 
|
|
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| Journal of the New Zealand Medical Association,
06-May-2005, Vol 118 No 1214
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
|
An evaluation of two respite models for older people and
their informal caregivers
Anna King, Matthew Parsons
New Zealand’s population is continuing to age, and
therefore the demand for and cost of health and disability services is
increasing.1,2
Ageing in place (the concept of
supporting an older person to remain living in their own home until they die;
reliant on adequate home care, caregiver support, and appropriate housing)
allows the older person to remain in their home despite their health care needs
increasing3 and literature reveals that many
older people prefer to live at home for as long as possible, which is beneficial
in a variety of ways.3–5
Ageing in place is strongly associated
with participation, independence, and wellness—and is thought to be less
expensive than long-term residential
care.5,6
An informal caregiver is usually a family member or a friend
who is unpaid and offers a wide range of assistance to an older
person.2,7,8 In contrast, a support worker is
defined as a paid nursing assistant trained to provide coherent support for
patient rehabilitation whose two major functions can be defined as the
‘enabling’ and ‘assisting’ role.
Enabling encompasses housekeeping and
administrative tasks, while assisting
relates to technical tasks.9,10
Despite the benefits of
ageing in place, research shows that
informal caregivers experience considerable stress, which affects the health and
quality of life of the older person.11,12
Therefore, respite care has been developed and is defined as a service or
services which provide temporary provision of care for the older person living
at home, allowing the primary informal caregiver relief and rest from their
caregiving responsibilities.11,12 These
services can be provided in different settings (such as nursing homes, the home,
or day care centres) and range from a few hours to a few weeks, either on a
regular or irregular basis.13,14 The older
people who utilise respite services are often frail, dependent, and have high
needs. Consequently, respite care aims to alleviate the burden and stress
experienced by the informal caregiver.13,14
Respite services can lead to increased caregiver satisfaction, the ability to
provide higher quality of care with increased confidence, and an improved
understanding of the caregiver
role.14
In New Zealand, the health and disability support services
currently have gaps, overlaps, and inconsistencies, which results in
inefficiency and confusion for older people and caregivers trying to utilise
service options.2 In addition, even if
accessible services are available for older people living at home, there can
still be duplication and gaps without appropriate
coordination.5 Therefore, case-management has
been developed as it aids older people to identify and utilise the health and
disability support services available to them while promoting ageing in
place.3,5
For the past 15 years, the respite care programme at
Waitemata District Health Board (DHB) has remained unchanged, with respite care
and Needs Assessment and Service Coordination (NASC) operating as distinct
services. This led to fragmentation for the client and caregiver as they had two
separate service coordinators. Therefore, two case-management models have been
developed which aim to improve the delivery of respite care services by having
one person involved with coordination of all support services (for both the
client and caregiver).
Previously, the respite service had little
flexibility—as older people and caregivers were allocated a set block of
respite every few weeks or months. When a ‘maximum rotation’ of 2
weeks in care every 6 weeks was no longer adequate, permanent rest home or
private hospital care was considered. However, with the introduction of the two
new respite models, the caregiver and older person can use their allocated
respite funding as they choose—as the choice of home-based respite, the
use of a respite facility, an increase in support services, or a combination of
all three.
The first model has been implemented in the North and West
region of the Waitemata DHB area. When high-needs clients and their caregivers
require relief care (relief care is
defined as over 50 days a year of carer support [respite funding over $70 per
week]), the client’s current Needs Assessment Service Coordination (NASC)
worker refers them to a respite coordinator who manages their care.
The second model has been implemented in the Rodney region
of the Waitemata DHB area. For this model, clients who require relief care will
have their NASC Manager coordinate their support and care. The respite
coordinator will have a caseload of intensive service coordination (ISC)
clients, with the additional role of budget management for respite
clients.
These two models were trialled for 12 months over 2002 and
2003. The aim of this research study was to evaluate the two respite models of
relief care for clients and their unpaid caregivers in the Waitemata DHB area.
The balanced scorecard approach was used to ensure multiple groups and
perspectives were assessed enabling a comprehensive
evaluation.15
Five research questions were devised using the balanced
scorecard framework:
MethodsParticipantsEvaluation—The
evaluation consisted of semi-structured interviews and postal surveys directed
to clients (utilising respite care) and staff members involved in both the
North/West and Rodney models. Two older people and their unpaid caregivers (one
from each region), two respite coordinators (one from each region), and the NASC
Manager for Waitemata DHB were included in the interviews.
Several older people utilising the respite services are
in poor health and often unable to communicate effectively. Therefore, the
respite coordinator (for each model) identified an appropriate older person and
carer who consented to being interviewed. The allied health professionals
surveyed included nurses and occupational therapists from North Shore Hospital
and Waitakere Hospital who may have been involved with respite care.
Inclusion
criteria—All older people (65 years and over) and their full-time
unpaid caregivers who received respite care services from the Waitemata DHB.
These participants had already met the NASC eligibility criteria. The cost of
their caregiver relief was above NZ$70.00 per week (50 days per year of carer
support). All staff that had some involvement in assessing, case-managing, or
providing respite care for the older person meeting the above
criteria.
Exclusion
criteria—Older people or caregivers who had (or were recently
recovering from) a serious mental or physical illness or injury.
Interviews and postal surveysThe semi-structured interviews
were audio taped, and lasted approximately 20 minutes. Interviews for older
people and their caregivers were conducted in the participant’s home.
Other interviews were conducted in a private room at the participants’
workplaces. After analysing the interviews (using a general inductive approach),
relevant themes or categories were identified. From this data, postal surveys
were then developed. The surveys consisted of approximately 10 questions using a
five-point Likert scale (Strongly Disagree to Strongly Agree), with space for
comments at the end.
Evaluation toolThe evaluation tool used for
this study was the balanced scorecard developed by Leggat and
Leatt.15 This scorecard is based on five key
perspectives: customer, financial, innovation and learning, internal business,
and community. Use of this framework ensured that multiple groups and
perspectives were considered in the evaluation.
Ethical approvalEthical approval was sought and
approved by the Auckland Regional Ethics Committee, New Zealand. Approval was
also sought and approved by the Waitemata DHB and the Maori Research Advisory
group. All participants were sent an information sheet providing information
regarding the study and a consent form. All participants were ensured
confidentiality and informed they could withdraw at any stage without having
their care or employment compromised.
ResultsThis study displayed small sample
sizes and low response rates for postal surveys, therefore only descriptive
analysis was undertaken and no firm conclusions can be drawn from the results.
There was a 100% response rate for all interviews. Across the two regions
(North/West and Rodney), postal surveys were received from 21 older people
(21.2% response rate), 36 informal caregivers (36.4% response rate), 11 NASC
workers (50% response rate), and 3 allied health professionals (9.7% response
rate).
The interview and survey findings of the older people and
caregivers showed that a high percentage (94%) were satisfied with both of the
respite models. Specifically, older people and caregivers (89%) felt satisfied
with the availability, accessibility, and amount of contact they received from
their case-manager (respite coordinator or NASC worker).
Several respondents wrote that the previous respite model
was not flexible, and did not provide control in decision-making—as the
older person and caregiver were told when and how they would receive respite
(usually in a respite facility). However, older people and caregivers reported
that the current respite services were flexible (87%) to meet their needs and
they had more control in decision-making (79%).
Caregivers from the two respite models reported that,
although they did receive a break, it was insufficient. One caregiver stated the
respite gave them a break
‘physically’ but not ‘mentally’.
Both interview and survey findings revealed that numerous
older people and caregivers misinterpreted the respite service as the respite
facility where the older person received respite. Consequently, many respondents
(75% from interviews, 39% from surveys) identified improvements for the respite
facility, rather than the respite service. In addition, caregivers made comments
that the older person’s condition deteriorated after staying at the
respite facility and they did not believe it promoted independence. Survey
comments from older people and caregivers in the North/West model identified the
need for continuity of support workers with home-based respite.
Interviews with the NASC Manager and respite coordinators
revealed there was high satisfaction with both respite models. Interviewees
identified the following areas of excellence for the two models: Ageing in
place, flexibility, client-centred, cost-effective, and case-management. In
general, staff believed that the respite services do provide caregivers with a
break to help alleviate their stress.
Both respite coordinators reported high job satisfaction,
although they agreed it could be stressful at times. The NASC Manager and
respite coordinators believed both respite services improved the health status
of the older person and the caregivers.
Improvements were identified for both the respite models. In
the North/West model, it was felt that there was a lack of back-up on a personal
and professional level. It was suggested that two respite coordinators in the
North region and two in the West region would be an improvement (at the time of
this evaluation there was one coordinator in each of these areas). In the Rodney
region, issues were raised regarding extra stress, time, overlap, and resources
spent on the NASC workers who had to learn the respite coordinator role. It was
suggested that the NASC workers would benefit from an initial training
programme, if the Rodney model were to be adopted.
NASC survey results found that NASC workers (38%) from both
models reported allied health professionals require increased awareness about
the respite service. Some NASC workers (25%) from the North/West region
identified the requirement for extra staff to be trained in the respite
coordinator role. A few NASC workers (25%) from the Rodney region stated that
NASC workers should receive training for the respite coordinator role.
The Support Package Allocation (SPA) band is used to
determine the amount of funding the respite coordinator can access to purchase
services for the older person and their caregiver. The majority of older people
having respite care are placed in the ‘High’ or ‘Very
High’ SPA band category. For each individual area (i.e. Rodney, North, and
West) the maximum SPA for clients is $360 and $600 per week for the
‘High’ and ‘Very High’ SPA band category, respectively.
Financial findings revealed that the average actual expenditure of the SPA band,
for older people in ‘High’ and ‘Very High’ categories
combined, is 63% for the North/West model and 64% for the Rodney model, per week
respectively
Since implementing the two new models of respite relief in
2002, the volume of older people receiving home-based respite has increased from
less than 1% to 50% at the time of this evaluation. Although staff members
reported their job as being stressful at times there still appeared to be high
job satisfaction. At the time of this evaluation there was no staff turnover in
respite care.
DiscussionThis section will discuss the
results of this study in relation to the five research questions. Interestingly,
results revealed that the two models were similar in several aspects and
therefore it may appear they have not been compared. However, when differences
were noted between the two respite models this has been stated. In addition,
results showed that clients found both the new models more flexible than the
previous “old” model. Although this was not a direct comparison
between the two new models, it was still a significant finding to be included in
the discussion.
How do older people and
informal caregivers view the respite models of relief care?—Older
people and caregivers reported high levels of satisfaction with various aspects
of both models, such as increased flexibility and control in decision-making
about how they used their allocated respite funding. Flexible service delivery
is vital as it allows for client needs to be
met.5 Control in decision-making is
significant—as a recent study revealed control over daily living is rated
highly as an important need to be met for older
people.16 Interestingly, since changing the
respite models of relief care to enable the caregiver to have more control in
decision-making, the amount of older people receiving home-based respite has
dramatically increased.
Informal caregivers appear to find their respite relief
insufficient and still report stress, despite support from the respite services.
This may have been related to comments made that the older person’s
condition deteriorated once they returned from the respite facility. This could
place increased stress on the caregiver, particularly once the older person
returns from respite. Research overseas has shown respite services can increase
caregiver stress due to the quality of care and deterioration of the older
person post respite.17,18 The issue of
effectively meeting informal caregivers’ needs and completely alleviating
their stress requires further exploration. In addition, a strong partnership
between case managers and informal caregivers should be developed to adequately
meet their needs and alleviate stress.
When the North/West model was initiated, there were concerns
regarding discontinuity—as coordination of care shifted from the NASC to
the respite coordinator at a time when the client may be feeling particularly
fragile and vulnerable. However, it was found that both clients and staff
reported no problems when this shift in coordination of care
occurred—possibly due to the successful teamwork of both the NASC and
respite coordinator. Staff are aware of this potential problem and therefore
work in effective collaboration to prepare each other and the client for this
change.
How do the models of relief
care look to funders?—For clients in the ‘High’ and
‘Very High’ SPA band categories the average actual expenditure for
both the North/West and Rodney models was below the top range of the SPA band
the older person was in. This means that the funders were spending less than the
top range available on clients utilising respite care services.
In addition, there was little difference between the two
models in terms of financial spending, as both spent very similar percentages of
their SPA band. Although the actual expenditure was calculated by including
expenses (such as personal care, household assistance, and caregiver support),
the non-financial costs to the caregiver did not appear to be included. For
example, these costs may include stress and
isolation.8
How can the respite models
of relief care continue to improve?—Comments about how the respite
facilities could improve often related to the individual needs of the older
person, and several caregivers appeared to be concerned with the care the older
person received during their time at the respite facility. Research has shown
that caregivers have found use of respite services stressful, as they are
concerned about poor facilities and what happens to the older person while in
care.17,19 This area needs further exploration
as it would not only be of benefit to the older person and the care they
receive, but may also help relieve added stress experienced by the caregiver.
Furthermore, in addition to forming a strong partnership,
case managers should expand their role into the community and monitor the older
person’s care closely when they are at a respite facility.
The strengths and weaknesses of home-based respite are often
debated.3 The benefits of home-based respite
include the older person remaining in their own home, which is preferred as they
feel independence and quality of life can be
maintained.3 Furthermore, moving to different
settings results in mental and physical deterioration for the frail older
person.3
In addition, previous research and findings from this study
have shown that many caregivers find using respite facilities distressing due to
concerns including quality of care and the impact that other unwell people
(using the same facility) has on the older
person.17,18 This study, however, revealed that
discontinuity of support workers is a drawback for using home-based respite.
Caregivers often feel the support worker does not understand the complexities
involved with caring for the older person.17,18
and discontinuity compounds this concern.
For the support worker to truly engage and develop
meaningful relationships with the older person over time, continuity of care is
critical.20 In addition, continuity of care is
strongly associated with high satisfaction levels for older people and informal
caregivers who utilise outpatient services.21
Moreover, to make home-based respite a more appealing option, case-managers need
to facilitate the issues and ensure the caregiver and older person are satisfied
with the care they receive at home.
Implementing changes to the two models, as suggested by
staff, could prove effective long term, although further resource and cost would
be required to employ extra staff and run a new programme.
At what must the respite
models of relief care excel?—Staff members identified the same
areas of excellence that both models achieved. In light of the evidence, these
are all important areas that the models of respite care should be
achieving.
In general, there appeared to be high job satisfaction for
respite coordinators and NASC workers, although both of the respite coordinators
who were interviewed agreed their job could be stressful at times. In addition,
there was no turnover for respite staff since implementing the new models of
respite care to the time of this evaluation.
How do the respite models
of relief care impact on the health status of older people and informal
caregivers?—Staff from both models believed that, if an older
person’s health deteriorated, appropriate referrals were made as part of
the ongoing intensive service coordination function and the respite services
provided informal caregivers with a break—thus reducing their stress,
which had a positive impact on their health. Furthermore, research has shown
that the health of the caregiver directly affects the health of the older
person.12 Therefore, by relieving the
caregiver’s stress and improving their health, the older person may
benefit too.
A few informal caregivers felt the older person’s
condition deteriorated once returning from the respite facility. This does not
relate to the respite models but reflects more on the individual respite
facility, however it is an important point to mention. International research
has shown that the older person can experience difficulties after the respite
period due to factors such as the quality of care and poor
facilities.17,18 This situation could worsen
the health status of the caregiver as they experience increased
stress.17,18 As previously mentioned, case
managers should ensure that the older person is having their needs met at the
respite facility, which assists in reducing caregiver stress.
This study was limited by small samples sizes and low
response rates. As many older people who receive respite services have poor
health and are highly dependent, it was expected there would be a low response
rate from these participants. The reason for a low response rate from caregivers
is unknown. This could have been related to many informal caregivers being
stressed or burnt out and therefore reluctant to participate in the research. In
particular, there was a very low response rate for allied health professionals.
The time constraints and short turn-around to wait for
survey returns may have contributed to the low response rates, although it may
have been avoided if follow-up phone calls had been undertaken. Nevertheless,
the results of this study are still important, and may give guidance for future
respite care programmes and further research in this area.
In conclusion, several strengths and weaknesses were
identified in the two models of respite relief care. Flexibility within the
respite models of care, allows the caregiver more control over decision-making
about the support services they receive. Continuity of support workers for
home-based respite could make this option more appealing. Placement in respite
facilities may be linked to the older person’s condition deteriorating.
Lastly, case managers need to form strong partnerships with caregivers to ensure
that the needs of both the informal caregiver and older person are
met.
Author information:
Anna King, Research Fellow; Matthew Parsons, Senior Lecturer (Gerontology),
School of Nursing, Faculty of Medical and Health Sciences, University of
Auckland, Auckland
Acknowledgements: We
acknowledge Kathy Peri for her help, particularly with the ethical approval
application. We are also grateful to Kate Matthews for her assistance and for
allowing publication of the findings.
Correspondence: Anna
King, Research Fellow, School of Nursing, Faculty of Medical and Health
Sciences, University of Auckland, Private Bag 92019, Auckland, Fax: (09) 367
7158; email: a.king@auckland.ac.nz
References:
|
|
||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||
| | Current
issue | Search journal |
Archived issues | Classifieds
| Hotline (free ads) Subscribe | Contribute | Advertise | Contact Us | Copyright | Other Journals |
|