrier to self-care?
- how confident is the caregiver that they can overcome these barriers?
- what kind of self-care activities does the caregiver enjoy?
- who will support the caregiver to engage in these activities?
- where is an attractive, safe place to engage in these activities?
what are some appropriate supportive resources for caregivers (6)
- referals to approp colleagues (homecare, social work, spiritual care)
- disease specific resources (alzheimer society, CCMB pt & family support services)
- caregiving w confidence
- canadian virtual hospice
- carers canada
- employment insurance caregiving benefits
what EI caregiving benefits are available for caregivers (3)
- family caregiver benefit for children (max 35 weeks)
- family caregiver benefit for adults (max 15 weeks)
- compassionate care benefits (max 26 weeks)
what is imp to consider regarding approp supportive resources
- need to be matched and individualized to their needs
what should caregivers know abt stress (4)
- there are warning signs
- various sources of stress
- things you can and cannot change –> focus on the things you can
- there are things we can do to reduce stress
what are some warning signs of stress (4)
- irritability
- sleep problems
- weeping
- changes to appetite
