Informal care and the self-management partnership: implications for Australian health policy and practice.
OBJECTIVE
The Serious and Continuing Illness Policy and Practice Study (SCIPPS) aims to improve the care and support for patients with chronic illness and their family carers. Here we describe the carers' contribution to the self-management partnership and discuss the policy and practice implications that are relevant to improving the support available for informal care in Australia.


METHODS
A secondary analysis of SCIPPS data. Fourteen carers of patients between 45 and 85 years with chronic heart failure, chronic obstructive pulmonary disease and diabetes were conveniently sampled from western Sydney and the Australian Capital Territory. Semi-structured interviews were conducted. Data were analysed using qualitative content analysis.


RESULTS
Key roles that carers perform in the self-management partnership included: home helper; lifestyle coach; advocate; technical care manager; and health information interpreter. Two negative consequences of juggling these roles included: self-neglect and conflict.


CONCLUSIONS
Rigid eligibility criteria limit carers' access to essential support programs which underestimates and undervalues their contributions to the self-management partnership. Support services should focus on the development of practical skills to perform the caregiving roles. In addition, health professionals require support to work more effectively with carers to minimise the conflict that can overshadow the care and self-management partnership.
The Menzies Centre for Health Policy, The University of Sydney, Victor Coppleson Building (D02), Camperdown, NSW 2006, Australia. beverley.essue@sydney.edu.au
Beverley M
BM
Essue
Tanisha
T
Jowsey
Yun-Hee
YH
Jeon
Masoud
M
Mirzaei
Carmen L
CL
Pearce-Brown
Clive
C
Aspin
Tim P
TP
Usherwood
D000368:Aged; D000369:Aged, 80 and over; D020958:Australian Capital Territory; D017028:Caregivers / Q000523:psychology; D002908:Chronic Disease / Q000523:psychology / Q000628:therapy*; D006291:Health Policy; D006801:Humans; D008875:Middle Aged; D009517:New South Wales; D012648:Self Care; D012944:Social Support