Abstract
Background
The important role played by carers of those with mental health problems is frequently undervalued among healthcare professionals.
Aims
To identify the difficulties encountered by carers in relation to obtaining information from mental health teams.
Methods
Participants in the study included carers or family members of persons with mental illness who were affiliated with a support group in Ireland. Information was gathered using an 18-item self-report questionnaire. This is an amended version of the Carer Well-Being and Support Questionnaire for carers of people with a mental health problem or dementia.
Results
One-hundred and fifty-nine carers complete the questionnaire. On average respondents stated that they have been in the role of a carer for someone with a mental health problem for 14.4 years, spending a median of 20-h caring each week. Despite most carers maintaining that they are generally satisfied with the support offered to them from medical and/or care staff, the majority (56.3 %) of respondents stated that they have specifically encountered difficulties accessing information from the treating mental health team. The main reasons given to them by the mental health team for withholding information include: lack of patient consent (46.2 %) and unavailability of a team member (46.2 %). From a carer perspective, respondents stated that the main reason they feel there is difficulty in accessing information is a lack of concern for their role as a carer in the patient’s management (60.5 %). More than 75 % of all respondents are afraid of negative consequences for them or for the person in their care as a result of information being withheld by the treating team.
Conclusions
Carer involvement is essential for the complete and effective management of individuals with mental illness. Confidentiality should not be used as a reason for completely excluding carers.
Similar content being viewed by others
References
McCrae J, Steffen S, Jones K et al (2007) EUFAMI physical healths survey—families/carers—2007. European Federation of Associations of Families of People with Mental Illness, Leuven
Expert Group on Mental Health Policy (2006) A vision for change: report of the expert group on mental health policy. The Stationery Office, Dublin
World Health Organization (2003) Organization of services for mental health. World Health Organization, Geneva
Pinfold V, Corry P (2003) Under pressure: the impact of caring on people supporting family members or friends with mental health problems. Rethink, London
O’Sullivan L (2008) Health and well-being of family carers in Ireland: results of a survey of recipients of the carer’s allowance. Care Alliance Ireland, Dublin
Care Alliance Ireland (2013) Family caring in Ireland. http://www.carealliance.ie/userfiles/file/Report%202013%20FA%20130513.pdf. Accessed 25 April 2014
Department of Social Protection http://www.welfare.ie/en/Pages/Carers.aspx. Accessed 8 May 2014
Department of Social Protection (2012) 2011 Statistical information on social welfare services. http://www.welfare.ie/EN/Policy/ResearchSurveysAndStatistics/Documents/2011stats.pdf. Accessed 25 April 2014
The Carers Association (2013) Analysis of budget 2013 from a family carer perspective. http://www.corkfamilycarersforum.ie/files/Budget-Analysis.pdf. Accessed 8 May 2014
Comhairle (2002) Supporting carers. Comhairle, Dublin. http://www.citizensinformationboard.ie/publications/social/social_research_carer.html. Accessed 8 May 2014
Equality Authority (2005) Implementing equality for carers. Equality Authority, Dublin
Government of Ireland (2007) National Development Plan 2007–2013. Stationery Office, Transforming Ireland, Dublin
Government of Ireland (2007) National Action Plan for Social Inclusion 2007–2016. Stationery Office, Dublin
Department of Health (2012) The national carers strategy, recognised, supported, empowered. http://www.carealliance.ie/userfiles/file/national_carers_strategy.pdf. Accessed 1 April 2013
Lloyd C, King R (2003) Consumer and carer participation in mental health services. Austral Psychiatry 11:180–184
Lammers J, Happell B (2004) Mental health reforms and their impact on consumer and carer participation: a perspective from Victoria, Australia. Issues Ment Health Nurs 25:261–276
Wynaden D, Orb A (2005) Impact of patient confidentiality on carers of people who have a mental disorder. Int J Ment Health Nurs 14:166–171
Gray B, Robinson C, Seddon D et al (2008) ‘Confidentiality smokescreens’ and carers for people with mental health problems: the perspectives of professionals. Health Soc Care Community 16(4):378–387
Dorland, Newman WA (2012) Dorland’s illustrated medical dictionary, 32nd edn. Elsevier Saunders, Philadelphia
Council Medical (2009) Guide to professional conduct and ethics for registered medical practitioners, 7th edn. Medical Council, Dublin
General Medical Council (2009) Confidentiality. http://www.gmc-uk.org/Confidentiality_core_2009.pdf_27494212.pdf. Accessed 9 May 2014
Rapaport J, Bellringer S, Pinfold V et al (2006) Carers and confidentiality in mental health care: considering the role of the carer’s assessment: a study of service users’, carers’ and practitioners’ views. Health Soc Care Community 14(4):357–365
Gold M, Philip J, McIver S et al (2009) Between a rock and a hard place: exploring the conflict between respecting the privacy of patients and informing their carers. Intern Med J 39:582–587
Dunne E (2006) The views of adult users of the public sector mental health services. Mental Health Commission, Dublin
Quirk A, Smith S, Hamilton S et al (2012) Development of the carer well-being and support (CWS) questionnaire. Mental Health Rev J 17:128–138
Quirk A, Smith SC, Hamilton S et al (2009) Development and validation of the carer well-being and support (CWS) questionnaire: report for the National Institute for Health Research Service Delivery and Organisation Programme. http://www.sdo.nihr.ac.uk/files/project/144-final-report.pdf. Accessed 26 November 2010
Department of Health (1995) Carers (Recognition and Services) Act 1995. Her Majesty’s Stationery Office, London
Department of Health (2001) Carers and Disabled Children Act 2000 and Carers (Equal Opportunities) Act 2004 combined policy guidance. Her Majesty’s Stationery Office, London
Feinberg L, Houser A (2012) Assessing family caregiver needs: policy and practice considerations fact sheet. AARP Public Policy Institute, Washington
The Carers Association (2011) Election manifesto 2011. http://www.carersireland.com/userfiles/file/Manifesto(1).pdf. Accessed 8 May 2014
Mental Health Reform (2012) Guiding a vision for change—manifesto. Mental Health Reform, Dublin
Mingyuan Z, Heqin Y, Chendge Y et al (1993) Effectiveness of psychoeducation of relatives of schizophrenic patients: a prospective cohort study in five cities of China. Int J Ment Health 22:47–49
Dixon L, Adams C, Lucksted A (2000) Update on family psychoeducation for schizophrenia. Schizophr Bull 26:5–20
Dixon L, Lehman A (1995) Family interventions for schizophrenia. Schizophr Bull 21:631–643
REFOCUS, College of psychiatrists of Ireland (2013) Who cares? Listening to the needs and experiences of carers of people with mental illness. http://www.irishpsychiatry.ie/Libraries/External_Affairs/REFOCUS_Who_cares_POST_Council_19_March_2013_2_FINAL.sflb.ashx. Accessed 1 April 2013
Royal College of Psychiatrists (2010) Carers and confidentiality in mental health: issues involved in information sharing. Royal College of Psychiatrists, London
Slade M, Pinfold V, Rapaport J et al (2007) Best practice when service users do not consent to sharing information with carers. Br J Psychiatry 190:148–155
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Wilson, L.S., Pillay, D., Kelly, B.D. et al. Mental health professionals and information sharing: carer perspectives. Ir J Med Sci 184, 781–790 (2015). https://doi.org/10.1007/s11845-014-1172-6
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11845-014-1172-6