Abstract
Background:
Contemporary mental health policies require family inclusion in the design, implementation and evaluation of services.
Materials:
This scoping review considers the factors in mental health practice which either mediate or promote family inclusion. A wide range of factors are reported to obstruct family inclusion, while a smaller number of studies report that meaningful family inclusion rests on a partnership approach which values the input of families and services users.
Discussion:
When it comes to family inclusion, there is a gap between policy and service delivery practice. Changes in service delivery attitudes, values and culture are necessary to meaningfully and systematically include families and service users.
Background
The World Health Organization (2004) recommends partnerships between mental health service providers, service users and families to improve service quality and enhance the empowerment and involvement of service users and families. The principle of family inclusion is embedded in mental health policies, frameworks and standards and reflects a rights-based discourse which highlights the positive impact of meaningful partnerships with families (Bland & Foster, 2012). The experiences, roles and influence of families are often overlooked in mental health services (Lee, Crowther, Keating, & Kulkarni, 2013). While involvement of service users is often below par, family participation is even less evident and considered more ‘challenging’ (Lammers & Happell, 2004b). Given this, the authors scoped and critically examined literature about family inclusion in the delivery of mental health services.
Discourses about caring, constructs of personal recovery, the needs of families and service users, family ambivalence about providing support and the way in which language defines and positions families all suggest that family inclusion is not a straightforward notion. The conceptualisation of family is inconsistent in policy and service delivery (Bland & Foster, 2012) and this can amplify the ‘hidden carer’ status of same-sex partners or friends considered ‘family’ by service users. Family caring can be framed as a burden (England Kennedy & Horton, 2011), which obscures the role families often play in an individual’s recovery journey (Cohen et al., 2013). Although personal recovery emphasises autonomy, responsibility and self-determination, it is nevertheless located in the context of community, family and other relationships (Slade, 2009; Topor, Borg, Di Girolamo, & Davidson, 2011). While it is well documented that the concept of family recovery is neglected (Spaniol & Nelson, 2015), it is argued to be important (Wyder & Bland, 2014). As with individual recovery, it can take many forms and likely to be a non-linear and unique process for each family member (Spaniol & Nelson, 2015). At its simplest, it involves families having the opportunity to explore and make meaning of their experiences in order to integrate and transform (Spaniol, 2010). Furthermore, it is argued that meaningful involvement in service user’s ‘care’ can facilitate family recovery (Wilkinson & McAndrew, 2008).
Although service user and family inclusion are pillars of mental health policy, the rights and needs of the two stakeholders are often positioned as competing (Furlong, 2001). Furthermore, it is recognised that not all family members or service users desire family inclusion. Undeniably, some service users reject family involvement due to trauma, conflict and fragmentation within the family. Some families are ambivalent about providing ‘care’ and this is arguably an understandable response when faced with a loved one’s long-term needs (Luscher, 2004).
As in all fields, language informs and mediates the construction of key concepts and reflects particular sociocultural contexts. Given this the terms used in this article are explained in Table 1, and we note that these terms can vary across cultural and geographical settings.
Terminology.
This scoping review was the first research activity in a project called In Community which emerged from a Western Australian partnership between Mental Health Matters 2, a grassroots, voluntary advocacy group and Richmond Wellbeing, a not-for-profit mental health organisation. In Community was based on principles of coproduction in service design and delivery for individuals and families who experience multiple unmet needs (problematic mental and physical health, substance misuse and criminal justice system involvement). Representatives from these two groups formed a project steering group (PSG). This article scopes and critically reviews literature about the principles, practices and strategies which mediate or promote meaningful family involvement. While the broader project also focussed on multiple unmet needs, this article only examines family inclusion in the delivery of mental health services, and the search strategies reported here relate to family inclusion, not multiple unmet needs.
Method
A scoping review methodology was adapted in order to explore and understand the literature, determine relevant concepts and gaps, and map relevant forms of evidence (Daudt, van Mossel, & Scott, 2013, p. 8). We acknowledge that a wide range of terms, definitions and methods are associated with qualitative literature reviews, and many “fall short of being mutually exclusive” (Grant & Booth, 2009, p. 91). In this context, we aligned our work with the original scoping review framework proposed by Arksey and O’Malley (2005), with specific adaptations developed to fit the context of this project. For example, Arksey and O’Malley (2005) suggest that consultation (stage six) is optional and occurs later in the scoping review. However, the project’s values were grounded in Slay and Stephens’ (2013) coproduction principles, and thus involved a commitment to reciprocity and power sharing. The project values included the belief that recovery is possible; recognition of the heterogeneity of lived experience, identity and culture; person-centred practices promoting ‘no wrong door’ responses; collaborative, peer led, co-productive learning approaches; and a focus on making a sustainable long-term difference to people’s lives.
Thus, in practice, we recognised PSG members’ expertise by experience as complementing academic research expertise gained by qualification. We reported our academic progress back to the PSG on several occasions, and members brought their views, values and experience to each stage of the scoping review. We acknowledge that this is not a common approach, with academic protocols usually taking precedence over the voice of lived experience. However, we suggest that, with the increasing influence of service user and family expertise, researchers need to reconsider how stakeholder feedback informs the scoping review process (Levac, Colquhoun, & O’Brien, 2010). For us, this meant the PSG played an important role in setting the direction of the search strategy, and was a partner and co-leader of the project simultaneously.
The researchers conducted an initial scan of the literature (as recommended by Arksey & O’Malley, 2005; Colquhoun et al., 2014; Daudt et al., 2013). This material was shared with the PSG and used to refine the research question, search terms and strategy. Searching was limited to English language articles, reports and policy documents published before April 2015. So as to maximise capture of relevant literature, no lower date was set. The search involved six electronic databases: PsycINFO, ScienceDirect, Informit, Proquest, CINAHL and Google Scholar and this initial scan identified 1,115 documents. The titles and abstracts were reviewed by one researcher (SR) with this process highlighting the preponderance of unrelated material.
The preliminary results were discussed in supervision with the Chief Investigator (RM) and then shared with the PSG. Consensus was reached on excluding the topics on child protection, family recovery from substance misuse and family therapy with both partners agreeing they were extraneous to the scoping review. Agreement was also reached on excluding the literature on familial psychoeducation approaches and interventions. While psychoeducation can be considered a form of family inclusion, it does not usually position families as partners. Instead, it considers the practitioner as a subject matter expert who teaches families about topics such as emotional expression and boundaries. Similarly, the literature which uncritically accepts concepts such as family ‘dysfunction’, ‘carer burden’, and positions families as assistants in treatment compliance was considered out of scope because it did not reflect the values of co-production.
These regular and on-going discussions assisted the research team to refine key concepts and develop the following research question: What does the literature say about the nature of family inclusion in mental health practice? The research team then went on to remove duplicates and unrelated material, leaving 300 documents. Two researchers (SR and RM) examined the abstracts of these documents and reached consensual agreement that 76 of the 300 items met the inclusion criteria. Finally, removing articles with a sole focus on multiple unmet needs resulted in 59 documents which focussed on family inclusion in mental health practice. Table 2 details the search strategy and terms.
Search strategy and terms.
The 59 documents were then charted according to the year of study, aims, population, study design, sample, location, findings (Colquhoun et al., 2014), as well as alignment with the project values. Numerical scores were not allocated to criteria nor was the quality of data collection and analysis assessed. Rather, the findings and recommendations from literature were descriptively coded, thematically analysed and considered in terms of similarities, patterns and relationships (Arksey & O’Malley, 2005; Daudt et al., 2013). Analysis was informed by the project values, concepts of critical thinking and questions which focussed on inclusions, exclusions, taken-for-granted assumptions and normative positions. These activities were accompanied by reflexive conversations within the research team and with the PSG.
Results
Our review of the literature found that the skills, knowledge and attitudes of mental health practitioners are frequently cited as barriers to family inclusion (Cleary, Freeman, & Walter, 2006; Mannion et al., 2012). In addition, factors such as definitions of who or what constitutes family, ideas about ‘overinvolved’ families, the perceived helpfulness of families, alienating language, stigmatising attitudes and practices, and perceptions of increased workload when working with families were identified. When it comes to addressing these factors, partnership approaches with families which seek to share power and value lived experience are reported to underpin family-inclusive practice. It is also recognised that practitioners face multiple challenges, particularly when their workplaces do not support or encourage practices which value family involvement.
Factors mediating family involvement
It is reported that practitioners can rely on narrow definitions of family types and this can lead to the exclusion of non-nuclear family types and lack of recognition of their needs (Bland & Foster, 2012; National Mental Health Service User and Carer Forum, 2009). It is also noted that deeply held and unexamined practice theories which position families as ‘causing’ mental distress and relapse act against meaningful family inclusion (Bland & Foster, 2012; Rowe, 2012; Wyder & Bland, 2014). Similarly, practitioners’ frameworks of understanding may rest on ideas of family over-involvement which are seen to obstruct treatment plans and goals (Gray, Robinson, Seddon, & Roberts, 2008; Stanbridge & Burbach, 2007). Professional language can unintentionally de-personalise and alienate service users and families (Hitchen et al., 2011), with phrases such as ‘burden of care’ and ‘management’ of service users reported to be insensitive to the lived experience of both groups (Lammers & Happell, 2004b). Furthermore, it is asserted that family conflict or perceived ‘carer burden’ deter practitioners from involving families (Lakeman, 2008a; Mannion et al., 2012).
From a workload point of view, family inclusion is sometimes seen to create additional demands for practitioners (Goodwin & Happell, 2007a; Gray et al., 2008; Stanbridge & Burbach, 2007). Attitudes which are said to undermine family inclusion include ‘victim blaming, hostility … criticism … avoidance and rejection’ (O’Grady & Skinner, 2012, p. 1059). Furthermore, it is argued that many families desire collaborative partnerships with practitioners; yet, they report being framed as ‘problematic’ and ‘difficult’ if they advocate for their loved one or request involvement (Gray et al., 2008; Wilkinson & McAndrew, 2008). When families are involved and work alongside practitioners, they report reduced stress levels and improved wellbeing (Lakeman, 2008a). One suggestion is that some practitioners may feel family inclusion undermines their authority and knowledge base: “Knowledge is a source of power, and not sharing information with carers disempowers them, leaving health-care professionals free to maintain control over decision making” (Wilkinson & McAndrew, 2008, p. 398). On the other hand, the literature suggests that families feel disempowered by the dialectic of being expected to ‘care’ while, at the same time, often being excluded from decision-making (Gray et al., 2008; Rowe, 2012).
Practitioners face complex and ethically challenging situations regarding information sharing; particularly if consumers report abusive, fearful and conflictual situations with their families (National Mental Health Service User and Carer Forum, 2009). Such contexts sit alongside the many instances when consumers provide consent to the involvement of family (Goodwin & Happell, 2007b; Lakeman, 2008a; Tambuyzer & Audenhove, 2013). These binary positions create complexities requiring artful navigation on the part of the practitioner, with information sharing frequently cited as a barrier to family inclusion (Cleary et al., 2006; Gray et al., 2008; Wilkinson & McAndrew, 2008). The literature also highlights that practitioners can feel paralysed by the complex and often difficult to interpret, legal, ethical and policy requirements they face (Chan & O’Brien, 2011; Lammers & Happell, 2004a). It is argued that this situation can “contribute to a (largely unfounded) fear of litigation, which forces professionals to, in many cases, simply say nothing” (National Mental Health Service User and Carer Forum, 2009, p. 15). This is said to discourage practitioners from exploring the boundaries of confidentiality and leaves families feeling that the concept of confidentiality is a “smokescreen” (Chan & O’Brien, 2011, p. 387) precluding their involvement and creating significant frustration (Goodwin & Happell, 2007b). In situations where information is shared by practitioners without family or service user consent, it is reported to create family relationship fracture (Lammers & Happell, 2004a). One study argued that practitioners are more likely to share information with families in order to mitigate against risk to, or posed by, the service user (Gray et al., 2008).
Principles, practices and strategies promoting meaningful family involvement
Examples of meaningful and sustained family inclusion identified through this review are few in number. Those found are characterised by co-production principles which promote deep listening to the lived experience of families; a commitment to change organisational and service delivery cultures; a willingness to critically reflect upon and articulate problematic service delivery practices; a commitment to work in equal partnership with service users and family members; and an openness to acknowledge, articulate and address power relations (Hitchen et al., 2011; Repper & Perkins, 2013; Slay & Stephens, 2013; Tambuyzer & Audenhove, 2013).
One example of this is Open Dialogue which invites families to join in the planning of ‘treatment’ when their relative is first hospitalised. This approach positions families and service users as active participants in a shared process, which does not follow the usual approach of being led by the professional ‘expert’. Open Dialogue continues to evolve and is now deeply embedded in the Western Lapland psychiatric system where dialogue is regarded as the basis for all psychiatric ‘treatment’ (Seikkula & Arnkil, 2014). The results of a quasi-experimental evaluation of Open Dialogue involving two groups – one receiving traditional treatments such as psychiatric medications and another group receiving Open Dialogue show that two years after receiving Open Dialogue, 82% of participants had no or limited psychotic symptoms. In contrast, of the group who received traditional psychiatric treatments, 50% showed psychotic symptoms. The evaluation of Open Dialogue has not extended to the impact on, and experiences of, families; however, Seikkula (2008) argues that the approach facilitates the mobilisation of a family’s psychological resources instead of professionals taking over the ‘care’ of the consumer and inadvertently disempowering both the consumer and the family.
Good practice in relation to confidentiality is said to be based on balancing the service user’s right to privacy and the family’s request for information (Szmukler & Bloch, 1997). The literature shows that while families appreciate the limits to what practitioners can share, they believe that service providers can, at the minimum, listen to their concerns and value their lived experience (Lavoie-Tremblay et al., 2012; Wilkinson & McAndrew, 2008). Recommendations for diminishing the roadblocks associated with confidentiality include providing factual and relevant training on confidentiality legislation; improving organisational processes; monitoring practice and “normalising the concept of information-sharing” (National Mental Health Service User and Carer Forum, 2009, p. 36). On-going transparent conversations with service users about confidentiality and information sharing are recommended (Gray et al., 2008). Other suggestions to address these barriers include providing written information on confidentiality; adopting a rights-based approach; using recovery plans or advanced care directives; and facilitating dialogue with service users and family members about confidentiality (Gray et al., 2008). Furthermore, it is argued that good practice involves assessing each situation and determining what type of information is required and whether it is highly sensitive or of a more general nature (Gray et al., 2008).
While respecting the service user’s right to refuse family involvement, it is also proposed that some form of family engagement is still possible (David, 2011; Slade et al., 2007). It is proposed that in situations where a service user refuses family involvement, strategies such as exploring the decision with the service user; assessing their capacity to make informed decisions; communicating the decision to the family; exploring the implications of the decision with the family; and assessing and deciding if information needs to be shared, and with whom, can improve communication and information sharing processes (Slade et al., 2007).
Discussion
This literature review highlights that while family-inclusive mental health policies and frameworks are common, the challenges and obstacles to family-inclusive practice are plentiful.
Current status of family inclusion
In the few studies which evaluated the impact of family inclusion policies, it is reported that practitioners were inconsistent in their application of the policies and their commitment to family involvement (Lakeman, 2008b). Consequently, the widespread existence of frameworks and policies exhorting family inclusion appear to have had minimal impact (Hervey & Ramsay, 2004; Rowe, 2012). We therefore suggest that this gap between policy and practice is inadvertently and implicitly sanctioned and that, without mechanisms to ensure the active implementation and monitoring of family inclusion, family exclusion will continue. We believe this scoping review highlights the need to move away from the development of more policies and standards, and that widespread culture change is necessary to systematically embed meaningful involvement of both families and service users in the delivery of mental health services. Furthermore, our review indicates that practitioner attitudes and authority are not well understood. We are curious about why the practice of not involving families appears to remain safeguarded and relatively invisible in mental health research. We suggest that phenomenologically informed research could be of benefit in better understanding and examining practitioner experiences, attitudes and contexts (including the barriers to family inclusion). We think this type of research approach is more likely to create the conditions for dialogic approaches to emerge between families, service users and practitioners in order to improve inclusion and participation activities.
We also note that, despite the policy rhetoric about family inclusion, families are positioned as secondary to service users in practice. This suggests a binary of needs and interests which marginalises families and can, in turn, inhibit personal recovery for individuals and families. While acknowledging that the experiences, needs and recovery journeys for families and service users are different, they are also intertwined. We suggest that service users and their families need to be viewed as co-existing and interdependent, while recognising that each has unique needs and experiences.
Practical implications
Successful instances of family inclusion are characterised by dialogue and equal partnership. Meaningful partnerships are underpinned by principles of co-production and driven by a deeply ingrained belief in service user and family inclusion. We argue that meaningful family inclusion requires practitioners to step outside their professional positions, identities and privilege and join in co-production processes with service users and families (Repper & Perkins, 2013; Slay & Stephens, 2013). It is acknowledged that to step outside the known and familiar requires courage and that, despite the unwillingness on the part of some mental health services to involve families, there are practitioners who champion these stances in existing services. We also recognise that culture change of this order requires leadership, along with a widespread commitment to inclusion and adequate investment of resources. These can be challenging requirements in climates of dwindling resources but, given the policy imperatives regarding family inclusion, obstacles to system change are not acceptable explanations for a lack of action.
The issue of professional power warrants critical attention from practitioners and mental health services given they can choose to invite, disregard or partner with families and service users. If practitioners and organisations ignore the influence and reach of their power, families will struggle to be seen as credible and valuable contributors to the wellbeing of individual service users. As with changes to culture, taking a critical look at one’s professional power and authority can be unsettling and requires a supportive and encouraging environment. Similarly, outdated knowledge which locates the origins, indeed causation, of mental distress within family systems should be challenged by critical evaluation and contemporary evidence. Rather, when families speak up and advocate, practitioners could see this as an opportunity to learn more about the family and the service user. Such an approach demands a shift in attitudes and requires redefining roles, responsibilities and relationships as “co-productive, dialogical and dialectical partnership” (Dunston, Lee, Boud, Brodie, & Chiarella, 2009, p. 44). We reiterate that there are many practitioners who aspire to this type of practice, yet they face barriers to achieving this goal. This stance rejects the binaries of active and passive practitioners or families and involves professionals embracing the inherent competence, capability and capacity of service users and families. This requires a commitment to de-centring professional expertise, and has implications for the skill base and training of mental health professionals. Finally, this would position the dynamic between professionals, service users and families as “doing with, rather than doing to and doing for” (Dunston et al., 2009, p. 41).
The ability to effectively meet the needs of service users and families while balancing service users’ rights to confidentiality and familial requests for information is consistently referred to as a ‘tension’. However, clear and practical strategies and guidance have been developed which, if utilised, could lead to greater clarity for practitioners and in turn, service users and families. While a range of barriers to the inclusion of families have been found in this literature, it is the researchers’ opinion that there is limited in-depth and critical research as to why practitioners do not often include families. We suggest that critical examination by researchers and practitioners is urgently needed.
Limitations
Given the limitations of scoping reviews, we suggest that these findings are preliminary and could be used to empirically examine practices and factors associated with family inclusion in mental health practice. As quality assessment is not undertaken as part of scoping reviews, the material has been analysed and categorised in order to provide a synthesised narrative. Indicators of quality such as sample size, rigour of research methods and the like did not inform our decisions to include or exclude certain material. Rather, if and when literature met the identified criteria as informed by project values, it was included. Similarly, we acknowledge that being an industry-funded project as well as recognising the expertise of PSG members’ lived experience means their influence is evident and their views and values have informed the inclusion and exclusion criteria for the chosen literature. Finally, the methods associated with scoping reviews are not set in stone and continue to evolve. This means that there may be other literature review approaches which could have provided clearer structure and direction.
Conclusion
The inclusion of families in the delivery of mental health services is mandated internationally, yet evidence of meaningful, sustained partnerships in action is inadequate. The selected literature reveals the lived experience of exclusion, disempowerment, and invisibility of families and a range of perceived barriers relating to family inclusion. This review highlights how families are infrequently valued for their unique insights, despite the significant impacts associated with providing support. The successful examples of family-inclusive approaches are characterised by equal partnership; dialogic spaces; deep listening; creative responses to, and navigation of, confidentiality issues; and co-production principles. This review demonstrates that family-inclusive practice needs to be underpinned by a belief and commitment to the power of inclusion across the mental health sector. Its findings provide evidence of the need for widespread attitudinal and culture change in mental health systems so that service providers can progress beyond current power relations; outdated understandings of families; and honour and recognise service users’ and families’ skills, capacities, resources and expertise.
Footnotes
Acknowledgements
The authors acknowledge the support and feedback from their lived experience and professional colleagues.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the In Community project, Western Australia, and was jointly funded by Mental Health Matters 2 and Richmond Wellbeing.