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BMC Health Services Research
Published in: BMC Health Services Research 1/2017

Open Access 01-12-2017 | Research article

Worlds apart? A scoping review addressing different stakeholder perspectives on barriers to family involvement in the care for persons with severe mental illness

Authors: Elleke Landeweer, Bert Molewijk, Marit Helene Hem, Reidar Pedersen

Published in: BMC Health Services Research | Issue 1/2017

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Abstract

Background

Empirical evidence shows that family involvement (FI) can play a pivotal role in the coping and recovery of persons with severe mental illness (SMI). Nevertheless, various studies demonstrate that FI in mental healthcare services is often not (sufficiently) realized. In order to develop more insights, this scoping review gives an overview of how various stakeholders conceptualize, perceive and experience barriers to FI. Central questions are: 1) What are the main barriers to FI reported by the different key stakeholders (i.e. the persons with SMI, their families and the professionals, and 2) What are the differences and similarities between the various stakeholders’ perspectives on these barriers.

Methods

A systematic search into primary studies regarding FI was conducted in four databases: Medline/Pubmed, Cinahl, PsychInfo and Web of Knowledge with the use of a PICO scheme. Thematic analysis focused on stakeholder perspectives (i.e. which stakeholder group reports the barrier) and types of barriers (i.e. which types of barriers are addressed).

Results

Thirty three studies were included. The main barriers reported by the stakeholder groups reveal important similarities and differences between the stakeholder groups and were related to: 1) the person with SMI, 2) the family, 3) the professionals, 4) the organization of care and 5) the culture-paradigm.

Discussion

Our stakeholder approach elicits the different stakeholders’ concepts, presuppositions and experiences of barriers to FI, and gives fundamental insights on how to deal with barriers to FI. The stakeholders differing interpretations and perceptions of the barriers related to FI is closely related to the inherent complexity involved in FI in itself. In order to deal better with these barriers, openly discussing and reflecting upon each other’s normative understandings of barriers is needed.

Conclusions

Differences in perceptions of barriers to FI can itself be a barrier. To deal with barriers to FI, a dialogical approach on how the different stakeholders perceive and value FI and its barriers is required. Methods such as moral case deliberation or systematic ethics reflections can be useful.
Appendix
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Literature
1.
Szmukler GI, Bloch S. Family involvement in the care of people with psychoses. An ethical argument. Br J Psychiatry. 1997;171(5):401–5.CrossRefPubMed
2.
Pharoah F, Mari J, Rathbone J, Wong W. Family intervention for schizophrenia. The Cochrane database of systematic reviews. 2010(12):Cd000088.
3.
Lucksted A, McFarlane W, Downing D, Dixon L, Adams C. Recent developments in family psychoeducation as an evidence-based practice. J Marital Fam Ther. 2012;38(1):101–21.CrossRefPubMed
4.
Lincoln TM, Wilhelm K, Nestoriuc Y. Effectiveness of psychoeducation for relapse, symptoms, knowledge, adherence and functioning in psychotic disorders: a meta-analysis. Schizophr Res. 2007;96(1-3):232–45.CrossRefPubMed
5.
Alison M, Heru MD. Family Psychiatry: From Research to Practice. Am J Psychiatr. 2006;163(6):962–8.CrossRef
6.
Macleod SH, Elliott L, Brown R. What support can community mental health nurses deliver to carers of people diagnosed with schizophrenia? Findings from a review of the literature. Int J Nurs Stud. 2011;48(1):100–20.CrossRefPubMed
7.
Lobban F, Postlethwaite A, Glentworth D, Pinfold V, Wainwright L, Dunn G, et al. A systematic review of randomised controlled trials of interventions reporting outcomes for relatives of people with psychosis. Clin Psychol Rev. 2013;33(3):372–82.CrossRefPubMed
8.
Pulice RT, McCormick LL, Dewees M. A Qualitative Approach To Assessing The Effects Of System Change On Consumers, Families, And Providers. Psychiatr Serv. 1995;46(6):575–9.CrossRefPubMed
9.
Brand U. European perspectives: a carer’s view. Acta Psychiatr Scand. 2001;104:96–101.CrossRef
10.
11.
Wallcraft J, Amering M, Freidin J, Davar B, Froggatt D, Jafri H, 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):229–36.CrossRefPubMedPubMedCentral
12.
Marshall TB, Solomon P. Releasing information to families of persons with severe mental illness: a survey of NAMI members. Psychiatr Serv. 2000;51(8):1006–11.CrossRefPubMed
13.
Eassom E, Giacco D, Dirik A, Priebe S. Implementing family involvement in the treatment of patients with psychosis: a systematic review of facilitating and hindering factors. BMJ Open. 2014;4(10):e006108.CrossRefPubMedPubMedCentral
14.
Mairs H, Bradshaw T. Implementing family intervention following training: what can the matter be? J Psychiatr Ment Health Nurs. 2005;12(4):488–94.CrossRefPubMed
15.
16.
Walker MU. Moral Understandings. In: A Feminist Study in Ethics. 2nd ed. New York: Oxford University Press; 2007.
17.
Droste S, Dintsios CM, Gerber A. Information on ethical issues in health technology assessment: how and where to find them. Int J Technol Assess Health Care. 2010;26(4):441–9.CrossRefPubMed
18.
Murray-Swank A, Glynn S, Cohen AN, Sherman M, Medoff DP, Fang LJ, et al. Family contact, experience of family relationships, and views about family involvement in treatment among VA consumers with serious mental illness. J Rehabil Res Dev. 2007;44(6):801–11.CrossRefPubMed
19.
Cohen AN, Glynn SM, Hamilton AB, Young AS. Implementation of a Family Intervention for Individuals with Schizophrenia. J Gen Intern Med. 2010;25:32–7.CrossRefPubMedPubMedCentral
20.
Cohen AN, Drapalski AL, Glynn SM, Medoff D, Fang LJ, Dixon LB. Preferences for family involvement in care among consumers with serious mental illness. Psychiatr Serv. 2013;64(3):257–63.CrossRefPubMed
21.
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.CrossRefPubMedPubMedCentral
22.
Chatzidamianos G, Lobban F, Jones S. A qualitative analysis of relatives', health professionals' and service users' views on the involvement in care of relatives in Bipolar Disorder. BMC Psychiatry. 2015;15(1):228.CrossRefPubMedPubMedCentral
23.
EnglandKennedy ES, Horton S. "Everything that I thought that they would be, they weren't:" Family systems as support and impediment to recovery. Soc Sci Med. 2011;73(8):1222–9.CrossRefPubMed
24.
Rose LE, Mallinson RK, Walton-Moss B. Barriers to family care in psychiatric settings. J Nurs Scholarsh. 2004;36(1):39–47.CrossRefPubMed
25.
Hackethal V, Spiegel S, Lewis-Fernandez R, Kealey E, Salerno A, Finnerty M. Towards a cultural adaptation of family psychoeducation: findings from three latino focus groups. Community Ment Health J. 2013;49(5):587–98.CrossRefPubMed
26.
Petrakis M, Bloom H, Oxley J. Family perceptions of benefits and barriers to first episode psychosis carer group participation. Soc Work Ment Health. 2014;12(2):99–116.CrossRef
27.
Biegel DE, Shafran RD, Johnsen JA. Facilitators and barriers to support group participation for family caregivers of adults with mental illness. Community Ment Health J. 2004;40(2):151–66.CrossRefPubMed
28.
Cree L, Brooks HL, Berzins K, Fraser C, Lovell K, Bee P. Carers' experiences of involvement in care planning: a qualitative exploration of the facilitators and barriers to engagement with mental health services. BMC Psychiatry. 2015;15:208.CrossRefPubMedPubMedCentral
29.
McCann TV, Lubman DI, Clark E. Primary caregivers' satisfaction with clinicians' response to them as informal carers of young people with first-episode psychosis: a qualitative study. J Clin Nurs. 2012;21(1/2):224–31. 8p.CrossRefPubMed
30.
Outram S, Harris G, Kelly B, Bylund CL, Cohen M, Landa Y, et al. 'We didn't have a clue': Family caregivers' experiences of the communication of a diagnosis of schizophrenia. Int J Soc Psychiatry. 2015;61(1):10–6.CrossRefPubMed
31.
Hungerford C, Richardson F. Operationalising Recovery-oriented services: The challenges for carers. Adv Ment Health. 2013;12(1):11–21.CrossRef
32.
Drapalski AL, Marshall T, Seybolt D, Medoff D, Peer J, Leith J, et al. Unmet needs of families of adults with mental illness and preferences regarding family services. Psychiatr Serv. 2008;59(6):655–62.CrossRefPubMed
33.
Kaas MJ, Lee S, Peitzman 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):741–56.CrossRefPubMed
34.
Kavanagh DJ, Piatkowska O, Clark D, O'Halloran P, Manicavasagar V, Rosen A, et al. Application of cognitive-behavioural family intervention for schizophrenia in multidisciplinary teams: What can the matter be? Aust Psychol. 1993;28(3):181–8.CrossRef
35.
Nilsen L, Norheim I, Frich JC, Friis S, Rossberg JI. Challenges for group leaders working with families dealing with early psychosis: a qualitative study. BMC Psychiatry. 2015;15:141.CrossRefPubMedPubMedCentral
36.
Blomqvist M, Ziegert K. 'Family in the waiting room': A Swedish study of nurses' conceptions of family participation in acute psychiatric inpatient settings. Int J Ment Health Nurs. 2011;20(3):185–94.CrossRefPubMed
37.
Gall SH, Atkinson J, Elliott L, Johansen R. Supporting carers of people diagnosed with schizophrenia: evaluating change in nursing practice following training. J Adv Nurs. 2003;41(3):295–305.CrossRefPubMed
38.
Ruffolo MC, Capobianco J. Moving an evidence-based intervention into routine mental health care: a multifaceted case example. Soc Work Health Care. 2012;51(1):77–87.CrossRefPubMed
39.
Chen FP. A fine line to walk: case managers' perspectives on sharing information with families. Qual Health Res. 2008;18(11):1556–65.CrossRefPubMed
40.
Beecher B. Mental health practitioners' views of the families of individuals with schizophrenia and barriers to collaboration: a mixed methods study. J Fam Soc Work. 2009;12(3):264–82. 19p.CrossRef
41.
Kim HW, Salyers M. Attitudes and Perceived Barriers to Working with Families of Persons with Severe Mental Illness: Mental Health Professionals' Perspectives. Community Ment Health J. 2008;44(5):337–45.CrossRefPubMed
42.
Tompson MC, Rea MM, Goldstein MJ, Miklowitz DJ, Weisman AG. Difficulty in implementing a family intervention for bipolar disorder: the predictive role of patient and family attributes. Fam Process. 2000;39(1):105–20.CrossRefPubMed
43.
Weimand BM, Sallstrom C, Hall-Lord ML, Hedelin B. Nurses' dilemmas concerning support of relatives in mental health care. Nurs Ethics. 2013;20(3):285–99.CrossRefPubMed
44.
Magliano L, Fiorillo A, Fadden G, Gair F, Economou M, Kallert T, et al. Effectiveness of a psychoeducational intervention for families of patients with schizophrenia: preliminary results of a study funded by the European Commission. World Psychiatry. 2005;4(1):45–9.PubMedPubMedCentral
45.
Outram S, Harris G, Kelly B, Cohen M, Bylund CL, Landa Y, et al. Contextual barriers to discussing a schizophrenia diagnosis with patients and families: need for leadership and teamwork training in psychiatry. Acad Psychiatry. 2015;39(2):174–80.CrossRefPubMed
46.
Bailey R, Burbach FR, Lea SJ. The ability of staff trained in family interventions to implement the approach in routine clinical practice. J Ment Health. 2003;12(2):131–41.CrossRef
47.
Fadden G. Implementation of family interventions in routine clinical practice following staff training programs: A major cause for concern. J Ment Health. 1997;6(6):599–612.CrossRef
48.
Strand J, Olin E, Tidefors I. Mental health professionals' views of the parents of patients with psychotic disorders: a participant observation study. Health SocCare Community. 2015;23(2):141–9. 9p.
49.
Park M, Chesla C. Understanding Complexity of Asian American Family Care Practices. Arch Psychiatr Nurs. 2010;24(3):189–201.CrossRefPubMed
50.
Frank F, Rummel-Kluge C, Berger M, Bitzer EM, Holzel LP. Provision of group psychoeducation for relatives of persons in inpatient depression treatment - a cross-sectional survey of acute care hospitals in Germany. Bmc Psychiatry. 2014;14:143. doi:10.​1186/​1471-244X-14-143.
51.
Nicholls E, Pernice R. Perceptions of the relationship between mental health professionals and family caregivers: has there been any change? Issues Ment Health Nurs. 2009;30(8):474–81.CrossRefPubMed
52.
Grimshaw JM, Eccles MP, Lavis JN, Hill SJ, Squires JE. Knowledge translation of research findings. Implement Sci. 2012;7(1):1–17.CrossRef
Metadata
Title
Worlds apart? A scoping review addressing different stakeholder perspectives on barriers to family involvement in the care for persons with severe mental illness
Authors
Elleke Landeweer
Bert Molewijk
Marit Helene Hem
Reidar Pedersen
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2017
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-017-2213-4

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