RELATIONSHIP CENTERED CARE

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RELATIONSHIP CENTERED CARE DURING RELOCATION
Julie James Resident Care Manager Misericordia
Health Centre March 11, 2008
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PREAMBLE
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• Objectives
• introduction
• review of the literature
• research design and data collection
• data analysis and discussion
• conclusions

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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

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Muller-Hergl (2002) describes institutional care
in nursing homes as negative containers at the
end of the service chain
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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
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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)
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• 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

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Does the emphasis on individual outcomes come
at the expense of interdependencies?
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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

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• 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

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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

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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

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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

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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

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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

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FAMILY CAREGIVING DURING RELOCATION

• ADMISSION
• many experience guilt or worry about their
  relatives 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 ones
  care without any clear expectations of what their
  involvement in care could look like
• working in partnership, forging relationships,
  promoting open communicationcommon theme in
  striving to meet the goals of families

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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

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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

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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)

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RESEARCH DESIGN DATA COLLECTION

• Retrospective qualitative study
• Ethics approval
• Two groups of participants invited to participate

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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

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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

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PARTICIPANTS

• 2 groups family members and staff members
• selection criteria
• invitation to participate

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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

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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

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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

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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.
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• 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)

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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

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SENSE OF SECURITY
To feel safe and receive or deliver competent care
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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
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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
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SENSE OF PURPOSE
To have opportunities to engage in purposeful
activity, or to have a clear set of goals to aim
for
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SENSE OF ACHIEVEMENT
To achieve meaningful or valued goals and to
feel satisfied with ones efforts
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SENSE OF SIGNIFICANCE
To feel that you, and what you do, matter, and
that you are valued as a person of worth
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RESPONSES AND RECOMMENDATIONS OF THE PARTICIPANTS
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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 facesa comfort zone
  with our routines (S)
• a lot of body language cues that people who work
  with them understand (S)

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SENSE OF SECURITY

• RESPONSES
• I felt more comfortable they (SCU) were getting
  me what I wanted when Dad got sickits 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
  didnt 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)

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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

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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

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SENSE OF CONTINUITY
RESPONSES

• Not knowing what the other group of staff is
  likeits 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 dont have relative lucidity and
  recognition of staff that care for them
  regularly, transition still has an impact. Its
  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)

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SENSE OF CONTINUITY
RESPONSES

• Its 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 wasnt there everyday (F)
• Theres an impact on the person with dementia but
  not always - those who recognize surroundings and
  faces will have a more difficult time (S)
• Its an attachment for them, they lose that
  feeling of trust, these people who would take
  care of their loved ones (S)

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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

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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

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SENSE OF BELONGING
RESPONSES

• It felt very alone.I felt very lonely (F)
• They felt a sense of abandonment in some way,
  like weve done something bad to them (S)
• Theres 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 its
  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 theyre less than
  worthy of staying (S)

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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 didnt know where to go. I
  never felt like I belonged (F)
• Even though, theyre 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)

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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

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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 wed go there
  (PCH). Now everyone scatters and think what will
  they complain about today. (F)
• When we were there, and I dont think it was a
  bad thing that we were there every day. They
  never know when youre going to come in, if they
  had bad personnel maybe we would have noticed it
  (PCH) (F)

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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)
• Its a period of adjustment that involves proving
  yourself to these people and their loved ones
  that youre looking after (S)

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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

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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. Its making use of those
  moments and people just need to be reminded how
  important that is (F)

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SENSE OF ACHIEVEMENT
RESPONSES

• Theres 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)

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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

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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)
• Its easier to deal with a death than a transfer.
  Its comforting to see them pass away as part of
  our family so we can provide end of life care (S)
  

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SENSE OF SIGNIFICANCE
RESPONSES

• Never once did I feel we were on the outside
  looking in (F)
• I dont 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)

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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 individuals contribution
  (family and staff) towards meeting resident goals

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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
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THANKS !
QUESTIONS?