A qualitative analysis of relatives’, health professionals’ and service users’ views on the involvement in care of relatives in Bipolar Disorder

BMC Psychiatry

Steven Jones²  Fiona Lobban²  Gerasimos Chatzidamianos¹ 

[1] Doctorate in Clinical Psychology, Division of Health Research, Faculty of Health and Medicine, Lancaster University, C38, Furness Building, Lancaster LA1 4YG, UK;Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster LA1 4YG, UK

关键词: Policy making;    Framework analysis;    Qualitative;    Barrier;    Relative involvement;    Relatives;    Mental health;    Carers;    Bipolar disorder;   

Others  :  1229566
DOI  :  10.1186/s12888-015-0611-x

 received in 2015-03-03, accepted in 2015-09-17,  发布年份 2015

【 摘 要 】

Background

Relatives of people with bipolar disorder report that services do not meet their own needs, despite clinical recommendations for the development of care plans for relatives, provision of information regarding their statutory entitlements, and formal involvement in decision making meetings. Further, there is now conclusive evidence highlighting the benefits of relatives’ involvement in improving outcomes for service users, relatives, and the health system as a whole. This qualitative study explored the views of relatives of people with bipolar disorder, service users and healthcare professionals regarding the barriers and the facilitators to relatives’ involvement in care.

Methods

Thirty five people were interviewed (12 relatives, 11 service users and 12 healthcare professionals). Audio recordings were transcribed verbatim and common themes in participants’ narratives emerged using framework analysis.

Results

Participants’ accounts confirmed the existence of opportunities for relatives to be involved. These, however, were limited and not always accessible. There were three factors identified that influenced accessibility namely: pre-existing worldviews, the quality of relationships and of communication between those involved, and specific structural impediments.

Discussion

These themes are understood as intertwined and dependent on one another. People’s thoughts, beliefs, attitudes, cultural identifications and worldviews often underlie the ways by which they communicate and the quality of their relationship. These, however, need to be conceptualised within operational frameworks and policy agendas in health settings that often limit bipolar relatives’ accessibility to opportunities for being more formally involved.

Conclusions

Involving relatives leads to clear benefits for relatives, service users, healthcare professionals, and the health system as a whole. Successful involvement of relatives, however, depends on a complex network of processes and interactions among all those involved and requires strategic planning from policy makers, operational plans and allocation of resources.

【 授权许可】

   
2015 Chatzidamianos et al.

【 图 表 】

Fig. 1.

【 参考文献 】

• [1]Goodwin FK, Jamison KR: Manic-Depressive Illness. Bipolar Disorders and Recurrent Depression. 2nd edition. Oxford University Press, USA; 2007.
• [2]World Health Organisation: The World health report: 2001; Mental health: new understanding, new hope. World Health Organisation, Geneva, Switzerland; 2001.
• [3]Moltz DA: Bipolar Disorder and the Family: An Integrative Model. Fam Process 1993, 32(4):409-423.
• [4]Perlick DA, Hohenstein JM, Clarkin JF, Kaczynski R, Rosenheck RA: Use of mental health and primary care services by caregivers of patients with bipolar disorder: a preliminary study. Bipolar Disord 2005, 7(2):126-135.
• [5]Girón M, Fernández-Yañez A, Mañá-Alvarenga S, Molina-Habas A, Nolasco A, Gómez-Beneyto M: Efficacy and effectiveness of individual family intervention on social and clinical functioning and family burden in severe schizophrenia: a 2-year randomized controlled study. Psychol Med 2010, 40(01):73-84.
• [6]Maji KR, Sood M, Sagar R, Khandelwal SK: A follow-up study of family burden in patients with bipolar affective disorder. Int J Soc Psychiatry 2012, 58(2):217-223.
• [7]Ogilvie AD, Morant N, Goodwin GM: The burden on informal caregivers of people with bipolar disorder. Bipolar Disord 2005, 7:25-32.
• [8]Steele A, Maruyama N, Galynker I: Psychiatric symptoms in caregivers of patients with bipolar disorder: A review. J Affect Disord 2010, 121(1–2):10-21.
• [9]Stalker K: Carers: An overview of concepts, developments and debates. In Reconceptualising Work with ‘Carers’: New Directions for Policy and Practice. Edited by Stalker K. Jessica Kingsley, London; 2003:15-36.
• [10]Wallcraft J, Amering M, Freidin J, Davar B, Froggatt D, Jafri H, Javed A, Katontoka S, Raja S, Rataemane S, et al.: Partnerships for better mental health worldwide: WPA recommendations on best practices in working with service users and family carers. World Psychiatry 2011, 10(3):229-236.
• [11]Ward-Griffin C, Schofield R, Vos S, Coatsworth-Puspoky R: Canadian Families Caring for Members With Mental Illness: A Vicious Cycle. J Fam Nurs 2005, 11(2):140-161.
• [12]Department of Health: Caring about Carers: A National Strategy for Carers. Her Majesty’s Stationery Office, London; 1999.
• [13]Department of Health: The NHS Improvement Plan. Putting People at the Heart of Public Services. Her Majesty’s Stationery Office, London; 2004.
• [14]Department of Health: Carers at the heart of 21st century families and communities: a caring system on your side, a life of your own. Her Majesty’s Stationery Office, London; 2008.
• [15]Department of Health: Report of the Standing Commission on Carers 2007 to 2009: Carers at the heart of 21st century families and communities. Her Majesty’s Stationery Office, London; 2009.
• [16]Department of Health: Recognised, valued and supported: next steps for the Carers Strategy. Her Majesty’s Stationery Office, London; 2010.
• [17]Government HM: Carers (Recognition and Services) Act 1995. Her Majesty’s Stationery Office, London; 1995.
• [18]Government HM: Carers and Disability Children Act 2000. Her Majesty’s Stationery Office, London; 2000.
• [19]Government HM: Carers (Equal Opportunities) Act 2004. Her Majesty’s Stationery Office, London; 2004.
• [20]SAMHSA: Transforming mental health care in America - The federal action agenda: First steps In Edited by United States Department of Health and Human Services: Substance Abuse & Mental Health Services Administration (SAMHSA). Department of Health and Human Services, Rockville, USA; 2009.
• [21]Australian Government: Carer Recognition Act. Australian Govenrment, Australia; 2010.
• [22]Mitchell PB: Australian and New Zealand clinical practice guidelines for the treatment of bipolar disorder. Aust N Z J Psychiatry 2004, 38(5):280-305.
• [23]NICE: Bipolar disorder: the assessment and management of bipolar disorder in adults, children and young people in primary and secondary care In Edited by National Institute for Health and Clinical Excellence, vol. 185. National Clinical Practice Guideline, London, U.K.; 2014.
• [24]American Psychiatric Association: Practice guideline for the treatment of patients with major depressive disorder, vol. 159. 3rd edition. American Psychiatric Association, Arlington (VA); 2010.
• [25]Geddes JR, Miklowitz DJ: Treatment of bipolar disorder. Lancet 2013, 381(9878):1672-1682.
• [26]Miklowitz DJ, Axelsen DA, Birmaher B, George EL, Taylor DO, Schneck CD, Beresford CA, Dickinson LM, Craighead WE, Brent DA: Family-focused treatment for adolescents with bipolar disorder: results of a 2-year randomized trial. Arch Gen Psychiatry 2008, 65:1053-1061.
• [27]Miklowitz DJ, Schneck CD, Singh MK, Taylor DO, George EL, Cosgrove VE, Howe ME, Dickinson LM, Garber J, Chang KD: Early intervention for symptomatic youth at risk for bipolar disorder: a randomized trial of family-focused therapy. J Am Acad Child Adolesc Psychiatry 2013, 52(2):121-131.
• [28]Perlick DA, Miklowitz DJ, Lopez N, Chou J, Kalvin C, Adzhiashvili V, Aronson A: Family-focused treatment for caregivers of patients with bipolar disorder. Bipolar Disord 2010, 12(6):627-637.
• [29]Reinares M, Colom F, Sanchez-Moreno J, Torrent C, Martinez-Aran A, Comes M, Goikolea JM, Benabarre A, Salamero M, Vieta E: Impact of caregiver group psychoeducation on the course and outcome of bipolar patients in remission: a randomized controlled trial. Bipolar Disord 2008, 10(4):511-519.
• [30]Morriss RK, Faizal MA, Jones AP, Williamson PR, Bolton C, McCarthy JP: Interventions for helping people recognise early signs of recurrence in bipolar disorder. Cochrane Database Syst Rev 2007, 24(1):CD004854.
• [31]D’Souza R, Piskulic D, Sundram S: A brief dyadic group based psychoeducation program improves relapse rates in recently remitted bipolar disorder: a pilot randomised controlled trial. J Affect Disord 2010, 120(1):272-276.
• [32]Peters S, Pontin E, Lobban F, Morriss R: Involving relatives in relapse prevention for bipolar disorder: a multi-perspective qualitative study of value and barriers. BMC Psychiatry 2011, 11(1):172.
• [33]Worthington A, Rooney P: The Triangle of Care; Carers included: A guide to best practice in acute mental health care. The Princess Royal Trust for Carers and the National Mental Health Development Unit, London; 2010.
• [34]Worthington A, Rooney P, Hannan R: The Triangle of Care. Carers Included: A Guide to Best Practice in Mental Health Care in England. 2nd edition. Carers Trust, London; 2013.
• [35]Miklowitz DJ: Bipolar disorder : a family-focused treatment approach. 2nd edition. Guilford, New York; London; 2008.
• [36]Pompili M, Harnic D, Gonda X, Forte A, Dominici G, Innamorati M, Fountoulakis KN, Serafini G, Sher L, Janiri L, et al.: Impact of living with bipolar patients: Making sense of caregivers’ burden. World J Psychiatry 2014, 4(1):1-12.
• [37]Fadden G: Training and disseminating family interventions for schizophrenia: developing family intervention skills with multi-disciplinary groups. J Fam Ther 2006, 28(1):23-38.
• [38]Burbach FR. Developing systemically-oriented secondary care mental health services. Plymouth: Plymouth University; 2013.
• [39]Pontin E, Peters S, Lobban F, Rogers A, Morriss R: Enhanced relapse prevention for bipolar disorder: a qualitative investigation of value perceived for service users and care coordinators. Implement Sci 2009, 4(1):4.
• [40]Office for National Statistics: Socio-demographic differences in general practice consultation rates for psychiatric disorders among patients aged 16–64. UK Statistics Authority, London; 2001.
• [41]Ritchie J, Spencer L: Qualitative data analysis for applied policy research. In Analyzing qualitative data. Edited by Bryman A, Burgess RG. Routledge, London; 1994:173-194.
• [42]Srivastava A, Thomson SB. Framework Analysis: A Qualitative Methodology for Applied Policy Research. JOAAG. 2009, 4(2)
• [43]INVOLVE. Briefing notes for researchers: involving the public in NHS, public health and social care research. Eastleigh INVOLVE; 2012
• [44]Clark JP. How to peer review a qualitative manuscript. In: Godlee F, Jefferson T, editors. Peer Review in Health Sciences. 2nd ed. London: BMJ Books; 2003. p. 219–35.
• [45]First MB, Gibbon M, Spitzer RL, Williams JBW, Benjamin LS: Structured Clinical Interview for DSM-IV Axis II Personality Disorders, (SCID-II). American Psychiatric Press, Inc, Washington, DC; 1997.
• [46]First MB, Spitzer RL, Gibbon M, Williams JBW: Structured Clinical Interview for DSM-IV Axis I Disorders, Clinician Version (SCID-CV). American Psychiatric Press, Inc, Washington, DC; 1996.
• [47]Nicholson TRJ, Cutter W, Hotopf M: Assessing mental capacity: the Mental Capacity Act. BMJ 2008, 336(7639):322-325.
• [48]Gale NK, Heath G, Cameron E, Rashid S, Redwood S: Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol 2013, 13:117.
• [49]Lewins A, Silver C: Using software in qualitative research: A step-by-step guide. Sage, London; 2007.
• [50]van der Voort TY, Goossens PJ, van der Bijl JJ: Alone together: A grounded theory study of experienced burden, coping, and support needs of spouses of persons with a bipolar disorder. Int J Ment Health Nurs 2009, 18(6):434-443.
• [51]Eisner E, Barrowclough C, Lobban F, Drake R: Qualitative investigation of targets for and barriers to interventions to prevent psychosis relapse. BMC Psychiatry 2014, 14(1):201.
• [52]Kaas MJ, Suzanne L, Peitzinan C: Barriers to Collaboration Between Mental Health Professionals and Families in the Care of Persons with Serious Mental Illness. Issues Ment Health Nurs 2003, 24(8):741.
• [53]Winefield HR, Burnett PL: Barriers to an alliance between family and professional caregivers in chronic schizophrenia. J Ment Health 1996, 5(3):223-232.
• [54]Wong DFK: Stress factors and mental health of carers with relatives suffering from schizophrenia in Hong Kong: implications for culturally sensitive practices. Br J Soc Work 2000, 30(3):365-382.
• [55]Time-to-Change. Family matters: A report into attitudes towards mental health problems in the South Asian community in Harrow, North West London. London: Time-to-Change; 2011.
• [56]Herrman H, Saxena S, Moodie R: Promoting Mental Health: Concepts, Emerging Evidence, Practice. Report of the WHO, Department of Mental Health and Substance Abuse in collaboration with the Victorian Health Promotion Foundation and the University of Melbourne. Organisation WH, Geneva, Switzerland; 2005.
• [57]Rowe J: Great expectations: a systematic review of the literature on the role of family carers in severe mental illness, and their relationships and engagement with professionals. J Psychiatr Ment Health Nurs 2012, 19(1):70-82.
• [58]Stiberg E, Holand U, Olstad R, Lorem G: Teaching Care and Cooperation with Relatives: Video as a Learning Tool in Mental Health Work. Issues Ment Health Nurs 2012, 33(8):528-535.
• [59]Dixon LB, McFarlane WR, Lefley H, Lucksted A, Cohen M, Falloon I, Mueser K, Miklowitz D, Solomon P, Sondheimer D: Evidence-based practices for services to families of people with psychiatric disabilities. Psychiatr Serv 2001, 52(7):903-910.
• [60]Allison S, Fadden G, Hart D, Launer M, Siddle J: Carers and confidentiality in mental health. Issues involved in information sharing. In Partners in Care Campaign. Royal College of Psychiatrists, London; 2004.
• [61]Cordess C: Confidentiality and Mental Health. Jessica Kingsley Publishers, London; 2001.
• [62]Pinfold V, Corry P: Who cares? The experiences of mental health carers accessing services and information. Rethink Publication, London; 2003.
• [63]Slade M, Pinfold V, Rapaport J, Bellringer S, Banerjee S, Kuipers E, Huxley P: Best practice when service users do not consent to sharing information with carers. Brit J Psychiatry 2007, 190(2):148-155.
• [64]Pinfold V, Farmer P, Rapaport J, Bellringer S, Huxley P, Murray J, Banerjee S, Slade M, Kuipers E, Bhugra D, et al.: Positive and Inclusive? Effective ways for professionals to involve carers in information sharing. Rethink severe mental illness, Kingston-Upon-Thames; 2004.
• [65]Bauer MS: A review of quantitative studies of adherence to mental health clinical practice guidelines. Harv Rev Psychiatry 2002, 10(3):138-153.
• [66]Francke A, Smit M, de Veer A, Mistiaen P: Factors influencing the implementation of clinical guidelines for health care professionals: A systematic meta-review. BMC Med Inform Decis Mak 2008, 8(1):38.
• [67]Kim HW, Salyers MP: Attitudes and Perceived Barriers to Working with Families of Persons with Severe Mental Illness: Mental Health Professionals’ Perspectives. Community Ment Hlt J 2008, 44(5):337-345.
• [68]Heru AM: Basic Family Skills for an Inpatient Psychiatrist: Meeting Accreditation Council for Graduate Medical Education Core Competency Requirements. Fam Syst Health 2004, 22(2):216-227.
• [69]Cleary M, Horsfall J, Happell B: Establishing clinical supervision in acute mental health inpatient units: acknowledging the challenges. Issues Ment Health Nurs 2010, 31(8):525-531.
• [70]Fazio RH, Pietri ES, Rocklage MD, Shook NJ: Chapter Three - Positive Versus Negative Valence: Asymmetries in Attitude Formation and Generalization as Fundamental Individual Differences. In Advances in Experimental Social Psychology. Volume 51. Edited by James MO. Academic, Mark PZ; 2015:97-146.
• [71]McLennan D, Barnes H, Noble M, Davies J, Garratt E, Dibben C: The English Indices of Deprivation 2010. Department for Communities and Local Government. Her Majesty’s Stationery Office, London; 2011.