Rationalizing Norms of Care Provision in Home-Based Dementia Care: A Critical Analysis

Rationalizing Norms of Care Provision Rationalizing Norms of Care Provision in Home-Based Dementia Care:in Home-Based Dementia Care:

A Critical AnalysisA Critical Analysis

Canadian Public Health Association 2008 annual Conference, Public Health in Canada:

Reducing Health Inequalities through Evidence and Action

June 2, 2008

Research TeamResearch Team

Principal Investigator:C. Ward-Griffin, RN, PhD

Co-Investigators:Carol McWilliam, RN, MScN, EDDorothy Forbes, RN, PhDMarita Klosek, PhDNancy Bol, RN, MScNJanyth Mowatt, RN, MScN

Research Trainees:Abe Oudshoorn (2006-2007)Kristie Clarke (2006-2007)Oona St-Amant (2006-2008)Ryan De Forge (2007-2008)

Funding: Alzheimer Society of Canada, CNF, CHSRF, CIHR (Institutes of Aging, Gender, Sex & Health)

PurposePurposeTo critically examine client-caregiver-provider

relationships in home-based dementia care

Research QuestionsResearch Questions To acquire in-depth information about the relationship

experiences of clients, family caregivers and home health providers involved in dementia care

To identify contextual factors that influence the formation and negotiation of these relationships

To identify conditions that support and strengthen these relationships

To identify potential changes needed in home care services, policy and program delivery in dementia care

Research MethodsResearch MethodsPurposive Sampling:

Recruited clients receiving dementia care from CCAC or home care provider agencies

Dementia care networks consisting of one client, one or more family caregivers, one or more home care providers, one case manager

Critical Ethnography:1-2 separate in-depth interviews with clients, family

members and home care providers

Participant observation of interactions

Field visits approximately three to nine months apart

Sample: Clients (n=9)Sample: Clients (n=9)Average Age: 83.3 years4 males & 5 females (2 deceased since recruitment)Average personal income: $20,000-$39,999Residence: 6 urban, 3 rural Majority:

• Canadian

• English speaking

• Married

• Secondary education

• Retired

SampleSample:: Family Members (n=25) Family Members (n=25)

Average Age: 57.2 yearsAverage personal income: $40,000-$59, 9991-7 caregivers in network (spousal/adult children)Female: Male Ratio (2.5:1) Majority:

• Canadian• English speaking• Married• Secondary education• Employed full time

Sample: Providers (n=12) Sample: Providers (n=12) Provider: all PSWsAverage Age: 52.6 yearsAverage personal income: $20,000-$39,9991-3 providers per networkFemale: Male ratio (5:1)Majority:

• Canadian• English speaking• Married• Secondary education• Part time employment (30+ hours/week)

Negotiating Relationships in Home-Based Dementia CareNegotiating Relationships in Home-Based Dementia Care

Values of Care


Values of Care

Making Decisions

about Care


Values of Care

Making Decisions

about Care

Evaluating Care

Practices


Values of Care

Making Decisions

about Care

Evaluating Care

Practices

Managing Resources for Care


Values of Care

Making Decisions

about Care

Evaluating Care

Practices


Rationalizing Norms of Care

Provision


Values of Care

Making Decisions

about Care

Evaluating Care

Practices



Provision


Values of Care

Setting Boundaries

Making Decisions

about Care

Evaluating Care

Practices



Provision


Values of Care

Forming Alliances

Making Decisions

about Care

Evaluating Care

Practices



Provision


Values of Care

Forming Alliances

Setting Boundaries

Making Decisions

about Care

Evaluating Care

Practices



Provision


Values of Care

Forming Alliances

Setting Boundaries

Making Decisions

about Care

Evaluating Care

Practices



Provision


Values of Care

Forming Alliances

Setting Boundaries

Making Decisions

about Care

Evaluating Care

Practices



Provision

Rationalizing Norms of Care ProvisionRationalizing Norms of Care Provision

Norms of care are those taken-for-granted “rules” that govern and reify dementia care

Most often these “rules” are unwritten but clearly understood (e.g. teach and reduce)

These norms may be written policies (e.g. family members are expected to be “involved” in home care)

Individuals within home care (clients, families and providers) co-construct and reinforce norms of familial care (e.g. “families take care of their own”) and formal care (e.g. unable to provide certain types of care)

Network 1Network 1

PSW(Mark)

(1957)

FamilyPhysician

Thomas(client)

(1932)

Melanie(caregiver)

(1936)

Married 47 Yrs

Day Care Program

Darren Jessica(1959)

Katie(1963)

George(1966)

Trisha

Case Manager

James

Caregiver (George)Caregiver (George)

Mom wasn’t getting much help…they didn’t give much help at all for her after her heart attack. She was

supposed to look after my father, look after herself and function around the apartment, to do everything after

being in the hospital for less than a week and having had a heart attack. It was a ridiculous scenario. And It was impossible for me to be there, going through what I was going through [divorce]. So my sister uh, jumped on a

plane and came out here and was going to stay here for two weeks, but then a week after she was here or less, she got a phone call saying that her daughter may not live. But anyways, so she came in to help, but then a week later she had to leave. And then who’s left??My

mom’s left in the apartment [on her own].

In-Home Provider (Mark)In-Home Provider (Mark)

I don’t like my mom to get tired. That’s why every time I would see her [Melanie]… I say‘Are you

okay?’ ‘Oh…do you still have heavy things in the car? I will get them for you.’ Melanie and

Thomas have been together I think for more than 50 years...And as far as I can see… their attachment is

still the same as they were young…That’s why Melanie cares…patiently, compassionately… Just like yesterday, Thomas was incontinent in the

car...I did not see her get mad at Thomas… She is a very nice person.

Case ManagerCase Manager

Like the back up plan for these memory clients, there isn’t one. So I mean I think that’s how we can do it…four hours a week is what we’re going to do and do

whatever you can to make it. And helping out with the day programs... and in between the PSW goes in and

we get to go out there every six months if you’re lucky, you’d hear back from the agency and the

personal support worker or the spouse may call or a family member.

Implications/ConclusionsImplications/Conclusions

Critically examine taken-for granted assumptions/norms of familial care and formal home care. Who is being advantaged and/or disadvantaged?

Tailor the provision of care that will address the individual needs of clients and family members. How might we provide genuine family-centred care?

Change policies and practices to ones that promote the health of persons with dementia and their families. How is inequity being address?

Questions/CommentsQuestions/Comments

Rationalizing Norms of Care Provision in Home-Based Dementia Care: A Critical Analysis

Documents

home care services

dementia careto

provider relationships

home health providers

providers n

clients n

family caregivers

health inequalities