Transcript No Slide Title

RELATIONSHIP CENTERED CARE
DURING RELOCATION
Julie James
Resident Care Manager
Misericordia Health Centre
March 11, 2008
PREAMBLE
Objectives:
•introduction
•review of the literature
•research design and data collection
•data analysis and discussion
•conclusions
INTRODUCTION
•By 2026, 21 % of Canadians will be 65 and over
•better medical care (heart disease and cancer) contribute
to our increasing number and proportion of older people
•age is the single most significant risk factor for dementia
•Bond & Corner (2001) “from the perspective of public
policy, dementia is perceived as the modern epidemic of
later life”
Muller-Hergl (2002)
describes institutional care in nursing homes as
“negative containers at the end of the service chain”
Post (2001) The moral challenge of dementia
to develop “an ethics based on the essential unity of
human beings and on an assertion of equality despite
unlikeness of mind”
PERSON CENTERED CARE
A standing or status bestowed upon one human being, by
others, in the context of a relationship and social being.It
implies recognition, respect and trust. Both the according
of personhood and the failure to do so, have consequences
that are empirically tested. (Kitwood, 1997)
PERSON CENTERED CARE:
•extremely important contribution to raising the profile
and status of work in dementia
•instrumental in improving the quality of care for
people with dementia
Does the emphasis on individual outcomes come at
the expense of interdependencies?
RELATIONSHIP CENTERED CARE
•first coined by Tresolini and the Pew-Fetzer Task Force
(1994) following an extensive review of health care systems
in the U.S.
•authors felt that modern health care was based on an
individual, disease-oriented, subspecialty model that leads to
a focus on a cure at all costs, resulting in care that is
fragmented, episodic and unsatisfactory for both patients
and practitioners
•system is clearly not appropriate for the needs of most older
people, especially those with dementia
Relationship centered care:
•There is a need to ensure that an appropriate balance
between the needs of all involved in health care
relationships is achieved
•This balance is currently missing in person centered care
•The Senses Framework captures important dimensions
of relationship centered care and ensures a balance
between the needs of all participants within a caring
environment and culture
CONTEXT OF THE RESEARCH: SCU
•provide secure environments with specialized staff and
specialized programming to meet the cognitive, medical,
functional and behavioural needs of people with dementia
•no defined standard of a special care unit but they can
described as environments intentionally designed so that
cognitively impaired residents can enjoy the best possible
quality of life and independence within their limits
•variation in terms of whether or not physical limitations are
part of the exclusion criteria; whether or not difficult
behaviours are part of the inclusion or exclusion criteria
SPECIAL CARE UNIT
•36 bed unit situated within a large long term care facility
•original philosophy of “ageing in place” in 1988 but shift
needed to occur
•discharge criteria developed and implemented
•communication with individuals with dementia and their
families
RELOCATION
•Not uncommon for people with dementia
•Effects of relocation on people with dementia
•Effects of relocation on the family members of people
with dementia
LITERATURE REVIEW
•Family caregiving
•family caregiving during relocation both upon
admission as well as during intra- or inter- institutional
relocation post admission
•family-staff relationships
•relationship centered care
FAMILY CAREGIVING
•Families’ feelings of responsibility for both the physical
and psychological well-being of their loved one
continues, as does the provision of care
•families believe that high quality care is dependent upon
their loved one being “cared about” as well as “cared
for”
•staff do not always feel families appreciate the
constraints under which they operate
•not all staff are willing to negotiate the nature and
extent of family involvement, suggesting that there
involvement is not always welcomed
FAMILY CAREGIVING DURING RELOCATION
ADMISSION:
•many experience guilt or worry about their relative’s
welfare at time of placement
•reduction in role overload and role captivity; however, the
emotional strain of caregiving continues
•families relinquish control of their loved one’s care
without any clear expectations of what their involvement
in care could look like
•working in partnership, forging relationships, promoting
open communication……common theme in striving to
meet the goals of families
FAMILY CAREGIVING DURING RELOCATION
INTRA- & INTER-INSTITUTIONAL TRANSFER
•literature is very sparse…..both for residents and even
more so for their families
•morbidity and mortality rates not consistent in their
outcomes
•should not interpret these results to mean that relocation is
not stressful
FAMILY-STAFF RELATIONSHIPS
•A positive relationship is crucial to the concept of good
care
•Reciprocal relationships in which the expertise of carers
and their potential contribution to the quality of care is
valued…….each make unique contributions
•The expectation that staff at all levels build and maintain
supportive relationships with family members is becoming
increasingly explicit
RELATIONSHIP CENTERED CARE
•Person centered care does not “fully capture the
interdependencies and reciprocities that underpin caring
relationships” (Nolan, 2002) and is “inherently
individualistic” (Post, 2001)
•Caring within older age usually takes place within the
context of relationships characterized by lifelong
obligations and reciprocity (Pickard, 2000)
RESEARCH DESIGN & DATA COLLECTION
•Retrospective qualitative study
•Ethics approval
•Two groups of participants invited to participate
ETHICAL ISSUES
•Ethics approval was obtained from the university and
research access was granted by the LTC facility
•The cornerstone bio-ethical principles of beneficence
(doing good), nonmalficence (doing no harm), autonomy
(respect for persons), justice (fairness), fidelity (faithful),
and veracity (truth-telling) were all given due consideration
RELATIONAL ETHICS
•Emphasizes the ideas of attachment, caring and respect
(Flinders, 1992) and integrates well into the concept of
relationship-centered care
•Affirms individuals rather than objects and gives value to
each persons’ story
•relational views value collaborative efforts in contrast to
the power imbalance that can occur between researcher
and subject
PARTICIPANTS
•2 groups: family members and staff members
•selection criteria
•invitation to participate
DATA COLLECTION
•Semi-structured interviews with 7 family members: 5
spouses and 2 adult children. As only one of the spouses
was a husband, no distinction was made between husbands
and wives to maintain confidentiality. Both adult children
were daughters
•Person with dementia had been a resident on SCU ranging
from 3 to 8 years
DATA COLLECTION
•Semi-structured interviews with 7 formal caregivers:
registered nurses, registered psychiatric nurses and health
care aides
•work experience on SCU ranged from 3 to 20 years
LIMITATIONS OF THIS PHASE
•Numbers were too small to make any generalizations
•Research questions needed clarification
•In hindsight, collateral information from staff members
on the general personal care unit would have afforded an
opportunity to explore the experiences of family
members during relocation
DATA ANALYSIS
The data analysis and subsequent conclusions and
recommendations were dependent upon the
acknowledgement that lay knowledge is equal in worth to
other forms of knowledge.
THE SENSES FRAMEWORK
•has been developed over the last 20 years
•origins can be traced to work on the relationships
between family and professional carers and individuals in
need of help (including those with dementia)
•Nolan (1997) states care homes lack a sense of
therapeutic direction for staff and consequently success
was measured mainly in terms of “good geriatric care”
AKA tasks are done and residents are clean and tidy for
public display (Treeweek, 1994)
THE SENSES FRAMEWORK
•suggests a significant paradigm shift within an
approach that captures important subjective and
perceptual aspects of care that should be
experienced by both residents and staff if high
quality care is to be achieved
•captures the important dimensions of
interdependent relationships necessary to create and
sustain an enriched care environment where the
needs of all participants are acknowledged and
addressed
SENSE OF SECURITY
To feel safe and receive or deliver competent care
SENSE OF CONTINUITY
Recognition of biography, using the past to make sense
of the present, and help to plan the future; working within
a consistent team using an agreed philosophy of care
SENSE OF BELONGING
Having opportunities to form meaningful relationships
and to feel part of the community of the home, whether
as a resident, family member or a staff member
SENSE OF PURPOSE
To have opportunities to engage in purposeful activity,
or to have a clear set of goals to aim for
SENSE OF ACHIEVEMENT
To achieve meaningful or valued goals and to feel
satisfied with one’s efforts
SENSE OF SIGNIFICANCE
To feel that you, and what you do, matter, and that
you are valued as a person of worth
RESPONSES AND RECOMMENDATIONS
OF THE PARTICIPANTS
SENSE OF SECURITY
RESPONSES
•just want to keep them safe (F)
•thankful for the safety of this unit (F)
•concerned about some of the aggressive residents on SCU (F)
•rescuing them at a difficult point….now it needs to be there for
the next person (S)
•they remember our voices and faces…a comfort zone with our
routines (S)
•a lot of body language cues that people who work with them
understand (S)
SENSE OF SECURITY
RESPONSES
•I felt more comfortable they (SCU) were getting me what I
wanted when Dad got sick…it’s a trust issue (F)
•The one time he was ill, the nurses (PCH) picked it up right
away (F)
•I felt somewhere along the way, we had lost - like you (SCU)
knew what we expected but they didn’t seem to know (F)
•I was so worried about the transfer (fewer staff - it would be
terrible) but the she was far better off (on PCH) (F)
SENSE OF SECURITY
RECOMMENDATIONS
•Comprehensive transfer of information to new unit which
includes routines, preferences, communication strategies
(verbal and non-verbal), family members (including their
desired level of involvement
•Education for staff members on both the vision and
practical application of relationship centered care, including
an individualized care plan and the expectation of family
support
SENSE OF SECURITY
RECOMMENDATIONS
•Information for family members on the disease trajectory of
dementia, communication strategies and visiting tips for
enhancing their time with the resident with dementia
SENSE OF CONTINUITY
RESPONSES
•Not knowing what the other group of staff is like…it’s like
telling you to move out of your house overnight, pulling
things out at the roots at such short notice is really hard (S)
•Even if they don’t have relative lucidity and recognition of
staff that care for them regularly, transition still has an impact.
It’s not a check-off thing, familiarity (S).
•You trust the caregivers and once you trust them, then you
have to start all over again. Consistency is so important (F)
•The way they (PCH) did things was completely different (F)
SENSE OF CONTINUITY
RESPONSES
•It’s like a family and it hurts to leave family (F).
•Should be a definite protocol and follow-up service;
transition should be seamless - what if I wasn’t there
everyday (F)
•There’s an impact on the person with dementia but not
always - those who recognize surroundings and faces will
have a more difficult time (S)
•It’s an attachment for them, they lose that feeling of trust,
these people who would take care of their loved ones (S)
SENSE OF CONTINUITY
RECOMMENDATIONS
SCU:
•staff awareness of the importance of team integrity and
support of care planning surrounding relocation
•education of new staff on the disease trajectory of
dementia, purpose of the SCU, admission and discharge
criteria ensuring an awareness of the probability of
relocation
SENSE OF CONTINUITY
RECOMMENDATIONS
RECEIVING PCH UNIT
•assignment of a specific staff member to welcome the resident
and family
•formalized follow-up process to ensure concerns are addressed
•invitation to family members to participate in activities and
provide information regarding same
•involvement of the new social worker prior to relocation so
that support can occur prior, during and following relocation by
the same individual
SENSE OF BELONGING
RESPONSES
•It felt very alone….I felt very lonely (F)
•They felt a sense of abandonment in some way, like we’ve
done something bad to them (S)
•There’s a special bond when you have a condition like this,
a special bond with staff. And if staff is receptive and helps
you adjust then it’s hard to move and to think you have to go
through that again (F)
•I wonder if there is a feeling of abandonment on the part of
the family - like they’re less than worthy of staying (S)
SENSE OF BELONGING
RESPONSES
•We were part of a family. In my mind, my father felt he had
lost something. He felt out of place on PCH (F)
•I felt lost because I didn’t know where to go. I never felt
like I belonged (F)
•Even though, they’re invited back, they feel like they were
sent away. Someone else has moved into the room so
quickly, it seems so cold. (S)
•The more involved the family are, the harder the transition
and the more guilt we feel (S)
SENSE OF BELONGING
RECOMMENDATIONS
•Assignment of a specific SCU staff member to liase with
family to communicate and organize details of the move
•Assignment of a specific SCU staff member to escort the
family member on their first visit to the new unit even if
they were not able to accompany the resident on moving
day
•A formal farewell that would acknowledge the closing of
this chapter, appreciation for those memories, and best
wishes for the next chapter
SENSE OF PURPOSE
RESPONSES
•They have the added responsibility of having to teach new
staff all the little things (S)
•We made an issue of it every time we’d go there (PCH).
Now everyone scatters and think what will they complain
about today. (F)
•When we were there, and I don’t think it was a bad thing
that we were there every day. They never know when
you’re going to come in, if they had bad personnel maybe
we would have noticed it (PCH) (F)
SENSE OF PURPOSE
RESPONSES
•If discharge criteria were laid out clearly, families could start
to make their own decisions a bit, exert some control over the
process (S)
•You just find the best way to adapt, the best way to being the
stronger half for the family members, and try to be the strength
for them instead of being in the same boat (S)
•It’s a period of adjustment that involves proving yourself to
these people and their loved ones that you’re looking after (S)
SENSE OF PURPOSE
RECOMMENDATIONS
•The creation of an admission package of information that
includes the purpose of SCU and outlines clear admission
and discharge criteria
•Regular communication with families that includes
discussion of relocation as an expected outcome
•An invitation to family members to participate in the
transfer of the resident along with the transfer of care
planning information to the new unit if desired
SENSE OF ACHIEVEMENT
RESPONSES
•I was on top of everything. Some families would come in
and not know how to handle it. (F)
•Staff just wanted to be there. They really enjoyed coming
to work. They were a really happy group that never forgot
to include the resident (F).
•We all cared for him together, all three of us, we were all in
it together (F)
•I keep her busy. It’s making use of those moments and
people just need to be reminded how important that is (F)
SENSE OF ACHIEVEMENT
RESPONSES
•There’s a lot of body language cues that people who work
with them understand. We can probably prevent an element
of emotional distress for them (S)
•Residents have often been there for a long time and staff feel
they are best able to provide care for that individual (S)
SENSE OF ACHIEVEMENT
RECOMMENDATIONS
•Assurance of continued invitation to family members to
participate in care planning
•Team building to ensure clear consistent goals are shared
by family and staff
SENSE OF SIGNIFICANCE
RESPONSES
•On the PCH unit, he was like just there, they would
speak to him on occasion, as opposed to SCU where
people always came to see him and speak to him (F)
•Everyone was kind and good. All the holidays were
made so great. (F)
•It’s easier to deal with a death than a transfer. It’s
comforting to see them pass away as part of our family so
we can provide end of life care (S)
SENSE OF SIGNIFICANCE
RESPONSES
•Never once did I feel we were on the outside looking in (F)
•I don’t think I contribute anything (F)
•They feel like they are less than worthy of staying (S)
•When he (a family member) was sick last spring, they all
wondered where he was and if he was okay (F)
•They will receive “generic” care without the little things (S)
SENSE OF SIGNIFICANCE
RECOMMENDATIONS
•Develop an awareness of the importance of meeting the
needs of the other five senses
•Develop an awareness of the importance of appreciating
each individual’s contribution (family and staff) towards
meeting resident goals
CONCLUDING MUSINGS
“Learning to learn” is an extremely uncommon capability
within healthcare organizations, and while not unique to
health care, turning knowledge into action bears serious
consideration
THANKS !
QUESTIONS?