Evidence or evaluation for Caregivers Involvement in Health

• Abetz L. Rofail D. Mertzanis P. et al. (2009)  Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment delivery. Advances in Therapy. 26(6):627-44, 2009 Jun.
  
  Study of management of Alzheimer's Disease and the burden upon caregivers.
  
  
• Bramble M. Moyle W. McAllister M. (2009) Seeking connection: family care experiences following long-term dementia care placement. Journal of Clinical Nursing. 18(22):3118-25, 2009 Nov.
  
  Study of caregivers who have placed a relative with dementia in long-term care.
  
  
• Byers DJ. Beard TH. Wicks MN.  (2009) African-American women's perceived health status while caring for a relative with end stage renal disease.  Nephrology Nursing Journal: Journal of the American Nephrology Nurses' Association. 36(6):599-604, 609-12, 632, 2009 Nov-Dec.
  
  Study of caregivers caring for relatives with end stage renal disease.
  
  
• Gantert TW. McWilliam CL. Ward-Griffin C. Allen N. (2009) Working it out together: family caregivers' perceptions of relationship-building with in-home service providers. Canadian Journal of Nursing Research. 41(3):44-63, 2009 Sep.
  
  Study of in-home services to seniors including professionals and the involvement of caregiver networks consisting of friends and family members.
  
  
• Hasson F. Spence A. Waldron M. et al. (2009) Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease. Journal of Palliative Care. 25(3):157-63, 2009.
  
  Study of experiences from caregivers while providing care to a dying loved one with chronic obstructive pulmonary disease.
  
  
• Hill K. Higgins A. Dempster M. McCarthy A. (2009) Fathers' views and understanding of their roles in families with a child with acute lymphoblastic leukaemia: an interpretative phenomenological analysis. Journal of Health Psychology. 14(8):1268-80, 2009 Nov.
  
  Study of fathers perceived and understood role during the child's lymphoblastic leukaemia illness and treatment.
  
  
• Kuscu MK. Dural U. Onen P. et al. (2009)  The association between individual attachment patterns, the perceived social support, and the psychological well-being of Turkish informal caregivers. Psycho-Oncology. 18(9):927-35, 2009 Sep.
  
  Study on perceived social support from caregivers of cancer patients in Turkey.
  
  
• Mavundla TR. Toth F. Mphelane ML. (2009) Caregiver experience in mental illness: a perspective from a rural community in South Africa.  International Journal of Mental Health Nursing. 18(5):357-67, 2009 Oct.
  
  Study of caregivers of persons with mental illness in a rural area in South Africa.
  
  
• McCorry NK. Dempster M. Clarke C. Doyle R. (2009) Adjusting to life after esophagectomy: the experience of survivors and carers. Qualitative Health Research. 19(10):1485-94, 2009 Oct.
  
  Study of challenges experienced by carers and  patients dealing with cancer Oesophageal.
  
  
•  Mcmahon-Parkes K. Moule P. Benger J. Albarran JW. (2009) The views and preferences of resuscitated and non-resuscitated patients towards family-witnessed resuscitation: a qualitative study. International Journal of Nursing Studies. 46(2):220-9, 2009 Feb.
  
  Study of family members and healthcare professionals views on the concept of family witnessed resuscitation.
  
  
• Pallangyo E. Mayers P. (2009) Experiences of informal female caregivers providing care for people living with HIV in Dar es Salaam, Tanzania.  Journal of the Association of Nurses in AIDS Care. 20(6):481-93, 2009 Nov-Dec.
  
  Study of experiences of female caregivers providing home-based care to people living with HIV in the Dar es Salaam region, Tanzania.
  
  
• Sinfield P. Baker R. Camosso-Stefinovic J. et al. (2009)  Men's and carers' experiences of care for prostate cancer: a narrative literature review. Health Expectations. 12(3):301-12, 2009 Sep.
  
  Studies of patients and carers experience of prostate cancer care.
  
  
• Stone AM. Jones CL. (2009) Sources of uncertainty: experiences of Alzheimer's disease. Issues in Mental Health Nursing. 30(11):677-86, 2009 Nov.
  
  Study of specific  experiences of families coping with uncertainty related to Alzheimer's disease.
  
  
• Thorne S. Armstrong EA. Harris SR. et al. (2009) Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period. Qualitative Health Research. 19(10):1383-94, 2009 Oct.
  
  Study involves exploration of  communications across the cancer journey from the patient perspective.

Evidence for consumer involvement in health

• Mcmahon-Parkes K. Moule P. Benger J. Albarran JW. (2009) The views and preferences of resuscitated and non-resuscitated patients towards family-witnessed resuscitation: a qualitative study.  International Journal of Nursing Studies. 46(2):220-9, 2009 Feb.
  
  Study of family members and healthcare professionals views on the concept of family witnessed resuscitation.
  
  
• Maguire R. Forbat L. Kearney N. Rowa-Dewar N. (2009)  Quite an awkward situation to be in': perceptions of patients, carers and health and social care professionals of the supportive cancer care in British military personnel stationed in Germany. Supportive Care in Cancer. 17(10):1269-76, 2009 Oct.
  
  Study on British Forces in Germany and their dependents who experience cancer and are based in Germany.
  
  
• Midtgaard J. Hansen MJ. Grandjean B. (2009)  Modesty and recognition--a qualitative study of the lived experience of recovery from anal cancer. Supportive Care in Cancer. 17(9):1213-22, 2009 Sep.
  
  Study was to describe the lived experiences of patients recovering from anal cancer.
  
  
• Strack KM. Schulenberg SE. (2009)  Understanding empowerment, meaning, and perceived coercion in individuals with serious mental illness. Journal of Clinical Psychology. 65(10):1137-48, 2009 Oct.
  
  Study of inpatients with serious mental illness and the effects empowerment has on their psychiatric symptoms.

Evaluation of consumer involvement in health

• A Barnard, M Carter, N Britten, R Purtell, K Wyatt, A Ellis (2005) Summary of PC11 Report: An evaluation of consumer involvement in the London Primary Care Studies Programme. INVOLVE, Hampshire, UK (viewed 1/9/06)
   http://www.invo.org.uk/pdfs/Summary_of_PC11Report1.pdf
  
  This document summarises an evaluation of the impact of consumer (service user/carer) involvement in eleven research projects known collectively as the London Primary Care Studies Programme (all of which were required to include service users/carers within the project). This summary includes recommendations for best practice.  
   
• Crawford MJ, Rutter D, Manley C, Weaver T, Bhui K, Fulop N, Tyrer P (2002) Systematic review of involving patients in the planning and development of health care. British Medical Journal 325(7375):1263. (viewed 1/9/06)  http://www.pubmedcentral.gov/picrender.fcgi?artid=136920&blobtype=pdf
  
  This article examines the effects of involving patients in the planning and development of health care. It concludes that evidence supports the notion that involving patients has contributed to changes in the provision of services across a range of different settings.
  
  
• McCorry NK. Dempster M. Clarke C. Doyle R. (2009)  Adjusting to life after esophagectomy: the experience of survivors and carers.  Qualitative Health Research. 19(10):1485-94, 2009 Oct.
  
  Study of challenges experienced by carers and  patients dealing with cancer Oesophageal.
  
  
• Mcmahon-Parkes K. Moule P. Benger J. Albarran JW. (2009)  The views and preferences of resuscitated and non-resuscitated patients towards family-witnessed resuscitation: a qualitative study.  International Journal of Nursing Studies. 46(2):220-9, 2009 Feb.
  
  Study  of family members and healthcare professionals views on the concept of family witnessed resuscitation.
  
  
• Midtgaard J. Hansen MJ. Grandjean B. (2009)  Modesty and recognition--a qualitative study of the lived experience of recovery from anal cancer. Supportive Care in Cancer. 17(9):1213-22, 2009 Sep.
  
  Study was to describe the lived experiences of patients recovering from anal cancer.
  
  
• Zhang L. Li X. Kaljee L. Fang X. Lin X. Zhao G. Zhao J. Hong Y. (2009)  I felt I have grown up as an adult': caregiving experience of children affected by HIV/AIDS in China. Child: Care, Health & Development. 35(4):542-50, 2009 Jul.
  
  Study on experiences of both people living with HIV/AIDS and their family members including children.
  
  
• Pfaff KA. El-Masri MM. Fox-Wasylyshyn SM. (2009) Comparing the psychological stress between non-smoking patients and smoking patients who experience abrupt smoking cessation during hospitalization for acute myocardial infarction: a pilot study. Canadian Journal of Cardiovascular Nursing. 19(4):26-32, 2009.
  
  Study compared the psychological stressors between non-smoking AMI patients and smoking patients who ceased smoking following admission to the CCU.

Literature reviews

• Gregory, J for the Australian Institute of Health Policy Studies (2006) Conceptualising consumer engagement:  A review of the literature.  Australian Institute of Health Policy Studies (viewed 6/12/06).

  http://www.aihps.org/component/option,com_docman/task,doc_view/gid,78/Itemid,86/

This literature review explores the current practice of consumer engagement in Australia. It describes the current status of consumer engagement in Australia and includes local and international examples of engagement practice.  It also considers influences on, and barriers to, successful engagement.

Involving young people

• Kirby P (2004) A guide to actively involving young people in research:  For researchers, research commissioners, and managers INVOLVE, Hampshire, UK (viewed 1/9/06)

  http://www.invo.org.uk/pdfs/Involving_Young_People_in_Research_151104_FINAL.pdf

This document draws on the experience of young (and adult) researchers through workshops and literature an dprovides a guide as to why and how to actively involve young people as researchers and partners in social and health care projects.  It also provides useful information regarding the benefits of engaging young people generally.

• Crnkovic M. Divcic B. Rotim Z. Coric J. (2009)  Emotions and experiences of hospitalized school age patients. Acta Clinica Croatica. 48(2):125-35, 2009 Jun.
  
  Study on children and adolescents experience of hospitalisation and the effects of separation from their parents/caregivers.

Guide for practitioners

• Department of Disability, Housing, and Community Services (2005) Your guide to engaging with the community. ACT Department of Health, Canberra (viewed 1/9/06)
   http://health.act.gov.au/c/health?a=dlpol&policy=1150871148
  
  This Community Engagement Manual published by the ACT Government provides a comprehensive set of tools and techniques to assist agencies when engaging with the community to reach the most desirable outcomes for everyone concerned. The manual promotes a greater sense of collaborative partnership and encourages government agencies to focus on quality and greater participation.