RELATIONSHIP CENTERED CARE DURING RELOCATION

Julie JamesResident Care ManagerMisericordia Health CentreMarch 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 atthe 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)

•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

THE SENSES FRAMEWORK

SENSE OF SECURITY

To feel safe and receive or deliver competent care

SENSE OF CONTINUITY

Recognition of biography, using the past to make senseof the present, and help to plan the future; working withina consistent team using an agreed philosophy of care

SENSE OF BELONGING

Having opportunities to form meaningful relationshipsand to feel part of the community of the home, whetheras 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 feelsatisfied with one’s efforts

SENSE OF SIGNIFICANCE

To feel that you, and what you do, matter, and thatyou 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?