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RESEARCH ARTICLE

Family identity and severe mental illness: A thematic synthesis of qualitative studies Ángela R. Acero*,†,‡, Adrián Cano-Prous‡, Gabriel Castellanos§, Raquel Martín-Lanas* &

Ana Canga-Armayor*

* University of Navarra, Navarra, Spain

† Universidad de La Sabana y Clínica Universidad de La Sabana, Chía, Colombia

‡ Clínica Universidad de Navarra, Navarra, Spain

§ Fundación Universitaria de Ciencias de la Salud, Bogotá, Colombia

Correspondence

Ana Canga-Armayor, Department of Adult

Nursing, School of Nursing, University of

Navarra, C/ Irunlarrea 1, 31008, Ed. Los

Castaños, Pamplona, Navarra, Spain.

E-mail: [email protected]

Received: 4 May 2015

Accepted: 5 August 2016

http://dx.doi.org/10.1002/ejsp.2240

Keywords: family identity, systematic

reviews, qualitative analysis, severe mental

illness, social identity approach

Abstract

There is a growing amount of research showing that a shared social identity and the sense of belonging to a family have a potential effect on health. However, little is known about the effects of severe mental illness on family identity. The authors carried out this thematic synthesis based on a systematic review of literature on family narratives of severe mental illness and family identity. The main findings indicate that in many families (i) their identity —as a shared social identity—undergoes a transformation process by which the identity aspects of being a family are reinforced; (ii) family members often take on a caring role as their main family role; and finally, (iii) a cultural com- ponent shapes this transformation process. The authors describe implications for research and application in the mental health field. All in all, family identity is transformed by the experience of severe mental illness.

One in four adults in the world suffers from mental illness (MI) (defined as a significant disturbance in behaviour, emotional control, or cognition because of dysfunction in mental processes), a condition that is asso- ciated with significant distress (American Psychological Association, 2013; World Health Organization, 2001). Among them, people with a severe MI (SMI) represent 1% to 4% of the population and are affected most permanently and seriously (Lavikainen, Lahtinen, & Lehtinen, 2000; Substance Abuse and Mental Health Services Administration, 2013). The term SMI is used to describe a group of people with MI who require still more health care because of the characteristics of their condition—more severe and persistent symptoms, their resources and/or psychosocial situation, and the fact that their functional state is more severely impinged upon (Charlwood, Mason, Goldacre, Cleary, & Wilkinson, 1999; Parabiaghi, Bonetto, Rugger, Lasalvia, & Leere, 2006). The diagnostic categories that pertain to SMI usually include psychoses, major affective disorders, somatoform disorders, disorders related to stress, behav- iour disorders, and personality disorders (Charlwood et al., 1999), although not everyone with these diagnoses has an SMI. Although a wide variety exists in the course of MI, people suffering from SMI—in contrast to those without SMI—present increased rates of both morbidity and mortality, are more frequently unemployed and sin- gle, and are disabled to a higher degree (De Hert et al., 2011). These factors mean they require constant support

and care, which, in many cases, is provided by their families, who also live through the illness (Calderon, 2011; Lefley, 1996; Pearson, 1993; Seeman, 1988). The connection between family and SMI has been

studied for several decades. Families were first seen as the origin of MI and, later, as the first recipient of its ef- fects (Cook, Pickett, & Bertram, 1997). Currently, SMI is recognised as a condition that generates chronic stress on the entire family, and, therefore, many studies have assessed the effects of its burden and stigma on the fam- ily and on family members, as well as ways families cope and their resilience, social support and functioning, and so forth (Saunders, 2003). During the last decades, re- search and health interventions have focused on family strengths and on recovery, the latter being understood more as a process than as a result or goal (Gehart, 2012a). At the same time, the recovery movement in the mental health field has shifted attention from a sin- gle person’s intrapsychic symptoms onto psychosocial functioning, including relational, social, cultural, and other aspects (Gehart, 2012a). The purpose of this focus is to make it plausible for a mentally ill person to start a process of recovery or ‘a journey of healing and trans- formation enabling […] her/him to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential’ (U.S. Department of Health and Human Services, 2004, p. 1). In this re- gard, the main aspects of this process include identity and, in addition, connectedness or community-centred

EJSP

http://dx.doi.org/10.1002/ejsp.2240

elements, such as relationships, friends, and family (Leamy, Bird, Le Boutillier, Williams, & Slade, 2011; Onken, Craig, Ridgway, Ralph, & Cook, 2007). Concerning the family, recent studies evidence its

potential effect as a facilitator of both recovery and relapse (Bradshaw, Armour, & Roseborough, 2007; EnglandKennedy & Horton, 2011; Guarnaccia & Parra, 1996; Schon, Denhov, & Topor, 2009). Similar findings have been reported in qualitative studies, where per- sons with an SMI diagnosis perceive that family both facilitates and hinders the recovery process on SMI: The former does so by providing motivation and moral and practical support; the latter through forcing inpa- tient treatment, displaying stigma and lack of under- standing, and acting as a source of stress (Aldersey & Whitley, 2015). Over the last few years, identity has been studied with

attention to diverse areas related to subjective aspects of SMI experience, resulting in the acknowledgement of its importance (Drake & Whitley, 2014; Levine & Ligenza, 2002; Rowe, 2012). These areas of research have also re- vived interest in the perspective of identity in SMI (Bergstresser, 2006; Estroff, 1989; Wisdom, Bruce, Saedi, Weis, & Green, 2008; Yanos, Roe, & Lysaker, 2010). Likewise, during the last decade, research has shifted from analysing social groups and their effect on physical and mental health (Holt-Lunstad & Smith, 2012) to the introduction of a group identity perspec- tive in order to gain a better understanding (Jetten, Haslam, Haslam, Dingle, & Jones, 2014). This innova- tive perspective shows that shared social identities—more than the fact of belonging to a group or not—may have a positive or negative impact on health (Jetten et al., 2014). For this reason, they have been commonly labelled as ‘social cures’ (Jetten, Haslam, & Haslam, 2012), bringing the study of social identity closer to mental health. When a person takes on a new challenge, a part of

their foundation and support is expected to come from a set of aims, values, and beliefs that are steady over time (Schwartz, 2005) and largely from people, relation- ships, and meanings reciprocally and co-biographically constructed within the family (Viladrich, 2005). To this end, King and Wynne (2004) suggest that sharing stories, topics, and rituals within a family results in the integration of family and personal stories, as well as the transmission of a family identity. Despite its rele- vance, research on family identity when dealing with SMI is scarce. This review attempts to increase existing knowledge in this field.

Background

Coping and Identity

The Social Identity Model of Identity Change states that important life events—such as an MI—affect not only personal identities but also social identities. Furthermore, when maintained or acquired, social iden- tities may buffer the consequences of negative changes

by allowing for some continuity (Jetten & Pachana, 2012). This is not applicable in all cases, for instance, in the consumption of psychoactive substances; Dingle, Stark, Cruwys, and Best (2015) show that the process of rehabilitation, as well as the identities of rehabilitation, is more associated with breaking identities and member- ships than with the creation of new ones. In the case of MI, studies show that there is a stigma

towards both the individual and the family that lives with an SMI. They further detail how collective experi- ence and the identification of similar groups have both harmful and beneficial effects on a single person. Iden- tifying with a stigmatised group produces a negative effect on one’s self-esteem, but at the same time, it fa- cilitates access to different mechanisms that lead to the rejection of those stigmas and stereotypes and to group support (Crabtree, Haslam, Postmes, & Haslam, 2010). However, for many people, far from being just another group, the family is of utmost importance. Thus, we will look at the concept of family identity from two points of view: family identity as something that makes a family be a family and family identity as a social identity. In addition, we will then flesh out the connections between social identity and health, and we will then present the objectives of this review and thematic synthesis.

Family identity

Cigoli and Scabini (2006) define family identity as a set of characteristics that make family different from other groups of people, including three dimensions: (i) its or- ganisation as a primary group, enabling a bonding be- tween its members in the uniqueness of their being and existence; (ii) its dimension as a symbol of the bonding between them, where justice, loyalty, hope, and trust allow for the relationship between and mu- tual care of its members; and (iii) a dynamic dimension where reciprocal giving, although not sym- metric, is unconditional (Scabini & Manzi, 2011). Family identity can also be defined from the view-

point of group identity based on social identity theory (Tajfel & Turner, 1986) and self-categorisation theory (Turner, Hogg, Oakes, Reicher, & Wetherell, 1987). So- cial identity theory defines social identity as a part of a person’s self-conception, comprising both a cognitive component and an emotional component. The former component derives from the feeling of being a member of a group, whereas the latter is rooted in the value and emotional meaning associated with that membership (Spears, 2011). This is the result of a process of social categorisation, as well as identification with the groups we belong to and of a process of comparison with other groups, allowing for the assessment of one’s own group (s) and assigning significance and value to it. The theory of self-categorisation understands identity as a concept with different levels of abstraction (personal, group, and human) related to the comparative groups and con- texts in which it is analysed (Ashforth & Mael, 1989; Turner et al., 1987). From this perspective, personal

Á. R. Acero et al.Family identity and severe mental illness

and group identities represent different levels of self- categorisation, and the definition of self is always rela- tional and comparative. From this theory, other con- cepts have emerged such as identity salience, social influence, group formation, and collective behaviour (Spears, 2011). With this background taken into consideration,

family identity is understood as the particular under- standing each family has of itself as a group, and its members’ sense of identification with that group (Ashforth & Mael, 1989; Ellemers, Spears, & Doosje, 2002; Scabini & Manzi, 2011; Spears, 2011; Tajfel & Turner, 1986; Turner et al., 1987). This identity is in permanent construction through family members’ in- teractions around the intimate matters that constitute their life together, including their experiences, shared roles, emotions, and so forth. These matters permit common beliefs, and meanings about the sense of belonging emerge, as well as a sense of ‘we-ness’, which is built up through social interaction and through a relationship with the wider social context (Ashforth & Mael, 1989; Ellemers et al., 2002; Lawler, 2003; Spears, 2011).

Family identity as a social cure

Social identities—such as family identity—allow us to focus on what we share with others (e.g., a shared iden- tity as a mother or as a sales person at a particular com- pany). Beyond that fact, being included by others or by oneself in a social identity bolsters the perception that such inclusion—whether it is external or personal—is important and significant for self-definition. In this way, the personal perception of that inclusion as impor- tant allows it to become a role, a relationship, or an internalised membership to ‘understand the self and one’s place in the world’ (Jetten et al., 2014, p. 113). This means that an identity may be understood as a shared identity or as a self-categorisation within a group with which the same identity is shared. The fact of shar- ing an identity makes a difference between being in a group and belonging to a group (e.g., one can attend a political meeting with other people without necessarily supporting or belonging to that political group). When an identity is shared, it sets guidelines that inform be- haviour even in the absence of a leader (Reicher, 1987). Additionally, belonging to a group—the subjec- tive feeling of belonging or self-categorisation—and sharing the feeling of belonging with others allow for the group’s social influence to reach a particular person (Haslam, 2014; Turner, 1991). This potential can also have a positive influence on health during times of stress (by feeling supported, esteemed, and capable; Greenaway et al., 2015) or can negatively affect physical and mental health when social identification with a rel- evant group is lost or altered (Cruwys, Haslam, Dingle, Haslam, & Jetten, 2014). Concerning family, which most people would con-

sider as the most significant group to which they belong, research has shown that in the presence of a strong

identification with the family, the establishment of pos- itive relationships with relatives becomes easier and, as a result, health improves. In contrast, a feeling of dis- tance and a lack of commitment to one’s family lead to poor relationships among its members and are associ- ated with adverse effects on health (Sani, 2012). In a very different vein, research on national identity has demonstrated how collective participation in several contexts—associated with daily life, as well as events and experiences such as an illness—is seen as an oppor- tunity to strengthen the group through a common fate. In addition, during these moments, questions about ‘who we are’ as a group both come up and can be an- swered (O’Donnell et al., 2016; Páez & Rimé, 2014). In other words, they highlight how shared social identity can be formed, transformed, and maintained in the ex- perience of collective contexts. As Reiss and Oliveri (1980) point out, this means that the challenging cir- cumstances that families face—for example, illnesses— become opportunities to reconsider who they are as a group, what their values and beliefs are, and what they are capable of. As a result, those circumstances afford families the opportunity to construct their place in the world (Reiss & Oliveri, 1980). Family identity, conceived from this point of view,

has an important influence on the way people with MI, and their families, experience, give sense to, and cope with the process of illness and recovery. In addi- tion, such influence spreads to other family members’ health throughout the process of illness. However, de- spite the key role families play on the experience of SMI, little is known about family identity therein. We only found one study that addresses identity and family (Buckley-Walker, 2013), although it focuses on the rel- atives of a person with substance use and/or a mental disorder and the identity changes that they experience as members of a family throughout the recovery pro- cess; that is to say, it is more focused on the personal identity of family members than on family identity. Therefore, this article aims to carry out a systematic

review of the literature of family narratives related to SMI and family identity and to perform a thematic syn- thesis applying the perspective of family identity. In this way, we wish to contribute to the understanding of how family identity changes throughout the experience of SMI and how family identity and SMI are related to one another.

Methodology

We followed three guidelines for research and reporting: Enhancing Transparency in Reporting the Synthesis of Qualitative Research (ENTREQ), for the main structure of the review (Tong, Flemming, McInnes, Oliver, & Craig, 2012); Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA), for the systematic searching (Moher, Liberati, Tetzlaff, & Altman, 2009); and Consolidated Criteria for Reporting Qualitative Research (COREQ), to assess the quality of the papers included (Tong,

Á. R. Acero et al. Family identity and severe mental illness

Sainsbury, & Craig, 2007). Finally, we performed a the- matic synthesis according to the model suggested by Thomas and Harden (2008), with special attention to the following questions: who are they as a family, who are they after illness, what is it that makes them a family, how does identity change, and how is identity related to illness?

Search and Selection of Articles

We designed a protocol in which we previously de- fined the review objectives, the screening method, the inclusion and exclusion criteria, and the way in which papers would be assessed. Given that our topic falls within health and human sciences, we chose to use the following databases: PubMed, Ebsco (PsychInfo, PsychArticles, and Psychology and Be- havioural Sciences Collection), Web of Science (all databases), LILACS, and Teseo. We carried out the electronic search on 15 May 2014

using the acronym PICO (Participants, Intervention or exposition, Comparison, Outcomes; Moher et al., 2009), with some adaptations to guide our search. The strategy and terms used for the search are detailed in the supporting information (Tables S1 and S2). We included doctoral theses, excluded books, and critiques and did not set date limits. Finally, we removed duplicated papers within the original database interfaces using the software Reference Manager v.11 for Windows. First, we did a double reading at two different times of

the titles and abstracts of all the documents found, and we included those with the following criteria: (i) derived from primary studies; (ii) carried out with families; (iii) clear exploration of family narratives about SMI; (iv) in- clusion of aspects related to family identity; and (v) writ- ten in English or Spanish. We excluded papers focused on psychoactive substance-related disorders, dementia, and pervasive developmental disorders. These disorders were excluded because they are usually not included in the diagnostic criteria. That is to say, we included studies dealing with psychotic disorders (schizophrenia, schizoaffective disorder, delusional disorder, etc.), affec- tive disorders (major depressive disorder and bipolar affective disorder), behaviour disorders, obsessive– compulsive disorder, and eating disorders (bulimia, anorexia nervosa, etc.). Finally, we performed a manual search based on the reference lists of papers selected as eligible in the initial search (snowballing). After applying the selection criteria, we obtained 15

documents from the databases and 17 from the hand searching (snowballing). Out of these papers, three were rejected because the full text was not written in English or Spanish, as well as three dissertations because we could not find the articles related to the researches. We reviewed a total of 26 full-text documents, 13 of which were included for the synthesis. The whole process is displayed on the flowchart presented in Figure 1. The characteristics of the studies included are

gathered in Table 1. The characteristics of the studies

excluded and the quality assessment of the papers included are gathered in the supporting information (Table S3). Even though the initial objective was to include a variety of MIs, the majority of the articles included refer primarily to the psychotic spectrum disor- ders, which is reflected in the final sample.

Data Extraction and Qualitative Analysis

We summarised the most relevant contextual aspects of the papers and extracted the Results/Findings section for each of them. We then conducted a thematic analy- sis with the aid of the software QDA Miner for Lite ©. Codification was undertaken following Thomas and

Harden’s (2008) recommendations: free codification, organisation of codes into descriptive themes, and the development of analytic themes.

Free line-by-line coding. As we did not find stud- ies directly concerning our review questions, we put these questions to one side until a more advanced stage of the analysis was reached. Thus, we began to carry out a thematic analysis starting from previous findings in the studies we had reviewed. In this way, we extracted and then entered into the software the text of each pa- per labelled as ‘findings’ or ‘results’. Then, we coded these papers’ findings line by line. New codes were se- quentially added when necessary. We finally obtained 36 codes.

Developing descriptive themes. In the second stage, we undertook an iterative process in which we reviewed similarities and differences between the codes and created new codes with a higher level of abstrac- tion. As a result of this process, we grouped all codes into five descriptive themes and organised a hierarchical tree structure with several layers.

Generating analytical themes. Up to that point, we had produced a synthesis of the information about the family experience with SMI organised by thematic groups. However, we had still not further explored our review topic and family identity, neither had we gener- ated other notions or understandings that had ‘gone be- yond’ the findings of the primary studies. Then, we introduced the review questions that we had previously set aside. Bearing in mind family narratives of MI, the changes they had undergone as persons and as families, and established concepts about identity, we performed a second review of the descriptive themes that emerged previously, the notes, and the papers’ contexts (aims, research setting, participants, diagnosis, and time since onset of illness). Taking everything into account, we in- ferred the effect of the experience of SMI on family identity. We performed a cyclical process of analysis in two ways: ‘vertically’, searching for higher levels of ab- straction of conceptual abstraction, and ‘transversally’, searching for relationships between categories. This pro- cess was carried out until new themes were sufficiently abstract to describe and/or to explain our initial

Á. R. Acero et al.Family identity and severe mental illness

descriptive themes, as well as inferred effects of the ex- perience of SMI on family identity. For this last stage of analysis, an important aspect was the comparative process of the studies and of the participants’ context, looking for differences and similarities. The hierarchical tree structure of the descriptive

themes, the definition of codes, and an example of this third stage of analysis are presented in the supporting information (text, Figure S1, and Table S4).

Trustworthiness. In addition to the use of quality assessment guidelines, throughout the entire process, we took notes and considered the context of each study. The first author did the review and initial codification, which was discussed and defined in group meetings. We independently codified 10% of the papers and then resolved differences together. The first author also per- formed the final analytical process with input and re- view from all the authors.

Fig. 1: Preferred Reporting Items for Systematic Reviews and Meta-analyses flowchart depicting the article selection

Á. R. Acero et al. Family identity and severe mental illness

T a b le

1 . Su

m m ar y o f in cl u d ed

st u d ie s

A u th o r, ye ar

C o u n tr y

A im

D es ig n

Q u al it y

sc o re

a D ia g n o si s

D u ra tio

o f ill n es s

D at a co lle ct io n

Sa m p le /p ar ti ci p an

Id en

ti ty

fo cu s

B ar ke r, La ve n d er , &

M o ra n t, 2 0 0 1

U K

To ex p lo re

th e n ar ra ti ve s u se d b y b o th

cl ie n ts an

d fa m ily

m em

b er s to

ex p la in

th e p ro ce ss

o f d ev el o p in g sc h iz o p h re n ia

N ar ra ti ve

an al ys is an

g ro u n d ed

th eo

1 7

PD IN A

Se m is tr u ct u re d in te rv ie w s

8 p at ie n ts an

d 8 fa m ily

m em

b er s

N o

B ed

o ya

& B u ile s, 2 0 1 3

C o lo m b ia

To ex p lo re

th e ex p er ie n ce

o f b o th

fa m ily

m em

b er s an

d cl ie n ts w it h B D

Ph en

o m en

o lo g ic al an

h er m en

eu ti c ap

p ro ac h

1 6

B D

IN A

In -d ep

th in te rv ie w s

1 2 fa m ili es , p ar en

ts /s ib lin g s

N o

G er ac e,

C am

ill er i, &

A yr es , 1 9 9 3

U SA

To ex p lo re

h o w

ad u lt si b lin g s d efi

n e an

ex p er ie n ce

th ei r si b lin g ’s M Ia n d h o w

th ey

p ar ti ci p at e in

th e si b lin g ’s ill n es s

Th em

at ic an

al ys is fo llo w in g

p ro ce d u re s o u tl in ed

b y M ile s

an d H u b er m an

2 0

PD IN A

Se m is tr u ct u re d in te rv ie w s

1 4 si b lin g s

N o

H u an

g , H u n g , Su

n , Li n , &

C h en

, 2 0 0 9

Ta iw an

To ex p lo re

th e ex p er ie n ce s o f ca re rs w h o

liv e w it h so m eo

n e w it h lo n g -t er m

sc h iz o p h re n ia in

Ta iw an

Ph en

o m en

o lo g ic al ap

p ro ac h

2 1

PD 3 – 2 6 ye ar s

Se m is tr u ct u re d in te rv ie w s

1 0 fa m ily

m em

b er s

N o

Lu ke n s, Th

o rn in g , &

Lo h re r, 2 0 0 4

U SA

To ex p lo re

th e su b tl et ie s o f th e im

p ac t o f

m en

ta li lln es s o n th e ev er yd ay

liv es

o f th e

p ar ti ci p an

G ro u n d ed

th eo

ry 2 1

PD M D B D

IN A

Fo cu s g ro u p s

1 9 si b lin g s

N o

M ar sh

et al ., 1 9 9 6

U SA

To in cr ea se

u n d er st an

d in g o f th e

p o te n ti al fo r re si lie n ce

am o n g fa m ili es

o f

p eo

p le w it h M I

Th em

at ic co d ifi ca ti o n

N A b

PD , B D , M D ,

o th er

IN A

N at io n al Su

rv ey

w it h o p en

en d ed

q u es ti o n s ab

o u t

fa m ily

st re n g th s

1 3 1 fa m ily

m em

b er s

N o

N ew

m an

, Si m o n d s, &

B ill in g s, 2 0 1 1

U K

To ex p lo re

th e im

p ac t o f Fe P o n yo u n g

ad u lt si b lin g s’ se n se

o f se lf an

d th e ro le s

th ey

ad o p t

N ar ra ti ve

an al ys is

1 7

Fe P

1 – 3 ye ar s

Se m is tr u ct u re d in te rv ie w s

4 si b lin g s

Y es

Pe n n y, N ew

to n , &

La rk in , 2 0 0 9

U K

To ex p lo re

Pa ki st an

if am

ili es ’ ex p er ie n ce

o f su p p o rt fr o m

an EI S

Ex p lo ra to ry st u d y, IP A

1 5

Fe P

1 9 m o n th s–

4 ye ar s

In -d ep

th in te rv ie w s

6 fa m ili es , 1 1 fa m ily

m em

b er s

N o

Sa u n d er s & B yr n e,

2 0 0 2

U SA

To ex p lo re

th e is su es

im p o rt an

t to

fa m ili es

o f in d iv id u al s w it h sc h iz o p h re n ia

Th em

at ic an

al ys is

N A b

PD IN A

Q u al it at iv e w ri tt en

co m m en

p ro vi d ed

b y fa m ili es

w h o

p ar ti ci p at ed

in a p re vi o u s st u d y

2 6 fa m ily

m em

b er s

N o

Si n , M o o n e,

H ar ri s, 2 0 0 8

U K

To ex p lo re

th e ex p er ie n ce s an

d n ee d s o f

si b lin g s o f a p er so n w it h a Fe P w it h in

an EI S

Ph en

o m en

o lo g y ap

p ro ac h

1 5

Fe P

1 – 3 ye ar s

Se m is tr u ct u re d in te rv ie w s

1 0 si b lin g s

N o

St ål b er g , Ek er w al d , &

H u lt m an

, 2 0 0 4

Sw ed

en To

ex p lo re

h o w

sc h iz o p h re n ia p at ie n ts ’

si b lin g s p er ce iv e th e ill si b lin g re la ti o n sh ip

an d th ei r ro le

V ar ia n t o f g ro u n d ed

th eo

ry 1 6

PD 1 5 – 3 1 ye ar s

Se m is tr u ct u re d in te rv ie w s

1 4 fa m ili es , 1 6 si b lin g s

N o

St ei n & W em

m er u s, 2 0 0 1

U SA

To p ro vi d e an

in -d ep

th ex am

in at io n o f th e

p er so n al ac co u n ts o f ad

u lt s w it h

sc h iz o p h re n ia , th ei r p ar en

ts , an

w el ls ib lin g s

A n al ys is fo llo w in g p ro ce d u re s

o u tl in ed

b y M ile s/ H u b er m an

an d Ta yl o r/ B o d g an

1 4

PD 1 – 1 1 ye ar s

In d iv id u al In -d ep

th in te rv ie w s

6 fa m ili es : 6 p at ie n ts , 1 2 p ar en

ts , 4

si b lin g s

N o

W is d o m

et al ., 2 0 0 8

N A

To id en

ti fy an

d ex am

in e id en

ti ty -r el at ed

th em

es in

p u b lis h ed

se lf -n ar ra tiv es

o f

fa m ily

m em

b er s an

d in d iv id u al s w it h SM

Th em

at ic an

al ys is

N A b

PD , B D , M D ,

o th er

IN A

Fi rs t- p er so n ac co u n ts an

p er so n al ac co u n ts fr o m

tw o

jo u rn al s o f p sy ch ia tr y

4 5 fa m ily

m em

b er s an

d p at ie n ts

Y es

N o te : B D = b ip o la r d is o rd er ; C O R EQ

= C o n so lid at ed

C ri te ri a fo r R ep

o rt in g Q u al it at iv e R es ea rc h ; EB

T = ea ti n g b eh

av io u r d is o rd er s (a n o re xi a n er vo sa

an d b u lim

ia ); EI S = ea rl y in te rv en

ti o n se rv ic es ; Fe P = fi rs t ep

is o d e o f p sy ch o si s; IN A = in -

fo rm

at io n n o t av ai la b le ; IP A = in te rp re ta ti ve

p h en

o m en

o lo g ic al an

al ys is ; M D = m aj o r d ep

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Á. R. Acero et al.Family identity and severe mental illness

Results

The 13 papers included were published between 1993 and 2013. Out of them, four were carried out in the United Kingdom—although one of them analysed a sample with a Pakistani background, five in the United States, and three were from different countries (Taiwan, Colombia, and Sweden). A wide range of methodologies was used (thematic analysis, phenome- nology, interpretative phenomenological analysis, grounded theory, narrative analysis, Miles and Huberman’s model, and mixed). Twelve papers dealt with psychotic disorders—three of them were focused on a first episode of psychosis, four included bipolar dis- orders, three papers included major depression, and two included other diagnoses. Participants included siblings (five studies), patients and family members (three studies), parents and siblings (one study), and different family members, including parents, children, siblings, and grandparents (four studies). The six main themes generated from the papers

analysed are described below.

Breakup of the Normality of Family Life

Changes in general. The irruption of SMI marks a moment of change. This change occurs in a quick and unexpected way for almost everyone (Penny et al., 2009). Initial warning signs reach a point at which it is impossible not to worry about it (Stein & Wemmerus, 2001). In spite of attempts to understand some of these behaviours as ‘normal’ responses or actions (Barker et al., 2001), they finally become an alarm bell that re- quires attention and are associated with deep suffering (Barker et al., 2001; Gerace, Camilleri, & Ayres, 1993; Newman et al., 2011; Penny et al., 2009). From that moment on, normality in both family and

personal life begins to crumble (Barker et al., 2001; Stein & Wemmerus, 2001). The family gets involved in a continuous struggle to endure the symptoms, to learn how to manage them, and to be able to carry on with life (Barker et al., 2001). Priorities are redefined, and other things are postponed in order to take care of the ill relative (Newman et al., 2011). Taking continuous care of someone leaves little time for other activities (Huang, Hung et al., 2009; Marsh et al., 1996). Many things change for the family, starting with the

most quotidian aspects of life (routines, habits, etc.) and including other more transcendent aspects (rela- tionships, expectations, etc.; Gerace et al., 1993; Huang et al., 2009; Lukens et al., 2004; Marsh et al., 1996; Penny et al., 2009; Stein & Wemmerus, 2001; Wisdom et al., 2008).

Changes in family relationships. The presence of illness affects family relationships (Penny et al., 2009; Saunders & Byrne, 2002). At the onset of illness, most families experience an approach to the ill relative and try to protect him or her (Barker et al., 2001).

The relationships between healthy siblings and the ill sibling can vary. Sometimes, difficulties emerge at the beginning of the illness, but the relationship becomes closer and stronger later on (Huang et al., 2009; Sin et al., 2008). Siblings may go through pro- cesses in which they need to feel closer, although at other times they may need to separate themselves more or even to reassume the care, especially when parents are not able to care for the ill brother or sister (Sin et al., 2008). Concerning the parent–child relationships, depend-

ing on the moment in the family life cycle and on the age of all the persons involved, protection may prevail, previous patterns may be reinforced, or relationships may become more balanced (Stålberg et al., 2004). For example, initially, parents are usually more centred on the ill child. Most of them protect their healthy children while they grow up, expecting them to become inde- pendent and, at a given time, to help more with the mentally ill child (Newman et al., 2011; Stein & Wemmerus, 2001). In some families, after the onset of illness, previous and unclear roles are reinforced be- tween parents and children, giving place to confusion and to higher emotional charge (Gerace et al., 1993; Lukens et al., 2004). In other families, better communi- cation and a healthier family relationship exist, making it easier for its members to talk openly about the illness and to contribute on an equal basis (Gerace et al., 1993). However, in other instances, disagreements prevail about how to behave or how to treat the ill rel- ative. This provokes distancing between the nuclear and extended family (Newman et al., 2011; Saunders & Byrne, 2002). As far as relationships outside the family are con-

cerned, families recognise the importance of friends and social networks during the experience of MI (Barker et al., 2001; Lukens et al., 2004; Saunders & Byrne, 2002). However, many families experience a separation from society as a consequence of stigma, the shame they experience, the effects of the situation and of the symptoms, a poor understanding of the ill- ness, and so forth. Relationships with friends and social relationships in general deteriorate.

Family Experience of Mental Illness Changes Over Time

In the short term: grief. At the beginning of the ill- ness, most families describe a process of grieving with a feeling of confusion, loss, and bewilderment. There are moments of optimism and hope mixed with others of suffering. In general, family members continuously worry about the ill relative and the situation (Penny et al., 2009). In the beginning, families respond in different ways.

Some of them deny the evidence for years or justify their relative’s behaviours (Gerace et al., 1993); others are immobilised after diagnosis (Gerace et al., 1993; Lukens et al., 2004; Newman et al., 2011).

Á. R. Acero et al. Family identity and severe mental illness

There are numerous emotions that overwhelm many families (Gerace et al., 1993; Sin et al., 2008)—fear be- cause they do not know what is happening, what will come, or when an episode might repeat itself and fear because of the risk inherent to the illness’s symptoms. In addition, family members commonly react with de- spondency about the meaning of the illness, with self- blame for what they did or did not do (Barker et al., 2001) or by blaming the ill person for being ill and not being able to fulfil their expectations (Penny et al., 2009). Anger, rage, frustration, and sadness are other common emotions (Gerace et al., 1993; Saunders & Byrne, 2002). One way in which families may respond is keeping

the ‘secret’, not talking to anyone about the illness, not even to their own family (Gerace et al., 1993; Sin et al., 2008; Stålberg et al., 2004). They avoid speaking about feelings, about what to do, about what is happen- ing, and about the future; the illness remains unnamed (Lukens et al., 2004).

In the long term: acceptance and sense making of illness. Families try to make sense of illness within their own lives, allowing them to carry on (Newman et al., 2011). Regardless of the family, a constant chal- lenge remains (Barker et al., 2001; Marsh et al., 1996). The shifting nature of symptoms involves continuous adjustments that require a lot of time every day, as well as mental and emotional energy (Barker et al., 2001; Lukens et al., 2004). Trying to understand and to assim- ilate the illness is difficult (Lukens et al., 2004), generat- ing frustration because of other people’s lack of understanding (Newman et al., 2011). Throughout this process, many families are willing to

explore a variety of options on the path to recovery (Penny et al., 2009). They develop and use skills in order to better cope, such as recognising deficits and adjusting their expectations, learning to recognise small advances, and being able to identify strengths (Stein & Wemmerus, 2001). Others find it useful to employ pos- itive thinking, spirituality (Huang et al., 2009), and an- ticipation (Newman et al., 2011); to question the social constructs of normality (Stein & Wemmerus, 2001); and to learn about the illness (Huang et al., 2009; Stålberg et al., 2004). Many families also find it useful to be able to talk

about what is happening in their families, including with the ill relative (Gerace et al., 1993; Marsh et al., 1996) and with others (Saunders & Byrne, 2002; Stålberg et al., 2004). Some employ family rituals to maintain a sense of normality and to encourage the in- clusion of their ill relative (Stein & Wemmerus, 2001). Over time, some families resign themselves to the un-

certainty of the future (Wisdom et al., 2008), whereas others change their expectations to meet reality, expecting to see only small changes in their relative or, at least, that their relative will maintain gains achieved (Penny et al., 2009). They enter a progressive process of accepting the situation (Gerace et al., 1993; Marsh et al., 1996).

For many families, the experience of illness fuels change and becomes a process in which people and families take a fresh look at their lives, giving it a new sense of meaning (Lukens et al., 2004; Marsh et al., 1996; Newman et al., 2011). Although some family members distance themselves emotionally and physi- cally over time (Gerace et al., 1993), for others, their motto is to persist in the care of their relative, to always try something else, and to try to maintain hope (Marsh et al., 1996).

Strengthening and Transformation of Family Identity

The sense of permanence, the meaning given to belong- ing to their family, and the specific characteristics of their family are highly relevant to many families after experiencing SMI. They describe how, in dealing with MI, they feel more united and give each other more support, becoming in the process stronger families that are better able to face adversity together (Marsh et al., 1996; Sin et al., 2008). However, it is also clear that when some families face SMI, they begin to disintegrate (Marsh et al., 1996).

Being a family. The experience of MI increases the amount of pride and respect that many family members feel towards one another in forming part of their family unit (Marsh et al., 1996). Many families state they have a growing feeling of being one as a group, as a family, in the process of supporting and achieving their relative’s current needs (Marsh et al., 1996; Stein & Wemmerus, 2001). There is also a consolidation of strengths, values, and beliefs as a family and of their sense of commitment to each other (Marsh et al., 1996). Many families describe developing a stronger bond

throughout the whole family and within the specific dyads (parent/children, couple, and siblings), which al- lows for more togetherness (Lukens et al., 2004; Sin et al., 2008) and for the family to exercise the function of sustenance and comfort (Marsh et al., 1996). The component of trust and hope of the bond (Scabini & Manzi, 2011) among family members is reinforced. Family members claim that they are confident they can rely on mutual support because they feel sure that they are not alone, whatever the circumstances may be (Marsh et al., 1996). Permanence and indissolubility of the bond (Scabini

& Manzi, 2011) are undeniable in many accounts; in- deed, some family members are constantly present, re- gardless of how much time they may have to care for their ill relative. These family members believe they have a responsibility and permanent obligation just for the fact that they are family (Stein & Wemmerus, 2001). In the same way, the dynamic component of being a

family, of giving and receiving (Scabini & Manzi, 2011), is present in family members’ expressions of care and concern, and in their constant search for their rela- tive and family’s well-being. This component of what a family is, giving, is even more present in those families,

Á. R. Acero et al.Family identity and severe mental illness

specifically in their characteristic of not being symmetri- cal, that is to say, there is a difference in the amount given out and the amount received back. Although finding value in their ill relatives is difficult

for some families (Huang et al., 2009), for others, it is noticeable how they accept them after their illness and value and love them for being who they are (Marsh et al., 1996), beyond their illness and what they can or cannot do.

Process of transformation of identity. Within the family, there is a meeting of multiple identities that are co constructed and transformed in different ways. MI involves changes in the way people see themselves as parents, siblings, or children and in how they take on and accept changes in the reorganisation of their lives around the needs of a mentally ill relative. Siblings are often faced with an important moment of

change in that they are forced to grow up faster; they commonly assume the role that is required within the family, making it necessary for them to assume more re- sponsibility, to grow up, and to mature. At the same time, this also reinforces their previous role as a brother or sister within which they offer help, companionship, and support (Newman et al., 2011). Brothers and sisters go through the loss of the previous relationships and the construction of a new one (Stålberg et al., 2004); they see themselves as an important part of the recovery of their brother or sister (Newman et al., 2011). However, in many cases, family reorganisation leads to the whole family focusing on just one person, which results in some family members, especially healthy siblings, be- coming ‘invisible’ (Lukens et al., 2004; Sin et al., 2008). Some parents internalise a change in their view of the

care they give to their child and in the needs their child may have. They assume that they will always be parents and involve their healthy children in the care of their ill sibling. Many parents, in addition to redirecting their expectations regarding their children, question them- selves and are questioned by others about their role as parents, about their possible contribution to illness (Stein & Wemmerus, 2001), and about how they react to the behaviour of their child with SMI (Huang et al., 2009).

Salient Identity: Expert Families in Mental Illness and Care

Caregivers as the main salience in family identity. With SMI, the salient and social aspects of family identity experience the highest degree of change. One of the principal identities that the family assumes is that of family carer in both practical and emotional areas (Stålberg et al., 2004). Family members are more willing to assume the role of caregiver when there is a previ- ously established relationship defined by closeness and affection (Bedoya & Builes, 2013; Lukens et al., 2004; Stålberg et al., 2004). Despite the effort required and the strain it entails, looking after and devoting oneself

to a relative is a necessity in many families (Marsh et al., 1996; Penny et al., 2009). When the ill relative is a child, mothers usually as-

sume the role of the main carer. A great deal of them put the rest of their life to one side in some way (Sin et al., 2008). The new role demands a lot of time from any family member’s typical activities (Huang et al., 2009; Newman et al., 2011). The carer abandons or puts off essential family aspects such as work, school, or their spouse to make room for the ill relative’s needs (Huang et al., 2009). Families, parents, and especially mothers consider the

role of caregiver as a responsibility, an obligation that becomes more evident when illness surfaces (Bedoya & Builes, 2013; Penny et al., 2009). Besides, care is not based on the family bond alone but also involves a great deal of love (Bedoya & Builes, 2013; Stålberg et al., 2004). When mentally ill people receive care from their fam-

ilies, they report a feeling of protection and support; they also get first-hand experience with the fact that their needs are not the only ones in play and that all family members’ needs should be recognised (Bedoya & Builes, 2013; Sin et al., 2008). The main carer develops skills to identify the early

signs of crisis (Bedoya & Builes, 2013) and, in general, of the illness (Gerace et al., 1993). Caring families be- come experts in MI in some ways.

Other salient family identities: a different family. A variety of families mention that they must get used to the fact that others consider them as a ‘differ- ent’ family (Stålberg et al., 2004) or to seeing them- selves as a family that other people would not want to belong to because of the fact that one of their members is mentally ill (Lukens et al., 2004). Many are subtly rejected (Saunders & Byrne, 2002), which adds to the demands of taking care of their relative and often results in families becoming solitary, isolated, and deprived of their social relationships and leisure time (Huang et al., 2009). Families describe an intensification of relation- ships, but not a broadening of them. That is to say, rela- tionships between family members and some members of their extended family or friends become more signif- icant, although, in general, the total number of relation- ships is reduced. Some relatives also develop roles that, although re-

lated to caregiving, do not necessarily require daily in- volvement. In general, these roles are focused on giving support to the family in their attempt to cope with the situation. For instance, some siblings mediate with health professionals, making healthcare informa- tion more understandable for their parents (Gerace et al., 1993; Newman et al., 2011). Others take charge of formalities with medication or look for information about the illness (Newman et al., 2011). In many cases, this involves abilities that the family member has previ- ously developed, thus putting their skills at the service of the family (Lukens et al., 2004; Newman et al., 2011).

Á. R. Acero et al. Family identity and severe mental illness

This new role can be difficult for siblings. They may sometimes assume the role of a parent; on other occa- sions, they may have to mediate or balance emotions, while, at times, their role is to avoid adding more prob- lems or suffering to the family (Lukens et al., 2004). Family members, including the mentally ill relative,

sometimes develop another role in serving as a refer- ence and a source of support to other families with MI, spreading their experience and knowledge to other peo- ple (Marsh et al., 1996).

Who Are You? Who Are We?

The family’s identity is redefined in reference to the identity of a mentally ill relative. The family embraces a ‘new’ member and reshapes existing bonds, roles, and expectations. The ill relative adopts a new way of seeing himself or herself and of being seen by his or her relatives. The family is forced to recognise that the person who was once one of its members is no longer there (Gerace et al., 1993). He or she has changed and will no longer be the one he or she was before (Gerace et al., 1993; Penny et al., 2009). For ill relatives, the onset of illness can be accompa-

nied by the perception that their self has been taken away. In a certain way, they lose their identity and be- come an unknown individual (Wisdom et al., 2008). Some of them recognise themselves as vulnerable and ill (Bedoya & Builes, 2013) persons, where the symp- toms of MI force their identity into a dichotomy be- tween who they are when they are healthy and when they are ill (Wisdom et al., 2008). For some, this means that the symptoms and illness

become the most salient and permanent aspect of their identity (Wisdom et al., 2008) or of their relative’s iden- tity (Barker et al., 2001). However, on other occasions, some ill people and their relatives reach a point where they are able to see the illness as just another part of who they are (Wisdom et al., 2008). Some may see their illness as a way of differentiating

themselves from their family or of defining themselves. Others, after experiencing MI and the physical proxim- ity that it forces upon people, undergo a process of recovery and regained independence (Barker et al., 2001). Finally, when families have a mentally ill member,

they often consider the topic of future generations and the possibility of developing an identity as a parent, grandparent, or aunt/uncle, sometimes having to accept the possibility of never filling those roles (Sin et al., 2008; Wisdom et al., 2008).

Unique Families, Unique Identities

Although multiple aspects are common to families experiencing MI, the fact that there are differences in their experiences and in the sense each of them gives to illness cannot be ignored. The changes they go through are closely related to the culture they reside in and to each family’s particular context.

In the study carried out by Bedoya and Builes (2013) with Colombian families, in the research conducted by Huang et al. (2009) with families from Taiwan, and in the study by Penny et al. (2009) with Pakistani families, it is clear that families place more value on being an ac- tive part of their relative’s care, usually as the main carers. They experience it as an obligation, something they owe to their relative, and they cannot and do not want to delegate it to other people. On the contrary, for families in more individualistic

cultures, state support and institutional resources, as well as the conception of adulthood in the society to which they belong, make them think about the possibil- ity of their relative’s independence. In other cases, they delegate their relative’s direct care, although they con- tinue to be present in case they are needed (Stein & Wemmerus, 2001). Depending on the culture and its beliefs about illness,

the family may see its ill relative as a person without value. This fact becomes evident in the study of families in Taiwan, where some healthy siblings simply did not accept their brother or sister with MI and considered him or her as a ‘lazy’ because he or she did not work (Huang et al., 2009). He or she did not meet the expec- tations of their community, where work is a source of pride for the family and society. This can lead them to hiding the illness and rejecting their ill relative. Therein, persons with SMI become isolated from society, as well as the rest of the family, because of shame (Huang et al., 2009; Sin et al., 2008). The ways of coping or the ways in which the family

gets involved are related to their explanations and be- liefs about the illness. As is evident in the studies of fam- ilies from Pakistan or Taiwan, in some families, more importance is placed on the social and religious compo- nents inherent in the culture, thus shaping their expla- nations and behaviours concerning MI (Huang et al., 2009; Penny et al., 2009). On the contrary, in Western cultures, the relevance of

biological and medical concepts on this subject leads to whole families with different understandings and ac- tions (Barker et al., 2001; Bedoya & Builes, 2013; Saunders & Byrne, 2002; Stein & Wemmerus, 2001).

Discussion

This synthesis explores the relationship between SMI and family identity. Our findings evidence that (i) fam- ilies living with SMI experience a change in family iden- tity that takes place in the meta context of the changes in family life and in family relationships derived from the experience of illness; (ii) this process entails a dy- namic experience that goes through at least two phases, the first is more intense and chaotic, whereas the later one presents constant challenges derived from the ex- perience of illness and a variable process of acceptance; (iii) for most families, a strengthening and renovation of family bonds arise, as well as a new form of relation- ship among family members; (iv) the care and knowl- edge garnered from the experience of SMI becomes a

Á. R. Acero et al.Family identity and severe mental illness

part of their salient identity; (v) there is a constant search to understand and make sense of who they are and/or who their relative is; and (vi) every family iden- tity is closely related to its sociocultural context and his- tory as a family. We consider that this synthesis adds, for the first time,

a family identity perspective to the experience of SMI. Although other scholars have described the impact of MI and stigma on personal and social identities, as well as on families as a group (Fernandez, Breen, & Simpson, 2014; Forrester-Jones & Barnes, 2008; Goffman, 2009; Larson & Corrigan, 2008; Phelan, Bromet, & Link, 1998; van der Sanden, Bos, Stutterheim, Pryor, & Kok, 2013), up to now, there seems to be no scholarly research focused on family identity in SMI. Therefore, this article is likely the first piece of research on this topic. In what follows, we first discuss various methodolog-

ical aspects, including the limitations of this study, followed by a discussion of changes in family identity, which is structured by the initial questions that guided this synthesis, as well as the relationships between SMI and family identity, and cultural findings. Finally, the implications of the study are addressed.

Methodological Aspects

There are several methods to perform a synthesis of qualitative research (Barnett-Page & Thomas, 2009). We chose the method proposed by Thomas and Harden (2008), given its structure and its greater internal coher- ence with the rest of the guidelines followed in our synthesis (ENTREQ, PRISMA, and COREQ). One of the drawbacks of this method concerns the third step of analysis, in which it is encouraged to go beyond the original information so as to give a new interpretation. However, in this step, we adhered to previous theoreti- cal concepts and to the research questions. As pointed out by the authors of this method (Thomas & Harden, 2008), ‘the analytical themes are the result of interro- gating a descriptive synthesis by placing it within an ex- ternal theoretical framework’ (p. 8). Concerning quality assessment of the papers, one of

the aspects deserving attention is to make explicit the characteristics of the research team and reflexivity, which allow readers to assess how these factors might have affected authors’ interpretations and observations (Elder & Miller, 1995; Malterud, 2001; Mays & Pope, 2000). This is one of the motivations for the implemen- tation of guidelines to report qualitative research (Tong et al., 2007). Studies directly analysing identity in SMI are scarce.

This means that our thematic synthesis was carried out on the basis of studies whose main objective was not directed at analysing identity in depth. Five of these studies were focused on siblings’ experiences, and therefore, this study is possibly more skewed towards this group than to other family members (spouses, grandparents, etc.). There is also a lack of information

about the identity process when families experience SMI in more than one family member. Given that most of the studies reviewed included fam-

ilies that were willing to participate and that, to some degree, continue taking care of their ill relatives, find- ings described in this article are probably only applicable to these sorts of families. This excludes families who have decided to distance themselves or who, for a vari- ety of circumstances, have not been able to directly ac- company the process of their relative. What identity processes unfold in these other families? At the same time, because the majority of the articles

included involve families experiencing psychosis, the findings can only be generalised to families in that situ- ation. It is probable that specific analytic themes also likely vary within the different SMIs. The texts included in this article differ in terms of

methodology, objectives, participants, and places where they were carried out (with different beliefs, health sys- tems, and degrees of state support). These differences, although they provide a wider outlook, entail the diffi- culty that the results are not applicable to a variety of families and cultures, and also, they present methodo- logical challenges when translating concepts from one paper to another. To solve the latter difficulty, the first step included line-by-line codification; in addition, the texts’ context and characteristics were considered throughout the analysis (Thomas & Harden, 2008).

Changes in Family Identity

Process of change. An SMI changes a person’s be- haviour, actions, and feelings and redefines how he or she views his or her capabilities, relationships, and place in the world. In conjunction with this changing view, the family of a person with SMI goes through a process by which relationships, roles, and expectations emerge with a new configuration. This process usually implies a loss of the former self or the family member, as well as of expectations, dreams for the future, previous rela- tionships, and a sense of security and certainty. For this reason, several authors identify this change as a grief process (Richardson, Cobham, Murray, & McDermott, 2011). The process of loss and finding new meaning for one-

self and for the family as such has been found—as in the present synthesis—to change over time (Godress, Ozgul, Owen, & Foley-Evans, 2005). Initially, it is a very intense process and later becomes more focused on get- ting on with life. In line with these findings, other pieces of research describe how families with SMI get through the experiential and coping phases, highlighting their challenging nature (Muhlbauer, 2002); several other studies include the positive redefinition of the sense of identity as a category of recovery (Leamy et al., 2011). Findings in this line were also found in the study by

Buckley-Walker (2013) focused on family members’ personal identities when recovering from the impact of their family member’s MI and/or substance abuse. In that study, families were recruited from a support

Á. R. Acero et al. Family identity and severe mental illness

group, and personal identity aspects were assessed at the beginning of the research and again after 12 months. They found that family members were initially focused on their ill family member and perceived him or her negatively, but 12 months later, they were more fo- cused on themselves and were able to see the situation in a more optimistic light regardless of their ill relative’s recovery stage (Buckley-Walker, 2013).

Family identity. Findings suggest that family iden- tity is modified in a variety of ways. In some families, identity aspects are reinforced, whereas in other families previous fissures become deeper and open the family up to disintegration. In this synthesis, we found limited in- formation with regard to the latter case. However, in some families, when relationships are negatively im- pacted, as can happen in the relationship between par- ents or among siblings, affected family members may begin to identify less with their family (Sani, 2012). To what extent did those families consider themselves as ‘we’? How strong was their shared identity as a family before the onset of SMI? By the same token, Kellezzi and Reicher use the term ‘social curse’ to explain the ef- fects of events, such as an MI, with a stigma attached to them that then result in the denial of an established so- cial identity. In this case, individuals do not share their burdens; it is difficult for them to ask for help, and if they do, there is no guarantee they will receive it (Kellezi & Reicher, 2012; Stevenson, McNamara, & Muldoon, 2014). This might also result in one or several family members employing avoidance strategies to cope (i.e., avoiding conversation about the illness and avoiding contact with the relative), therefore impacting family relationships (Kartalova-O’Doherty & Doherty, 2008). In contrast, we found that, as Cigoli and Scabini

(2006) suggest, in some families, the elements that identify a family as such are reinforced. Family bonds become stronger, renewed, and revised, especially in reference to their permanence and indissolubility. Many families, in the face of this event that they share as a common fate (O’Donnell et al., 2016), increase their sense of unity and their identity as a family. They switch to assume with more enthusiasm their family identity— over each one’s personal identity—and make it become more salient (Reicher, 1987), reassessing in the process who they are as a group, as well as their values and strengths. They change and endure in that process. To this respect, the Social Identity Model of Change sup- ports the idea that a family identity that is maintained throughout can buffer SMI’s negative consequences (Jetten & Pachana, 2012). Regarding this point, King and Wynne (2004) pro-

posed the construct of family integrity to refer to a personal sense of meaning, connection, and continuity with the family that becomes more important in adult- hood. Previous studies about perceived family conti- nuity (PFC) showed how it is related to a sense of belonging and to psychological well-being. In those studies, the intermediate step between PFC and its pos- itive psychological effect is found in family identification

(FId), which is the sense of belonging to a family (Herrera, Sani, & Bowe, 2011). Along these lines, we found that this sense is increased in some of the families from the studies included in this synthesis. In addition, FId and the sense of being one as a group show that family members categorise themselves within the fam- ily and that they feel that they belong to it. In other words, family members’ sense of belonging to their fam- ily makes them share a social identity, and this is the fact that, as some have identified, has a potential influence on health (Jetten et al., 2014). It also explains their be- haviour, commitment, and, in some cases, sacrifices (Turner et al., 1987). Greenaway et al. (2015) recently have demonstrated that ‘groups nurture feelings of personal control and help individuals to feel capable of pursuing and accomplishing their goals’ (p. 69, empha- sis in original), although it implies putting the collective interest (directed to one person or group) ahead of one’s own interests. It is worth noting that, in intervention studies on so-

cial identities (Haslam, 2014), the group itself is the main therapeutic agent. Experiences are shared in the group, leading group identities to be based on solidarity and connection. In our case, the family shares multiple experiences while living with SMI (changes in personal and family life and family relationships, grief over the loss, multiple and intense emotions, permanent chal- lenge, and, in some cases, acceptance), leading to the presence of a bond and solidarity among the different members. In some ways, family relationships are put to test in a time of crisis, and previous family weaknesses and strengths emerge (Cigoli & Scabini, 2006). In contrast to identification with a stigmatised group (Crabtree et al., 2010), the family and its members identify and recognise themselves not only in light of what makes them different and susceptible to stigma but also in light of what unites them and makes them a family. Groups (e.g., the family) become the ‘vehicle’ that brings change to fruition (Haslam, 2014) by making their members feel supported, esteemed, and capable (Greenaway et al., 2015). In this case, ill family members are supported by their family, loved by their family, and empowered by the fact of belonging to their family. The sense of obligation, responsibility, and giving,

which the family experiences, is found in similar pieces of research (Rowe, 2012; Weimand, Hall-Lord, Sällström, & Hedelin, 2013). Cigoli and Scabini (2006) refer to this senses as both one of the characteristics of the family bond, ‘the family bond rests on a foundation of trust and hope, and develops if it respects justice, loy- alty and obligation’ (Scabini & Manzi, 2011, p. 570, em- phasis added), and as a dynamic component of what a family is. The latter sense is grounded in giving and in the debt acquired with the giving person. The exchange starts with a gift and with gratitude, accompanied by an acquired sense of debt. Weimand et al. (2013), for their part, refer to the ambivalence that this dynamic gener- ates when another person’s well-being trumps one’s own well-being.

Á. R. Acero et al.Family identity and severe mental illness

Another aspect that is reinforced for many families is the way in which the family assumes the role of care- giver, especially of the ill member, but also of the whole family. As in previous studies, we found that the pre- dominant role of the mother, the strain, and the difficul- ties that arise are also present (Calderon, 2011; Millier et al., 2014) and are consistent with other studies con- ducted on chronic illnesses and family, as well as with a significant number of publications on the effect of be- ing a carer (National Alliance for Caregiving & AARP, 2009). However, it is worth noting the nuance of a mandatory nature and the desire to take care of an ill relative, something that has also been found in other studies and that could be related to the fact that some caregivers report positive effects on quality of life and present a decrease in mortality (Brown et al., 2009) in contrast to the outcomes typically reported (Millier et al., 2014). In our review, we observe how families do want to provide care during the time necessary in spite of any negative effects and that they also become subject matter experts. These findings are similar to those found in Rowe’s (2012) article. In this way, an experience that is at first glance indi-

vidual, such as SMI, is experienced collectively (i.e., in families that take on the MI as a ‘common fate’), and the needs that are initially personal transform each fam- ily members’ identity and their relationships. The collec- tive experience present in a family with SMI allows its members to redefine their identity as a group, to rein- force their characteristics as a family (bonds, relation- ships, love for who they are, and mutual care), and to achieve a stronger identification and salience of them- selves as a group (shared social identity) (Cigoli & Scabini, 2006; O’Donnell et al., 2016; Páez & Rimé, 2014). SMI thus emphasises existent aspects of family identity, which include caring and nurturing, but it also changes and transforms the family by redefining it pri- marily in terms of its caring roles. This entire process is framed within cultural understandings and individual family stories of what it means to be a family.

Cultural aspects

Depending on the population in which research is per- formed, cultural factors become more evident, as found in studies by Bedoya and Builes (2013), Huang et al. (2009), and Penny et al. (2009). These cultural factors also likely define the different ways in which family identity changes. These findings coincide with other studies that have yielded differences between MI and, for example, the type of culture and personality traits (Caldwell-Harris & Aycicegi, 2006) or the prognosis and outcomes in accordance with the level of the country’s development (Kalra, Bhugra, & Shah, 2012). In our synthesis, we specifically found that culture

shapes beliefs about what a family is and about SMI and its consequences. Culture deeply influences how and if a family considers itself primarily responsible for an ill relative’s care (in familistic cultures) or how and if a family identifies itself as belonging to a stigmatised

group (Huang et al., 2009). The former may result in the salience of family identity leading to a larger source of support, which could, in turn, be related to family members providing more direct care in countries with a predominately family-oriented culture (familism), in contrast to countries with a predominately individualis- tic culture (Lefley, 1996; Seeman, 1988). The latter case may result in care being a greater source of stress and in families getting involved in it less or in more difficulty accepting their relative as a result of the ‘negative’ conno- tations associated with their group identity (Branscombe, Fernández, Gómez, & Cronin, 2012; Larson & Corrigan, 2008; Phelan et al., 1998; van der Sanden et al., 2013). With the systemic theory and the ecological theory of

human development taken as a reference (Rosa & Tudge, 2013), it seems fair to claim that family identity represents the interrelationship between multiple con- texts and systems. Therefore, the way in which family identity changes in each case is shaped by multiple nu- ances present in culture, a specific country’s economic development, inherent family characteristics, family members’ particular characteristics, the influence that these unique elements have on each person and family’s history and co biography, and so forth.

Implications

The findings herein explored are important because when we understand how a family’s identity is trans- formed, and the aspects that influence it, more effective interventions can be implemented to ‘repair’ affected relationships, to strengthen existing ones, and to bolster the recovery process for both the ill person and the en- tire family (Gehart, 2012b). For example, for many fam- ilies, the experience of SMI offers a way to strengthen their family identity and to effectively become a social cure by means of the physical and psychological sup- port, the feeling of being loved, and the increase of their ability to control the situation—individually and as a group. In this way, they are able to understand their value as persons and as families, despite the illness and its implications. This is to say, they can ‘…live a mean- ingful life in a community (…) while striving to archive his or her—and their—full potential’ (U.S. Department of Health and Human Services, 2004). However, other families experience negative identity aspects, such as stigma, shame and rejection, chronic grief, or even the breakup of family relationships (a dynamic that is close to the ‘social curse’ described by Stevenson et al., 2014). This last point poses interesting challenges for re- search and intervention, including (i) identifying previ- ously established family identity aspects that facilitate the former outcome; (ii) understanding the effect that information and institutional support has on family identity and how timeliness of such support influences SMI (e.g., in first years after diagnosis); (iii) exploring the importance of interventions on family belief systems in countries where culture seems to play an important role in making shame and stigma a salient part of family identity; (iv) establishing additional interventions so

Á. R. Acero et al. Family identity and severe mental illness

that exhaustion and overall burden do not negatively impact an otherwise united family; and (v) identifying the special needs that families going through chronic grief may have. Furthermore, other aspects need to be explored, such as the differences in outcomes depend- ing on who falls ill and who takes on the caregiver re- sponsibility (parent caring for child, vs. child caring for adult or wife caring for husband, vs. husband caring for wife, etc.). Other fruitful research entails studying SMI that is passed on genetically. In other words, when dealing with the challenges of

SMI and resulting family dynamics, we must answer the question of which local and cultural conditions facil- itate a ‘social cure’ rather than a ‘social curse’ and what can be done to facilitate those conditions. Information garnered from these proposed lines of re-

search could be used to study and develop reinforcing mechanisms of family identity—adapted to individual families and cultures—which could facilitate increased agency and resilience in families with SMI. The mecha- nisms that reinforce family identity are found, for exam- ple, in relation to conjoined narratives and identity (Zaman & Fivush, 2013) or the eventual usefulness of strengthening the family identity of a person and the whole family so as to make coping with a specific situa- tion easier—in this case SMI—as has been observed in other health areas (Douglas, 2012). In addition, it is important to note that of the studies

designed to explore family experiences only three in- clude the ill family member. Future studies might bene- fit from carrying out studies that include the family both conceptually and methodologically, that is to say, stud- ies in which the mentally ill relative takes part in inter- views and narratives. This would make perfect sense given the role of conjoined narratives in family identity (Koenig Kellas, 2005). All in all, the family is the first group to which human

beings belong and, for most people, it is the most signif- icant. Therefore, family identity as a shared social iden- tity deserves and requires major research and intervention when it comes to living with, and recover- ing from, SMI.

Conflict of Interest

The authors declare that there are no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Supporting Information

Additional supporting information may be found in the online version of this article at the publisher’s web-site.

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