Evaluation of the acceptability and usefulness of an information website for caregivers of people with bipolar disorder

BMC Medicine

Anthony Francis Jorm³  Stefan Cvetkovski³  Claire Kelly¹  Seetal Dodd⁴  Michael Berk²  Lesley Berk⁴ 

[1]School of Psychology, Deakin University, Melbourne, Victoria, Australia

[2]Florey Institute for Neuroscience and Mental Health, University of Melbourne, Parkville, Victoria, Australia

[3]Melbourne School of Population Health, University of Melbourne, Parkville, Victoria, Australia

[4]Swanston Centre, Barwon Health, Geelong, Victoria, Australia

关键词: Website for caregivers;    Website evaluation;    Information website;    Guidelines for caregivers;    Evaluation by users;    Disseminate guidelines;    Control appraisals;    Caregivers;    Caregiver burden;    Bipolar disorder;   

Others  :  856960
DOI  :  10.1186/1741-7015-11-162

 received in 2013-01-10, accepted in 2013-06-13,  发布年份 2013

【 摘 要 】

Background

Bipolar disorder is associated with extreme mood symptoms, disability and suicide risk. Close family or friends often have a primary role in supporting an adult with bipolar disorder. However, not all support is helpful and there is little publicly accessible evidence-based information to guide caregivers. Caregiver burden increases the risk of caregiver depression and health problems. To help fill the information gap, expert clinicians, caregivers and consumers contributed to the development of guidelines for caregivers of adults with bipolar disorder using the Delphi consensus method. This paper reports on an evaluation of the acceptability and usefulness of the online version of the guidelines, http://www.bipolarcaregivers.org webcite.

Methods

Visitors to the website responded to an initial online survey about the usefulness of the information (N = 536). A more detailed follow-up feedback survey was emailed to web users who were adult caregivers of adults with bipolar disorder a month later (N = 121). The feedback was analyzed quantitatively and qualitatively to establish user appraisals of the online information, whether and how caregivers applied the information and ways it could be improved.

Results

The majority of users (86.4% to 97.4%) found the various sections of the website useful. At follow-up, nearly 93% of caregivers reported that the information was relevant to them and 96% thought it would help others. Most respondents said that the information was supportive and encouraged adaptive control appraisals. However, a few respondents who were experiencing complex family problems, or who cared for a person with severe chronic bipolar disorder did not appraise it as positively. Nevertheless, over two-thirds of the caregivers reported using the information. Optional interactive features were recommended to maximize benefits.

Conclusions

Overall, http://www.bipolarcaregivers.org webcite was appraised positively and used. It appears useful to close family and friends seeking basic information and reassurance, and may be an inexpensive way to disseminate guidelines for caregivers. Those who care for people with more severe and chronic bipolar disorder, or who have complex family problems might benefit from more specialized interventions, suggesting the importance of a stepped-care approach to supporting caregivers. The potential of evidence-based, collaboratively developed information websites to enhance caregiver and consumer outcomes merits further investigation.

【 授权许可】

   
2013 Berk et al.; licensee BioMed Central Ltd.

【 图 表 】

【 参考文献 】

• [1]Kerr C, Murray E, Stevenson F, Gore C, Nazareth I: Internet interventions for long-term conditions: patient and caregiver quality criteria. J Med Internet Res 2006, 8:e13.
• [2]Drapalski AL, Marshall T, Seybolt D, Medoff D, Peer J, Leith J, Dixon LB: Unmet needs of families of adults with mental illness and preferences regarding family services. Psychiatr Serv 2008, 59:655-662.
• [3]Judd LL, Schettler PJ: The long-term course and clinical management of bipolar I and bipolar II disorder. In Bipolar Disorder: Clinical and Neurobiological Foundations. Edited by Yatham L, Maj M. Chichester, UK: John Wiley and Sons Ltd; 2010:17-30.
• [4]Kupka RW, Altshuler LL, Nolen WA, Suppes T, Luckenbaugh DA, Leverich GS, Frye MA, Keck PE Jr, McElroy SL, Grunze H, Post RM: Three times more days depressed than manic or hypomanic in both bipolar I and bipolar II disorder. Bipolar Disord 2007, 9:531-535.
• [5]Gutierrez-Rojas L, Jurado D, Gurpegui M: Factors associated with work, social life and family life disability in bipolar disorder patients. Psychiatry Res 2011, 186:254-260.
• [6]Reinares A, Vieta E, Colom F, Martinez-Aran A, Torrent C, Comes A, Goikolea JM, Benabarre A, Daban C, Sanchez-Moreno J: What really matters to bipolar patients’ caregivers: sources of family burden. J Affect Disord 2006, 94:157-163.
• [7]Pirkis J, Burgess P, Hardy J, Harris M, Slade T, Johnston A: Who cares? A profile of people who care for relatives with a mental disorder. Aust N Z J Psychiatry 2010, 44:929-937.
• [8]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, 19:70-82.
• [9]Wilkinson C, McAndrew S: ‘I’m not an outsider, I’m his mother!’ A phenomenological enquiry into carer experiences of exclusion from acute psychiatric settings. Int J Ment Health Nurs 2008, 17:392-401.
• [10]Wynaden D, Orb A: Impact of patient confidentiality on carers of people who have a mental disorder. Int J Ment Health Nurs 2005, 14:166-171.
• [11]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, 11:172. BioMed Central Full Text
• [12]Van der Voort T, Goossens P, Van Der Bijl J: Burden, coping and needs for support of caregivers for patients with a bipolar disorder: a systematic review. J Psychiatr Ment Health Nurs 2007, 14:679-687.
• [13]Cuijpers P, Stam H: Burnout among relatives of psychiatric patients attending psychoeducational support groups. Psychiatr Serv 2000, 51:375-379.
• [14]Perlick D, Clarkin JF, Sirey J, Raue P, Greenfield S, Struening E, Rosenheck R: Burden experienced by caregivers of persons with bipolar affective disorder. Br J Psychiatry 1999, 175:56-62.
• [15]Perlick DA, Rosenheck RA, Miklowitz DJ, Chessick C, Wolff N, Kaczynski R, Ostacher M, Patel J, Desai R: Prevalence and correlates of burden among caregivers of patients with bipolar disorder enrolled in the Systematic Treatment Enhancement Program for Bipolar Disorder. Bipolar Disord 2007, 9:262-273.
• [16]Perlick DA, Rosenheck RA, Miklowitz DJ, Kaczynski R, Link B, Ketter T, Wisniewski S, Wolff N, Sachs G: Caregiver burden and health in bipolar disorder: a cluster analytic approach. J Nerv Ment Dis 2008, 196:484-491.
• [17]Michalak EE, Yatham LN, Kolesar S, Lam RW: Bipolar disorder and quality of life: a patient-centered perspective. Qual Life Res 2006, 15:25-37.
• [18]Russell SJ, Browne JL: Staying well with bipolar disorder. Aust N Z J Psychiatry 2005, 39:187-193.
• [19]Lam D, Donaldson C, Brown Y, Malliaris Y: Burden and marital and sexual satisfaction in the partners of bipolar patients. Bipolar Disord 2005, 7:431-440.
• [20]Wendel JS, Miklowitz DJ, Richards JA, George EL: Expressed emotion and attributions in the relatives of bipolar patients: an analysis of problem-solving interactions. J Abnorm Psychol 2000, 109:792-796.
• [21]Perlick D, Rosenheck R, Clarkin J, Maciejewski P, Sirey J, Struening E, Link B: Impact of family burden and affective response on clinical outcome among patients with bipolar disorder. Psychiatr Serv 2004, 55:1029.
• [22]Goossens PJ, Van Wijngaarden B, Knoppert-van DerKlein EA, Van Achterberg T: Family caregiving in bipolar disorder: caregiver consequences, caregiver coping styles, and caregiver distress. Int J Soc Psychiatry 2008, 54:303-316.
• [23]Sajatovic M, Levin J, Fuentes-Casiano E, Cassidy KA, Tatsuoka C, Jenkins JH: Illness experience and reasons for nonadherence among individuals with bipolar disorder who are poorly adherent with medication. Compr Psychiatry 2011, 52:280-287.
• [24]Miklowitz DJ, Johnson SL: Social and familial factors in the course of bipolar disorder: basic processes and relevant interventions. Clin Psychol 2009, 16:281-296.
• [25]Lucksted A, McFarlane W, Downing D, Dixon L: Recent developments in family psychoeducation as an evidence-based practice. J Marital Fam Ther 2012, 38:101-121.
• [26]Barnes C, Harvey R, Wilde A, Hadzi Pavlovic D, Wilhelm K, Mitchell PB: Review of the quality of information on bipolar disorder on the internet. Aust N Z J Psychiatry 2009, 43:934-945.
• [27]Kahn DA, Ross R, Printz DJ, Sachs GS: Treatment of bipolar disorder: a guide for patients and families. Postgrad Med 2004, 109-116.
• [28]Royal Australian and New Zealand College of Psychiatrists: Bipolar disorder: Australian treatment guide for consumers and carers. [http://www.ranzcp.org/Publications/guides-for-the-public/bipolar-disorder.aspx webcite]
• [29]Berk L, Jorm AF, Kelly CM, Dodd S, Berk M: Development of guidelines for caregivers of people with bipolar disorder: a Delphi expert consensus study. Bipolar Disord 2011, 13:556-570.
• [30]Franx G, Niesink P, Swinkels J, Burgers J, Wensing M, Grol R: Ten years of multidisciplinary mental health guidelines in the Netherlands. Int Rev Psych 2011, 23:371-378.
• [31]Gagliardi AR, Brouwers MC, Palda VA, Lemieux-Charles L, Grimshaw JM: Evidence from the Social Sciences by Link B, Cullen F, Mirotznik J, and Struening E. Implement Sci 2011, 6:26. BioMed Central Full Text
• [32]Australian Bureau of Statistics: Household use of Information Technology. [http://www.abs.gov.au/ausstats/abs@.nsf/mf/8146.0 webcite]
• [33]Fox S: Health Topics. Washington DC: Pew Research Center’s Internet & American Life Project; 2011.
• [34]Internet World Stats: Internet usage statistics. [http://www.internetworldstats.com/stats.htm webcite]
• [35]Reavley NJ, Cvetkovski S, Jorm AF: Sources of information about mental health and links to help seeking: findings from the 2007 Australian national survey of mental health and wellbeing. Soc Psychiatry Psychiatr Epidemiol 2011, 46:1267-1274.
• [36]Proudfoot J, Parker G, Hyett M, Manicavasagar V, Smith M, Grdovic S, Greenfield L: Next generation of self-management education: web-based bipolar disorder program. Aust N Z J Psychiatry 2007, 41:903-909.
• [37]Barak A, Grohol JM: Current and future trends in internet-supported mental health interventions. J Technol Hum Serv 2011, 29:155-196.
• [38]Barak A, Klein B, Proudfoot JG: Defining internet-supported therapeutic interventions. Ann Behav Med 2009, 38:4-17.
• [39]Morrison LG, Yardley L, Powell J, Michie S: What design features are used in effective e-health interventions? A review using techniques from Critical Interpretive Synthesis. Telemed J E-Health 2012, 18:137-144.
• [40]Sillence E, Briggs P, Harris P, Fishwick L: Going online for health advice: changes in usage and trust practices over the last five years. Interact Comput 2007, 19:397-406.
• [41]Wang Z, Walther JB, Pingree S, Hawkins RP: Health information, credibility, homophily, and influence via the internet: web sites versus discussion groups. Health Commun 2008, 23:358-368.
• [42]Brouwers MC, Kho ME, Browman GP, Burgers JS, Cluzeau F, Feder G, Fervers B, Graham ID, Grimshaw J, Hanna SE, Littlejohns P, Makarski J, Zitzelsberger L, AGREE Next Steps Consortium: AGREE II: advancing guideline development, reporting and evaluation in health care. CMAJ 2010, 182:E839.
• [43]Reavley NJ, Jorm AF: The quality of mental disorder information websites: a review. Patient Educ Couns 2011, 85:e16.
• [44]Gratsa A, Spiller MJ, Holt G, Joyce T, Hardy S, Bouras N: Developing a mental health guide for families and carers of people with intellectual disabilities. J Appl Res Intellect Disabil 2007, 20:77-86.
• [45]Steimle BM, Duncan SF: Formative evaluation of a family life education web site. Fam Relat 2004, 53:367-376.
• [46]Cameron KA, de Haes H, Visser A: A practioners guide to persuasion: an overview of 15 selected persuasion theories, models and frameworks. Patient Educ Couns 2009, 74:309-317.
• [47]Sánchez Fernández J, Muñoz Leiva F, Montoro Ríos FJ: Improving retention rate and response quality in web-based surveys. Comput Human Behav 2012, 28:507-514.
• [48]Ostlund U, Kidd L, Wengström Y, Rowa Dewar N: Combining qualitative and quantitative research within mixed method research designs: a methodological review. Int J Nurs Stud 2011, 48:369-383.
• [49]Jorm AF: Mental health literacy: empowering the community to take action for better mental health. Am Psychol 2012, 67:231-243.
• [50]Prochaska JO, DiClemente CC: Stages and processes of self-change of smoking: toward an integrative model of change. J Consult Clin Psychol 1983, 51:390-395.
• [51]Hart LM, Jorm AF, Paxton SJ, Cvetkovski S: Mental health first aid guidelines: an evaluation of impact following download from the world wide web. Early Interv Psychiatry 2012, 6:399-406.
• [52]Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD: Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev 2006., 3CD004563
• [53]Lobban F, Glentworth D, Haddock G, Wainwright L, Clancy A, Bentley R: The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT). J Ment Health 2011, 20:567-579.
• [54]O’Connell B, Heslop L, Fennessy H: An evaluation of a wellness guide for older carers living in the community. Public Health Nurs 2010, 27:302-309.
• [55]Miklowitz DJ: The role of the family in the course and treatment of bipolar disorder. Curr Dir Psychol Sci 2007, 16:192-196.
• [56]Reinares M, Vieta E, Colom F, Martinez-Aran A, Torrent C, Comes M, Goikolea J, Benabarre A, Sanchez-Moreno J: Impact of a psychoeducational family intervention on caregivers of stabilized bipolar patients. Psychother Psychosom 2004, 73:312-319.
• [57]Ryan RM, Deci EL: Self-determination theory and the facilitation of intrinsic motivation, social development, and well-being. Am Psychol 2000, 55:68-78.
• [58]Eisner LR, Johnson SL: An acceptance-based psychoeducation intervention to reduce expressed emotion in relatives of bipolar patients. Behav Ther 2008, 39:375-385.
• [59]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, 12:627-637.
• [60]Perlick DA, Miklowitz DJ, Link BG, Struening E, Kaczynski R, Gonzalez J, Manning LN, Wolff N, Rosenheck RA: Perceived stigma and depression among caregivers of patients with bipolar disorder. Br J Psychiatry 2007, 190:535-536.
• [61]Lakey B, Orehek E: Relational regulation theory: a new approach to explain the link between perceived social support and mental health. Psychol Rev 2011, 118:482-495.
• [62]Marroquin B: Interpersonal emotion regulation as a mechanism of social support in depression. Clin Psychol Rev 2011, 31:1276-1290.
• [63]Thoits PA: Mechanisms linking social ties and support to physical and mental health. J Health Soc Behav 2011, 52:145-161.
• [64]Nambisan P: Information seeking and social support in online health communities: impact on patients’ perceived empathy. J Am Med Inform Assoc 2011, 18:298-304.
• [65]Janz NK, Becker MH: The Health Belief Model: a decade later. Health Educ Q 1984, 11:1-47.
• [66]Kreuter M, Wray R: Tailored and targeted health communication: strategies for enhancing information relevance. Am J Health Behav 2003, 27:227-232.
• [67]Namkoong K, DuBenske L, Shaw B, Gustafson D, Hawkins R, Shah D, McTavish F, Cleary J: Creating a bond between caregivers online: effect on caregivers’ coping strategies. J Health Commun 2012, 17:125-140.
• [68]Berk M, Kapczinski F, Andreazza AC, Dean OM, Giorlando F, Maes M, Yücel M, Gama CS, Dodd S, Dean B, Magalhães PV, Amminger P, McGorry P, Malhi GS: Pathways underlying neuroprogression in bipolar disorder: focus on inflammation, oxidative stress and neurotrophic factors. Neurosci Biobehav Rev 2011, 35:804-817.
• [69]Reinares M, Papachristou E, Harvey P, Mar Bonnin C, Sanchez-Moreno J, Torrent C, Ayuso-Mateos JL, Ploubidis GB, Vieta E, Frangou S: Towards a clinical staging for bipolar disorder: defining patient subtypes based on functional outcome. J Affect Disord 2013, 144:65-71.
• [70]Reinares M, Colom F, Rosa AR, Bonnin CM, Franco C, Sole B, Kapczinski F, Vieta E: The impact of staging bipolar disorder on treatment outcome of family psychoeducation. J Affect Disord 2010, 123:81-86.
• [71]Miklowitz D, Goodwin G, Bauer M, Geddes J: Common and specific elements of psychosocial treatments for bipolar disorder: a survey of clinicians participating in randomized trials. J Psychiatr Pract 2008, 14:77-85.
• [72]Berger M, Wagner TH, Baker LC: Internet use and stigmatized illness. Soc Sci Med 2005, 61:1821-1827.
• [73]Link B, Cullen F, Mirotznik J, Struening E: The consequences of stigma for persons with mental illness. In Evidence from the Social Sciences. Edited by Link B, Cullen F, Mirotznik J, Struening E. Washington DC: American Psychiatric Association; 1992:87-96.
• [74]Griffiths F, Lindenmeyer A, Powell J, Lowe P, Thorogood M: Why are health care interventions delivered over the internet? A systematic review of the published literature. J Med Internet Res 2006, 8:E10.
• [75]Ruggiero KJ, Gros DF, McCauley J, de Arellano MA, Danielson CK: Rural adults’ use of health-related information online: data from a 2006 National Online Health Survey. Telemed J E Health 2011, 17:329-334.
• [76]Fricker RD, Schonlau M: Advantages and disadvantages of internet research surveys: evidence from the literature. Field Methods 2002, 14:347-367.