|
  

   
  







  

—
 
    
NHS Research Ethics Committee 08/H0607/12
University of Oxford Central University Ethics Committee MSD/IDREC/C1/2007/14

  
  
!  " 

# $  %&   |
 &

 ' 
( ) 
) 

 
 * (´
 

|
  ´ 
    
 
    
 
 '
µA short break away from your carer, which provides
a rest for yourself and your carer¶ XAvailability of respite care service varies across #(
(NHS Direct Health encyclopaedia) the UK

µ. . . . the provision of resources designated to XCarer knowledge of availability XDay too short ± not enough relief from burden of
care
relieve the caregivers of some portion of the normal
care activities - that is some form of respite¶. (Zarit, XCost of services & users¶ financial resources X Too few days per week ± not enough relief
1990)
XCarers¶ felt stigma XReluctance to overrule patient with PD who
 refuses to attend
XAvailability of Informal social support network
Conflicting views
|

 
- about effectiveness XPatient willingness ÿ  

- about who it is for - carer or patient?
X†ives complete relief from caring burden
Caring for a patient with PD may have a detrimental (
 
 
impact on the carer, who will then need some respite # $( 
from the caregiver burden. * (
   

XEnables the carer to leave the patient with PD
Recent government policy initiatives have attempted for a few hours
to address some of the needs of patients & carers
XNeed recognised by health or social care
professional
through better provision of respite care.
  
 
 '
However little is known about the respite care needs XCrisis experienced by carer
of people with PD & their carers & how they are met.
XNeed recognised by carer (no longer able to #(
cope)
!$ Xack of mental stimulation
XPressure from adult children
X To explore the respite care needs & experiences Xack of social interaction
of patients with PD & their informal carers and
how they are met.
 
   '

 
 ' XFeel patronised by staff
However as the disease progresses the patient
XThe majority lacked experience of providing becomes more accepting and happy to sit and
respite care for patients with PD
 

observe.
XSome assumed all patients with PD suffered with |

 
#
 dementia
A Qualitative approach was chosen to guide the
study as it was considered appropriate in exploring, XSome were reluctant to offer respite care to XMay feel abandoned by carer
describing and interpreting the experiences of the patients with PD because of their complex
participants studied. needs # $( 
A research advisory group representing patients, XAll were anxious to improve services to this
informal carers & professional respite care providers
XIn familiar surroundings
patient group
assisted throughout the study.
XCan maintain autonomy of action
ë$ |
 

  
 
Semi structured interviews conducted with a
purposeful sample of:
ë$$( 
 
 

XPatients and carers using respite care
services, drawn from UK wide PDS branch
membership
XRespite care providers drawn from the following
voluntary, private & public sector agencies in
the Midlands & South of England providing:


- residential care,
- NHS inpatient assessment and rehabilitation
- domiciliary care
- day centre care
18 patients with PD (age range: 59-86 years)
20 informal carers (age range: 44-81 years)
10 respite care providers
XTime for recreational activities
X Time to catch up on sleep
X Time to attend to other family demands
 
X To alleviate tensions at home
|     
Zarit S (1990) Interventions with frail elders and their
families: Are they effective and why? In Stephens M,
Carers preferred a package of home care, day care,
and brief residential care for the patient whereas
patients preferred domiciliary care.
Information about respite care is difficult to obtain
and there is limited choice.
The unique needs of patients with PD and their
carers seem poorly understood by respite care
providers.
The issues illuminated by this study have the
potential to contribute to the development of respite
care services most appropriate for this group of
users and patients.
Crouther J, Hobfoll S and Tennenbaum D.  

 
  , New York: Hemisphere, The study also forms the preliminary design stage of
! (


241-262. a proposed questionnaire survey of respite care in
Interviews were recorded, transcribed & thematically
PD.
analysed using specialist software QSR N5.

+ ,
 ' -$ .

- --  /0123 415676