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‘You Just Lose the People You Know’: Relationship Loss and Mental Illness
Archives of Psychiatric Nursing 29 (2015) 96–101
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Archives of Psychiatric Nursing journal homepage: www.elsevier.com/locate/apnu
‘You Just Lose the People You Know’: Relationship Loss and Mental Illness Amy E.Z. Baker ⁎, Nicholas G. Procter School of Nursing and Midwifery, University of South Australia, Adelaide, Australia
a b s t r a c t The purpose of this qualitative study was to explore the nature, scope and consequences of losses resulting from mental illness. This paper presents findings from a key theme of this study—the loss of relationships. Thematic analysis revealed two categories: loss of intimate relationships, which included subcategories of (i) spouses/partners, (ii) children/parenthood, (iii) family, and (iv) friends; and (2) people within the community, such as people at church and support groups. Relationships are seen as one of the most crucial yet challenging elements to recovery and wellbeing for people affected by mental illness. © 2014 Elsevier Inc. All rights reserved.
Humans need other humans for countless reasons, including to help construct and validate our life stories (Jeffs, 2009), to sustain us, and to help us discover alternative possibilities for the future (MacIntyre, 2009). For people with a mental illness, relationships and the presence of supportive others comprise a key part of the recovery process (Jeffs, 2009). Recovery in mental health is viewed as a way of living a satisfying, hopeful and contributing life, despite the limitations caused by illness (Anthony, 1993). Reflecting on his own experiences of mental ill-health, psychiatrist Fisher (2003, p. 67) described several relationships crucial to his recovery: ‘The most important elements in my recovery were a therapist who believed in me, the support of my family, steadfast friends, and meaningful work.’ Relationships need to be steeped in certain qualities, such as trust, understanding, and safety (Fisher, 2003), which may provide a source of hope (Davidson, 2003) and validation, as Jeffs (2009, p. 183) notes: The more fragile we are the more validation we need. Yet mental illness may cause us to lose those people around us who can give us that validation. Many people with a mental illness experience loneliness or perceive that their social needs are not addressed adequately (Borba et al., 2011; Nilsson, Nåden, & Lindström, 2008), with lost relationships or contacts being a major contributor (Mauritz & van Meijel, 2009). Relationship losses reported to affect people with a mental illness, include the loss of: friends (Borba et al., 2011; Chernomas, Clarke, & Marchinko, 2008, Mauritz & van Meijel, 2009, McKay, 2010, Nilsson et al., 2008), partners or spouses (Nilsson et al., 2008), family (Borba et al., 2011), children (Borba et al., 2011; Fernandez, Breen, & Simpson, 2014) and colleagues (Mauritz & van Meijel, 2009, Nilsson et al., 2008). Work carried out in the School of Nursing and Midwifery, University of South Australia. ⁎ Corresponding Author: Amy Baker, PhD, BHlthSc(Hons)(OccTh), BAppSc(OccTh), School of Nursing and Midwifery, University of South Australia, City East Campus, GPO Box 2471, Adelaide SA 5001. E-mail address: [email protected] (A.E.Z. Baker). http://dx.doi.org/10.1016/j.apnu.2014.11.007 0883-9417/© 2014 Elsevier Inc. All rights reserved.
Relationship losses for people with a mental illness have been described in terms of a lack of fellowship and relief (Nilsson et al., 2008), ‘not belonging’ and the loss of place in a social milieu (Mauritz & van Meijel, 2009). Roles or other aspects related to relationships may also be lost, such as the loss of a sexual self (Quinn & Browne, 2009), loss of social status or credibility and loss of a sense of parenthood in losing relationships with children (Fernandez et al., 2014). Factors thought to lead to a loss of relationships or social opportunities for people with a mental illness include: stigma (Proudfoot et al., 2009), frequent changes in living arrangements, lost employment or educational opportunities (Chernomas et al., 2008), as well as their mental health condition itself (Borba et al., 2011). Despite the range of losses reported to result from mental illness, few studies have set out to explore this topic (Baker, Procter, & Gibbons, 2009). Furthermore, as a research topic, loss from mental illness has been confined due to design, such as pre-determined surveys (e.g., Stein, Dworsky, Phillips, & Hunt, 2005) or by assumptions, e.g., grief or mourning must occur in response to loss (e.g., Mauritz & van Meijel, 2009). The purpose of the current study was to explore the nature, scope and consequences of losses that may result from mental illness. This paper presents findings from a key theme of this study—loss of relationships. PARTICIPANTS AND METHODS Setting and Participants This study took place at a community mental health centre (CMHC) in metropolitan Adelaide, South Australia. Inclusion criteria were adults who had been diagnosed with a mental illness and who attended the CMHC. Participants were recruited through convenience sampling over a period of 9 months, during which the first author promoted the project via weekly information meetings and flyers. Sixteen participants chose to participate (see Table 1 for further information about participants).
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in this study: member checking; using thick, rich description to convey findings and self-reflection through journaling.
Table 1 Participant Characteristics. Characteristic Gender Age Diagnosisa
Time since diagnosis Work status at time of study Relationship status at time of study Religious affiliation
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Study participants (N = 16) Female (n = 11); male (n = 5) Mean age = 48; range 39 to 59 years Major depression (n = 9); bipolar disorder (n = 7); anxiety disorder (n = 3); schizoaffective disorder (n = 2); borderline personality disorder (n = 2); schizophrenia (n = 2); obsessive compulsive disorder (n = 1) b5 years (n = 4); 5–10 years (n = 1); 10–15 years (n = 4); N15 years (n = 7; range = 18 to 32 years) Not working (n = 12); part-time (n = 2); casual (n = 2) Divorced or separated (n = 11); single (n = 2); married (n = 2); widowed (n = 1) Christian (n = 8); none (n = 8)
a Self-report of diagnosis from a health professional; includes multiple diagnoses for 10 participants. Some participants had received two (n = 7), three (n = 2), or four (n = 1) different diagnoses.
Study Design and Methods A participatory action research (PAR) approach guided this study, selected for its social nature and responsiveness towards topics that are meaningful to participants (Rempfer & Knott, 2001; Schneider, 2012). PAR engages participants as co-researchers in order to study, analyse (Rempfer & Knott, 2001) and deepen understanding of issues of interest (Brydon-Miller, Kral, Maguire, Noffke, & Sabhlok, 2011), and ultimately regain control over their lives (Hutchinson & Lovell, 2013)—ideals shared with the recovery approach in mental health (Rempfer & Knott, 2001). Though focus groups were mainly used in the later stages of the study, findings presented here stem from the initial phase (reconnaissance)—the longest phase of this study—which involved gathering initial descriptive data and identifying issues from participants' perspectives (Kemmis, McTaggart, & Nixon, 2014). Semistructured, in-depth interviews were chosen during this phase. Interviews were conducted by the first author and occurred in a private room at the CMHC, varying in length from 30 minutes to 2 hours. Key interview questions asked of all participants included: Do you think your experience of mental illness has resulted in loss(es)?If so, can you tell me about the loss(es) you experienced from mental illness?What were the consequences of the loss(es) you think resulted from mental illness? The interviewer asked probing questions to explore responses in further detail. As participants engaged differently in the interview process, ultimately it was necessary to be flexible in framing questions (Green & Thorogood, 2009). Data Analysis Interviews were transcribed verbatim and returned to participants for member-checking. Thematic analysis, guided by Dey's (1993) processes for qualitative analysis, was undertaken and assisted by the use of NVivo (version 9) and mind-mapping techniques. Analysis involved moving between a detailed approach (interactive reading and annotating each transcript to identify all relevant ‘data bits’), a middle-order approach (clustering ‘data bits’ and mapping each participant's story), and a broader holistic approach (mapping across participants' stories to establish themes). Rigor and Trustworthiness During all preparation, data collection and analyses, a journal was maintained to document experiences and theoretical ideas. The following strategies were adopted to ensure reliability and trustworthiness
Ethical Considerations The study was approved by the University of South Australia's Human Research Ethics Committee and the Ethics of Human Research Committee within the Central Northern Adelaide Health Service. All participants provided informed consent via a written consent form, witnessed by a staff member and one other person at the CMHC. All identifiable information was removed, e.g., names are pseudonyms. Findings Though presented elsewhere—being reported within a different theme from this study—this introductory section summarises important background information to the findings reported in this paper. In the current study, lost relationships were the most prominent type of loss that participants described as a possible cause for their illness. Relationship losses participants viewed as causes or contributors to the onset of mental illness included the loss of family through death, loss of acceptance or support from others due to prejudices, loss of intimate relationships, and the loss of supportive or nurturing relationships in childhood due to abuse or neglect (Baker & Procter, 2013). Findings for the theme reported here were organised into two core categories, loss of: intimate relationships (partners, children, family or friends), and people in the community (e.g., people at church). Participants' perceived reasons for losing relationships and the impact of these losses are also described throughout the findings. Meanings participants assigned to relationships were also clear, such as this quote by one participant, Casper: I lost my sociability…I was going to the bottle-shop…getting a sixpack, going home and drinking it all by myself. Drinking is a sociable thing. Man is a sociable animal. The recognition of humans as ‘sociable animals’ or the desire to be social beings was interwoven throughout many participants' accounts of loss. Loss of Intimate Relationships This category includes the subcategories of the loss of: spouse or partner, children, other family, friends, including the roles associated with these relationships. Before exploring each of these types of loss, it is important to note that often these losses did not occur in isolation. The interconnectedness of losses was explained by several participants, such as Grace: …to do with the loss of husband, the marriage…the loss of my dream house and property…everything I'd worked for…that all coincides with my illness, because that was the cause of it. From Grace's viewpoint, mental illness not only caused the loss of a key relationship in her life but dismantled long-term plans associated with this relationship. Loss of Spouse or Partner The loss, or potential loss, of a spouse or partner was experienced by 12 participants, with most attributing the relationship breakdown to mental illness. Sue, who experienced a loss of marriage whilst unwell, encountered another relationship loss when her partner died by suicide. Consequently, Sue was faced by the impact of her mental illness and her partner's. Hospitalisation also contributed to the loss of a spouse or partner, such as for Dianne:
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I lost my husband. He dropped me off at [the psychiatric hospital] and said he didn't want [anything] to do with me…he couldn't take care of me anymore because of my mental illness, which means I lost my whole home and everything. Dianne's experience further shows how one loss may perpetuate others. One participant separated temporarily from her husband and was hesitant about the relationship's future due to her spouse's lack of awareness about mental illness. Mick decided not to tell his wife about his mental illness, through 20 years of marriage and despite several major breakdowns in this time. The decision to disguise his illness, and the lack of trust this harboured, were major factors in the demise of Mick's marriage: I was in a terrible turmoil whether I should tell her or not…if I told her, she definitely wouldn't have married me…I was also thinking that I could be passing it on, if we had children…I felt terribly guilty that I didn't tell her…because I felt like…she's just wasted 20 years of her life being married to me. Guilt and other feelings such as sadness, devastation and loneliness, were often noted in relation to losing a partner. Grace felt responsible for losses to others after divorce, such as lost friendships between her family and ex-husband. The loss of a ‘normal married life' was also expressed by two participants, including Sue: I always had this…idea of getting married and having children… but it's never worked out, so in a way it's a loss of having a normal married life.
Loss of Children and Parenthood Of the 13 participants who were parents, 10 described losing their child(ren) in some form. Three women experienced the death of their child, including one whose baby died in a house fire and another whose son died by suicide. For Dianne, although her baby son died, parenting experiences prior to his death were lost due to being unwell: …I lost him through death…but I lost a bit of the time [and] freedom I had with him because I was put in a mother and baby home because people…didn't think I could take care of him. Eight participants associated the loss of their child(ren), whether temporary or permanent, with mental illness. Avril believes she lost the relationship with both of her children due to mental illness, adding how her children acted disrespectfully towards her, e.g., taking video footage of her whilst unwell. Avril wanted the relationship with her children to be restored yet indicated she had relinquished this dream. Several participants described losing a sense of being a parent and acknowledged how this affected their children. For example, two women noted they were not interested in interacting with their teenage daughters because of the way depression affected them, as Avril explained: ‘I think [my daughter] craved a lot of love, which, I couldn't provide for her at the time.’ Mick describes how mental illness impacted on his sense of being a father: I've lost…the ability to act natural with my son, and feel like I'm…a proper father…I lost that, father–son thing…it's at the point where I don't really want him to come over, but I do because I love him so much…but when he comes over, I don't know what to do with him. One participant described her distress at not knowing who her children were when they visited hospital, recounting how strange it felt. For Grace, a loss of motherhood occurred when she was affected by severe postnatal depression. Compounding her feelings of loss, Grace could not remember this period in her life, saying she ‘missed out’ on those early moments of parenthood. Lost relationships with children often occurred due to lost relationships with partners. Jane only saw her
children once a fortnight as her ex-husband believed she was incapable of caring for them. This had severe implications for Jane's relationship with her children and role as a mother, describing this as her most significant loss. Jo described a different reason for losing her child: …he lives with his father… I didn't do anything about that because I thought that if I went to court and they said that I had a mental illness…it probably wouldn't be worth fighting for. I always see the bad outcome before even trying…I don't know these things for a fact because I don't follow through. For Jo, the threat of having to disclose her mental illness was the reason for not seeking joint custody of her son. Loss of Family Four participants spoke about losing family members due to mental illness or related factors. Three participants discussed this loss in the context of being hospitalised, such as Bonnie: I lost my sister-in-law's respect. She…couldn't handle the fact that I'd been in [a psychiatric hospital]…that nearly killed me…my sister-in-law's attitude. Loss of family was one of many things Ruth perceived had been lost from her time in hospital. Two participants noted a strained relationship with family due to the taboo of mental illness, leading to a loss of support, including a lack of understanding about the need to take medication. Bonnie felt she lost the position in her family as a functioning person but did not elaborate on this issue. Loss of Friends Twelve participants described losing friends due to mental illness. A loss of friends was the first thing Sandy noticed when he first became depressed: Friends would come and see you, one came, I'd been going fishing with him every Friday night for about 10 years…he saw me once in hospital and I haven't seen him since…you wondered why, what had you done wrong? Had you offended them? Sandy was left pondering and confused about why his friends left him. Others provided suggestions for why their friendships disintegrated, such as Avril who sensed friends thought she was odd and Dianne who believed her friends had lost patience with her. Several people noted how friends did not understand their illness or believe they were unwell, causing strain and the eventual loss of some friendships. Loss of friends also precipitated from other losses in participants' lives, such as lost employment or mutual friends lost from divorce. Issues of reciprocity also contributed to the loss of some friendships. For example, Faye, Jack and Hills believed they gave, without receiving, friendship in return. In contrast, Casper acknowledged that loss of his friendships occurred as both parties were not making an effort: Not only were they not…coming and seeing me, I stopped going and seeing them because I felt so depressed. Sue recalls losing friends early in her experience of mental illness, when voices told her that her friends hated her. Sue ‘disappeared’ interstate for a year, returning to find her friends had moved on. Sue and others described losing friends as sad, devastating and isolating, as well as regretful in the cases where participants felt responsible for the friendship breakdown. Two people described the loss of friendships as the main loss from mental illness. Jo stated it was the most important loss in her life, in the sense of both losing past friends and in forming new friendships. Jo attributed the loss of friends to her fright, worry and paranoia about what people thought of her and noted how alcohol would assist her to mask these issues.
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Jo also wanted to share her experiences with friends but felt it would result in the following outcome: …if I tell my friend that I have a mental illness, then they won't want to know me anymore…so I won't…it's a loss of my friends so I don't tell them. Several people spoke about how their friendships were confined to other clients at the CMHC, as was the case for Faye: …they say come here…I enjoy that but I don't have a friend like at the weekend to catch up with…just watching the telly and always by myself. Faye was one of three women who lost friends when her marriage dissolved, explaining she did not realise, until much later, the importance of friends. Faye also used the metaphor of doors opening and closing to explain her struggle to gain new friendships: All the doors just seemed to shut off and there's nothing opening up, so that's why…I got so upset and felt like…nothing's changed. Faye's story also revealed a lack of ‘authentic friendships’. This was also apparent for Jack, who noted having acquaintances but not ‘real’ friends, a concept that was explored further: Researcher: how would you define a ‘real friend’, what…would you be looking forJack: − someone that's open. Big point, very big point, honest… someone that's real, not deviants, liars…I've had enough of that. Factors that affected participants' ability to form new friendships included a loss of self-confidence, outgoingness and ability to relate to others; as Dianne added: …it's rebuilding friendships because people get hurt as well when you start thinking [they are] a devil and you have to attack them… or a voice tells you they were against you so you have to…protect yourself from them, and that can be a violent way…you have to spend a long time trying to build up their trust again…after you've treated them like that…you don't always get that, and you lose, you just lose the people you know. Dianne explained how mental illness impacted on others and the difficulties she had in making amends with friends, particularly in relation to trust. The issue of trust was also discussed in terms of participants no longer being able to trust others, with this generally being linked to incidents where participants were taken advantage of, or where others were dishonest with them. Hope that relationships would be restored or gained was also expressed.
Loss of People in the Community Four participants described losing people within their community including people at church, support or community groups, and health services. For two participants who lost people at church, this occurred after periods of psychosis. Dianne had attended a church for 16 years, but felt the people at church did not understand mental illness: Sometimes my own mental illness caused a great deal of…loss with the church when I started thinking that they're the devils in my house…I had religious delusions but the church couldn't see it as religious delusions. Similarly, Faye felt people at her church did not understand mental illness properly:
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I had schizophrenia but I didn't know it then…I was hearing voices and…getting into my Bible study…preaching all the wrong stuff… that's when they say…Satan gets in. Faye describes being ‘not allowed’ to attend this church after she was involved in an inappropriate affair with her church minister. At this stage, Faye was undiagnosed, untreated and without suitable supports, noting that: ‘everything just got mixed up’. Faye felt she was poorly treated by people at this church and not accepted in other churches she later attended. For example, Faye recalled being scolded in front of fellow churchgoers at one church for being unable to ‘speak in tongues’, leaving her feeling embarrassed and excluded. Dianne identified why church was not a suitable environment when she was unwell: Being in the church was the last place I should have been…it was actually feeding my religious delusions…making it even worse for the church until in the end I started shouting and screaming at God in the church service…after that they didn't want me there. Although people at the church tried to ‘hang in there’ alongside Dianne, there became a point where they ‘could not handle’ her behaviour anymore, resulting in her being banned, which left her feeling rejected and suicidal. Dianne suggested many of the losses she experienced with individuals and groups in the community were her ‘own fault’ but also noted how others did not understand enough about mental illness: When they start to see you get better they expect instant perfection, ‘this person's better, therefore this person should be behaving well’, but they don't understand that you've lost that ability…to know how to…just talk or relate to someone…you haven't practised them for so long, you've been in the hospital…you've lost relating to people in the real world. Faye was particularly concerned about the lack of reciprocity in her relationships with members of community groups she was involved in, noting: ‘unless I ring up they don't ring me at all’. Loss of relationships in the community also included loss of people in healthcare services. Ruth acknowledged the constant loss of mental health specialists within the public health system as a problem: For years it was ‘…how are you going, need a script?’ and ‘Won't see you next time because I'm becoming a radio announcer’…then you go three months time and you'd have to divulge …saying…negative stuff over and over to doctors didn't really give you a positive feeling. When Ella became unwell, she experienced a loss of health services which she thought tied to a loss of trust and privacy from health professionals with whom she worked for at the time. Dianne also experienced a loss of health services on being ‘thrown out’ of the CMHC three times as a worker did not understand her needs. Though rocked by a series of losses and difficulties in her relationships, Dianne was determined to rebuild her relationships, yet acknowledged it as challenging: I've tried to rebuild again. Each episode everybody remembers and you get a reputation, and so it gets harder and harder each time.
DISCUSSION All participants in this study experienced the loss of one or more relationship(s) in their lives due to mental illness or related factors. A range of issues, including emotions, behaviours and others' lack of understanding of mental illness, were perceived to cause or contribute to the loss of relationships, with consequences ranging from emotional reactions to further losses for participants. To further understand the nature and consequences of relationship losses, it is critical to examine the wider context of how participants perceived relationships, including
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the meanings or goods participants assigned to these relationships. Explored alongside perceived reasons for losing relationships, these meanings further highlight the consequences of such losses. Consideration of the reasons, impact and meanings associated with relationship losses helps to explain people's ability or inability, desire or aversion to seek out new relationships and rebuild lost ones. Fig. 1 summarises these elements, with the left hand side showing perceived reasons for relationship losses and the subsequent impact of these losses, labelled with a quote from Dianne: ‘You just lose the people you know’. The right hand side of Fig. 1, depicted by Casper's statement, ‘Man is a sociable animal’, shows factors perceived as important to gaining or maintaining relationships and the impact of such relationships. Beginning with ‘Factors contributing to the loss of relationships’ (top left-hand quadrant of Fig. 1), behaviour and beliefs influencing relationship loss included times when symptoms were not controlled, ‘weird’ behaviour, or the belief—often during psychosis—that friends hated them. Perceived lack of support or understanding from others was also noted as a contributing factor, including that participants were engaging in deliberately bad behaviour, were lazy or could ‘snap out of it’. Some relationship losses were thought to occur from other losses, such as the loss of: work, another relationship or social skills. Though not in reference to the same losses noted here, Mauritz and van Meijel (2009) also described how, in the context of schizophrenia, a loss of contacts and quality of interaction with others stemmed from other losses, such as cognitive ability. Lack of authenticity referred to several concepts, including a loss of reciprocity, trust and honesty within relationships. Participants in a study by Chernomas et al. (2008) also reported the importance of reciprocity in friendships. In line with recommendations of Chernomas and colleagues, further study into this concept is warranted. In the lower left quadrant of Fig. 1, ‘Impact of losing relationships’, a range of emotions and reactions were associated with lost relationships, including sadness, devastation and suicidal ideation. Some feelings indicated lost relationships affected participants' sense of place in a social milieu, as described previously by Mauritz and van Meijel (2009), such as feeling: isolated, rejected, disrespected, abandoned and excluded. Regret, remorse and guilt were also experienced by some participants who felt responsible for lost relationships and the effect upon others in
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their life. Due to prior lost relationships, and to avoid further relationship losses, several people refrained from disclosing their mental illness. Several participants observed that some losses resulted in losses to others also, such as loss of relationships for family members after a marriage breakdown. Many people observed that lost relationships generated other losses, such as the loss of a house, children or financial security. Thus, not only were some relationship losses thought to result from other losses in participants' lives, but some were perceived to generate losses also. The consequences of lost relationships were compounded by difficulties in maintaining relationships and gaining new ones (bottom right-hand quadrant of Fig. 1). Despite attempts and strategies to gain new friendships, several participants talked about the dearth of opportunities for meeting new people, a situation described elsewhere (Chernomas et al., 2008). The hope of forming new relationships was further complicated by a perceived inability to disclose one's mental illness, as described under the previous quadrant. A range of qualities and attitudes were thought to assist or constrain the ability to build and preserve relationships, including having self-confidence, self-belief, social skills, hope and courage, particularly after losing social skills from hospitalisation or in times whilst unwell. Perseverance, though not stated directly, was also implicit in many participants' stories of gaining or maintaining relationships. For participants who had experienced relationships marked by dishonesty, having trust in others was thought to affect their ability to gain and maintain relationships. Reactions from others, such as forgiveness, empathy, and others' understanding of mental illness also contributed to whether relationships could be built or kept, the latter being reported previously (Mauritz & van Meijel, 2009). Finally, as shown in the top right hand quadrant of Fig. 1, many participants discussed, or alluded to, the importance of relationships. For some participants, this was not directly articulated but evident within their stories of lost relationships and hope for the mending of old, or formation of new, relationships. The importance of socialising was mentioned by several participants, such as Casper's observation that humans are ‘sociable animals’. Some participants desired someone to bond with, lean on, or provide support. It was also noted that others helped to fulfil norms or roles, such as being married or a parent.
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• • • • Fig. 1. ‘Man is a sociable animal’ but with mental illness ‘you just lose the people you know’.
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Fig. 1 is cyclical to demonstrate the interconnectedness of the value of relationships and the impact when relationships are lost. The cycle of loss and restoration of relationships was also central to many participants' experiences, as Dianne describes: I'm trying to restore some of the losses…it's always this rebuilding, and then losing, and then rebuilding again, and then you get sick and you lose again…you think well what's the point…because every time you keep rebuilding, you have an episode and then you lose again…it's this constant thing all the time. Some of the losses that may be faced by people with a mental illness, such as the loss of reality, ability to communicate, or self-respect, may lead people to inadvertently sever ties with their loved ones. Karp (1996, p. 28) describes this as the paradox of greatly desiring connection whilst being: ‘simultaneously deprived of the ability to realize it’. This dilemma creates challenges for both people who have a mental illness trying to reach out to others, and in others trying to reach out to them. One important strategy for supporting people to restore or develop relationships and avoid further relationship loss involves a sustained effort to build awareness about mental illness in the community. In this study, the value and meaning participants assigned to people in their lives, suggests the work of restoring, rebuilding or developing relationships is a vital part of being in recovery and flourishing as a human being; work which therefore must be pursued by those who wish to help. Important to acknowledge is that this study focused on the experiences of a relatively small number of adults, affected by a range of mental illnesses, at one community mental health centre. Thus, the findings should be approached with caution. However, relatively few studies have sought to explore the topic of loss from mental illness and so the findings are important in shedding light on this matter. In particular, this study showed how relationship losses can be understood within the context of meanings attributed to relationships. The factors that are important to gaining and maintaining relationships, from the perspective of people with lived experience of mental illness, require further attention within practice and research. Furthermore, the resources people with a mental illness and their supports perceive would help in responding to relationship losses are currently unknown, warranting further research.
Acknowledgment The authors wish to acknowledge Bellberry Ltd for their generous support in providing a research scholarship to the first author. We also wish to thank the participants and support from staff at the community mental health centre where this study occurred.
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References Anthony, W. A. (1993). Recovery from mental illness: The guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16, 11–24. Baker, A. E. Z., Procter, N., & Gibbons, T. (2009). Dimensions of loss from mental illness. Journal of Sociology & Social Welfare, 36(4), 25–52. Baker, A. E. Z., & Procter, N. G. (2013). A qualitative inquiry into consumer beliefs about the causes of mental illness. Journal of Psychiatric and Mental Health Nursing, 20(5), 442–447. Borba, C. P. C., DePadilla, L., Druss, B. G., McCarty, F. A., von Esenwein, S. A., & Sterk, C. E. (2011). A day in the life of women with a serious mental illness: A qualitative investigation. Women's Health Issues, 21(4), 286–292. Brydon-Miller, M., Kral, M., Maguire, P., Noffke, S., & Sabhlok, A. (2011). Jazz and the Banyan Tree: Roots and riffs on participatory action research. In N. K. Denzin, & Y. S. Lincoln (Eds.), The Sage Handbook of Qualitative Research (4th ed.). California: SAGE Publications. Chernomas, W. M., Clarke, D. E., & Marchinko, S. (2008). Relationship-based support for women living with serious mental illness. Issues in Mental Health Nursing, 29, 437–453. Davidson, L. (2003). Living outside mental illness: Qualitative studies of recovery in schizophrenia. New York: New York University Press. Dey, I. (1993). Qualitative data analysis: A user-friendly guide for social scientists. London: Routledge. Fernandez, M. E., Breen, L. J., & Simpson, T. A. (2014). Renegotiating Identities: Experiences of loss and recovery for women with bipolar disorder. Qualitative Health Research, 24(7), 890–900. Fisher, D. B. (2003). People are more important than pills in recovery from mental disorder. Journal of Humanistic Psychology, 43, 65–68. Green, J., & Thorogood, N. (2009). Qualitative Methods for Health Research (2nd ed.). London: SAGE Publications. Hutchinson, A., & Lovell, A. (2013). Participatory action research: moving beyond the mental heath ‘service user’ identity. Journal of Psychiatric and Mental Health Nursing, 20, 641–649. Jeffs, S. (2009). Flying with paper wings: Reflections on living with madness. Carlton North, Australia: The Vulgar Press. Karp, D. A. (1996). Speaking of Sadness: Depression, disconnection and the meanings of illness. New York: Oxford University Press. Kemmis, S., McTaggart, R., & Nixon, R. (2014). The action research planner: Doing critical participatory action research. Singapore: Springer. MacIntyre, A. (2009). Dependent rational animals: Why human beings need the virtues. Illinois: Open Court. Mauritz, M., & van Meijel, B. (2009). Loss and grief in patients with schizophrenia: On living in another world. Archives of Psychiatric Nursing, 23, 251–260. McKay, E. A. (2010). ‘Rip that book up, I've changed’: Unveiling the experiences of women living with and surviving enduring mental illness. British Journal of Occupational Therapy, 73, 96–105. Nilsson, B., Nåden, D., & Lindström, U.Å. (2008). The tune of want in the loneliness melody—Loneliness experienced by people with serious mental suffering. Scandinavian Journal of Caring Sciences, 22, 161–169. Proudfoot, J. G., Parker, G. B., Benoit, M., Manicavasagar, V., Smith, M., & Gayed, A. (2009). What happens after diagnosis? Understanding the experiences of patients with newly-diagnosed bipolar disorder. Health Expectations, 12, 120–129. Quinn, C., & Browne, G. (2009). Sexuality of people living with a mental illness: A collaborative challenge for mental health nurses. International Journal of Mental Health Nursing, 18, 195–203. Rempfer, M., & Knott, J. (2001). Participatory action research: A model for establishing partnerships between mental health researchers and persons with psychiatric disabilities. In C. Brown (Ed.), Recovery and wellness: Models of hope and empowerment for people with mental illness. New York: The Haworth Press. Schneider, B. (2012). Participatory Action Research, Mental Health Service User Research, and the Hearing (our) Voices Projects. International Journal of Qualitative Methods, 11(2), 152–165. Stein, C. H., Dworsky, D. O., Phillips, R. E., & Hunt, M. G. (2005). Measuring personal loss among adults coping with serious mental illness. Community Mental Health Journal, 41, 129–139.
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Archives of Psychiatric Nursing journal homepage: www.elsevier.com/locate/apnu
‘You Just Lose the People You Know’: Relationship Loss and Mental Illness Amy E.Z. Baker ⁎, Nicholas G. Procter School of Nursing and Midwifery, University of South Australia, Adelaide, Australia
a b s t r a c t The purpose of this qualitative study was to explore the nature, scope and consequences of losses resulting from mental illness. This paper presents findings from a key theme of this study—the loss of relationships. Thematic analysis revealed two categories: loss of intimate relationships, which included subcategories of (i) spouses/partners, (ii) children/parenthood, (iii) family, and (iv) friends; and (2) people within the community, such as people at church and support groups. Relationships are seen as one of the most crucial yet challenging elements to recovery and wellbeing for people affected by mental illness. © 2014 Elsevier Inc. All rights reserved.
Humans need other humans for countless reasons, including to help construct and validate our life stories (Jeffs, 2009), to sustain us, and to help us discover alternative possibilities for the future (MacIntyre, 2009). For people with a mental illness, relationships and the presence of supportive others comprise a key part of the recovery process (Jeffs, 2009). Recovery in mental health is viewed as a way of living a satisfying, hopeful and contributing life, despite the limitations caused by illness (Anthony, 1993). Reflecting on his own experiences of mental ill-health, psychiatrist Fisher (2003, p. 67) described several relationships crucial to his recovery: ‘The most important elements in my recovery were a therapist who believed in me, the support of my family, steadfast friends, and meaningful work.’ Relationships need to be steeped in certain qualities, such as trust, understanding, and safety (Fisher, 2003), which may provide a source of hope (Davidson, 2003) and validation, as Jeffs (2009, p. 183) notes: The more fragile we are the more validation we need. Yet mental illness may cause us to lose those people around us who can give us that validation. Many people with a mental illness experience loneliness or perceive that their social needs are not addressed adequately (Borba et al., 2011; Nilsson, Nåden, & Lindström, 2008), with lost relationships or contacts being a major contributor (Mauritz & van Meijel, 2009). Relationship losses reported to affect people with a mental illness, include the loss of: friends (Borba et al., 2011; Chernomas, Clarke, & Marchinko, 2008, Mauritz & van Meijel, 2009, McKay, 2010, Nilsson et al., 2008), partners or spouses (Nilsson et al., 2008), family (Borba et al., 2011), children (Borba et al., 2011; Fernandez, Breen, & Simpson, 2014) and colleagues (Mauritz & van Meijel, 2009, Nilsson et al., 2008). Work carried out in the School of Nursing and Midwifery, University of South Australia. ⁎ Corresponding Author: Amy Baker, PhD, BHlthSc(Hons)(OccTh), BAppSc(OccTh), School of Nursing and Midwifery, University of South Australia, City East Campus, GPO Box 2471, Adelaide SA 5001. E-mail address: [email protected] (A.E.Z. Baker). http://dx.doi.org/10.1016/j.apnu.2014.11.007 0883-9417/© 2014 Elsevier Inc. All rights reserved.
Relationship losses for people with a mental illness have been described in terms of a lack of fellowship and relief (Nilsson et al., 2008), ‘not belonging’ and the loss of place in a social milieu (Mauritz & van Meijel, 2009). Roles or other aspects related to relationships may also be lost, such as the loss of a sexual self (Quinn & Browne, 2009), loss of social status or credibility and loss of a sense of parenthood in losing relationships with children (Fernandez et al., 2014). Factors thought to lead to a loss of relationships or social opportunities for people with a mental illness include: stigma (Proudfoot et al., 2009), frequent changes in living arrangements, lost employment or educational opportunities (Chernomas et al., 2008), as well as their mental health condition itself (Borba et al., 2011). Despite the range of losses reported to result from mental illness, few studies have set out to explore this topic (Baker, Procter, & Gibbons, 2009). Furthermore, as a research topic, loss from mental illness has been confined due to design, such as pre-determined surveys (e.g., Stein, Dworsky, Phillips, & Hunt, 2005) or by assumptions, e.g., grief or mourning must occur in response to loss (e.g., Mauritz & van Meijel, 2009). The purpose of the current study was to explore the nature, scope and consequences of losses that may result from mental illness. This paper presents findings from a key theme of this study—loss of relationships. PARTICIPANTS AND METHODS Setting and Participants This study took place at a community mental health centre (CMHC) in metropolitan Adelaide, South Australia. Inclusion criteria were adults who had been diagnosed with a mental illness and who attended the CMHC. Participants were recruited through convenience sampling over a period of 9 months, during which the first author promoted the project via weekly information meetings and flyers. Sixteen participants chose to participate (see Table 1 for further information about participants).
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in this study: member checking; using thick, rich description to convey findings and self-reflection through journaling.
Table 1 Participant Characteristics. Characteristic Gender Age Diagnosisa
Time since diagnosis Work status at time of study Relationship status at time of study Religious affiliation
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Study participants (N = 16) Female (n = 11); male (n = 5) Mean age = 48; range 39 to 59 years Major depression (n = 9); bipolar disorder (n = 7); anxiety disorder (n = 3); schizoaffective disorder (n = 2); borderline personality disorder (n = 2); schizophrenia (n = 2); obsessive compulsive disorder (n = 1) b5 years (n = 4); 5–10 years (n = 1); 10–15 years (n = 4); N15 years (n = 7; range = 18 to 32 years) Not working (n = 12); part-time (n = 2); casual (n = 2) Divorced or separated (n = 11); single (n = 2); married (n = 2); widowed (n = 1) Christian (n = 8); none (n = 8)
a Self-report of diagnosis from a health professional; includes multiple diagnoses for 10 participants. Some participants had received two (n = 7), three (n = 2), or four (n = 1) different diagnoses.
Study Design and Methods A participatory action research (PAR) approach guided this study, selected for its social nature and responsiveness towards topics that are meaningful to participants (Rempfer & Knott, 2001; Schneider, 2012). PAR engages participants as co-researchers in order to study, analyse (Rempfer & Knott, 2001) and deepen understanding of issues of interest (Brydon-Miller, Kral, Maguire, Noffke, & Sabhlok, 2011), and ultimately regain control over their lives (Hutchinson & Lovell, 2013)—ideals shared with the recovery approach in mental health (Rempfer & Knott, 2001). Though focus groups were mainly used in the later stages of the study, findings presented here stem from the initial phase (reconnaissance)—the longest phase of this study—which involved gathering initial descriptive data and identifying issues from participants' perspectives (Kemmis, McTaggart, & Nixon, 2014). Semistructured, in-depth interviews were chosen during this phase. Interviews were conducted by the first author and occurred in a private room at the CMHC, varying in length from 30 minutes to 2 hours. Key interview questions asked of all participants included: Do you think your experience of mental illness has resulted in loss(es)?If so, can you tell me about the loss(es) you experienced from mental illness?What were the consequences of the loss(es) you think resulted from mental illness? The interviewer asked probing questions to explore responses in further detail. As participants engaged differently in the interview process, ultimately it was necessary to be flexible in framing questions (Green & Thorogood, 2009). Data Analysis Interviews were transcribed verbatim and returned to participants for member-checking. Thematic analysis, guided by Dey's (1993) processes for qualitative analysis, was undertaken and assisted by the use of NVivo (version 9) and mind-mapping techniques. Analysis involved moving between a detailed approach (interactive reading and annotating each transcript to identify all relevant ‘data bits’), a middle-order approach (clustering ‘data bits’ and mapping each participant's story), and a broader holistic approach (mapping across participants' stories to establish themes). Rigor and Trustworthiness During all preparation, data collection and analyses, a journal was maintained to document experiences and theoretical ideas. The following strategies were adopted to ensure reliability and trustworthiness
Ethical Considerations The study was approved by the University of South Australia's Human Research Ethics Committee and the Ethics of Human Research Committee within the Central Northern Adelaide Health Service. All participants provided informed consent via a written consent form, witnessed by a staff member and one other person at the CMHC. All identifiable information was removed, e.g., names are pseudonyms. Findings Though presented elsewhere—being reported within a different theme from this study—this introductory section summarises important background information to the findings reported in this paper. In the current study, lost relationships were the most prominent type of loss that participants described as a possible cause for their illness. Relationship losses participants viewed as causes or contributors to the onset of mental illness included the loss of family through death, loss of acceptance or support from others due to prejudices, loss of intimate relationships, and the loss of supportive or nurturing relationships in childhood due to abuse or neglect (Baker & Procter, 2013). Findings for the theme reported here were organised into two core categories, loss of: intimate relationships (partners, children, family or friends), and people in the community (e.g., people at church). Participants' perceived reasons for losing relationships and the impact of these losses are also described throughout the findings. Meanings participants assigned to relationships were also clear, such as this quote by one participant, Casper: I lost my sociability…I was going to the bottle-shop…getting a sixpack, going home and drinking it all by myself. Drinking is a sociable thing. Man is a sociable animal. The recognition of humans as ‘sociable animals’ or the desire to be social beings was interwoven throughout many participants' accounts of loss. Loss of Intimate Relationships This category includes the subcategories of the loss of: spouse or partner, children, other family, friends, including the roles associated with these relationships. Before exploring each of these types of loss, it is important to note that often these losses did not occur in isolation. The interconnectedness of losses was explained by several participants, such as Grace: …to do with the loss of husband, the marriage…the loss of my dream house and property…everything I'd worked for…that all coincides with my illness, because that was the cause of it. From Grace's viewpoint, mental illness not only caused the loss of a key relationship in her life but dismantled long-term plans associated with this relationship. Loss of Spouse or Partner The loss, or potential loss, of a spouse or partner was experienced by 12 participants, with most attributing the relationship breakdown to mental illness. Sue, who experienced a loss of marriage whilst unwell, encountered another relationship loss when her partner died by suicide. Consequently, Sue was faced by the impact of her mental illness and her partner's. Hospitalisation also contributed to the loss of a spouse or partner, such as for Dianne:
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I lost my husband. He dropped me off at [the psychiatric hospital] and said he didn't want [anything] to do with me…he couldn't take care of me anymore because of my mental illness, which means I lost my whole home and everything. Dianne's experience further shows how one loss may perpetuate others. One participant separated temporarily from her husband and was hesitant about the relationship's future due to her spouse's lack of awareness about mental illness. Mick decided not to tell his wife about his mental illness, through 20 years of marriage and despite several major breakdowns in this time. The decision to disguise his illness, and the lack of trust this harboured, were major factors in the demise of Mick's marriage: I was in a terrible turmoil whether I should tell her or not…if I told her, she definitely wouldn't have married me…I was also thinking that I could be passing it on, if we had children…I felt terribly guilty that I didn't tell her…because I felt like…she's just wasted 20 years of her life being married to me. Guilt and other feelings such as sadness, devastation and loneliness, were often noted in relation to losing a partner. Grace felt responsible for losses to others after divorce, such as lost friendships between her family and ex-husband. The loss of a ‘normal married life' was also expressed by two participants, including Sue: I always had this…idea of getting married and having children… but it's never worked out, so in a way it's a loss of having a normal married life.
Loss of Children and Parenthood Of the 13 participants who were parents, 10 described losing their child(ren) in some form. Three women experienced the death of their child, including one whose baby died in a house fire and another whose son died by suicide. For Dianne, although her baby son died, parenting experiences prior to his death were lost due to being unwell: …I lost him through death…but I lost a bit of the time [and] freedom I had with him because I was put in a mother and baby home because people…didn't think I could take care of him. Eight participants associated the loss of their child(ren), whether temporary or permanent, with mental illness. Avril believes she lost the relationship with both of her children due to mental illness, adding how her children acted disrespectfully towards her, e.g., taking video footage of her whilst unwell. Avril wanted the relationship with her children to be restored yet indicated she had relinquished this dream. Several participants described losing a sense of being a parent and acknowledged how this affected their children. For example, two women noted they were not interested in interacting with their teenage daughters because of the way depression affected them, as Avril explained: ‘I think [my daughter] craved a lot of love, which, I couldn't provide for her at the time.’ Mick describes how mental illness impacted on his sense of being a father: I've lost…the ability to act natural with my son, and feel like I'm…a proper father…I lost that, father–son thing…it's at the point where I don't really want him to come over, but I do because I love him so much…but when he comes over, I don't know what to do with him. One participant described her distress at not knowing who her children were when they visited hospital, recounting how strange it felt. For Grace, a loss of motherhood occurred when she was affected by severe postnatal depression. Compounding her feelings of loss, Grace could not remember this period in her life, saying she ‘missed out’ on those early moments of parenthood. Lost relationships with children often occurred due to lost relationships with partners. Jane only saw her
children once a fortnight as her ex-husband believed she was incapable of caring for them. This had severe implications for Jane's relationship with her children and role as a mother, describing this as her most significant loss. Jo described a different reason for losing her child: …he lives with his father… I didn't do anything about that because I thought that if I went to court and they said that I had a mental illness…it probably wouldn't be worth fighting for. I always see the bad outcome before even trying…I don't know these things for a fact because I don't follow through. For Jo, the threat of having to disclose her mental illness was the reason for not seeking joint custody of her son. Loss of Family Four participants spoke about losing family members due to mental illness or related factors. Three participants discussed this loss in the context of being hospitalised, such as Bonnie: I lost my sister-in-law's respect. She…couldn't handle the fact that I'd been in [a psychiatric hospital]…that nearly killed me…my sister-in-law's attitude. Loss of family was one of many things Ruth perceived had been lost from her time in hospital. Two participants noted a strained relationship with family due to the taboo of mental illness, leading to a loss of support, including a lack of understanding about the need to take medication. Bonnie felt she lost the position in her family as a functioning person but did not elaborate on this issue. Loss of Friends Twelve participants described losing friends due to mental illness. A loss of friends was the first thing Sandy noticed when he first became depressed: Friends would come and see you, one came, I'd been going fishing with him every Friday night for about 10 years…he saw me once in hospital and I haven't seen him since…you wondered why, what had you done wrong? Had you offended them? Sandy was left pondering and confused about why his friends left him. Others provided suggestions for why their friendships disintegrated, such as Avril who sensed friends thought she was odd and Dianne who believed her friends had lost patience with her. Several people noted how friends did not understand their illness or believe they were unwell, causing strain and the eventual loss of some friendships. Loss of friends also precipitated from other losses in participants' lives, such as lost employment or mutual friends lost from divorce. Issues of reciprocity also contributed to the loss of some friendships. For example, Faye, Jack and Hills believed they gave, without receiving, friendship in return. In contrast, Casper acknowledged that loss of his friendships occurred as both parties were not making an effort: Not only were they not…coming and seeing me, I stopped going and seeing them because I felt so depressed. Sue recalls losing friends early in her experience of mental illness, when voices told her that her friends hated her. Sue ‘disappeared’ interstate for a year, returning to find her friends had moved on. Sue and others described losing friends as sad, devastating and isolating, as well as regretful in the cases where participants felt responsible for the friendship breakdown. Two people described the loss of friendships as the main loss from mental illness. Jo stated it was the most important loss in her life, in the sense of both losing past friends and in forming new friendships. Jo attributed the loss of friends to her fright, worry and paranoia about what people thought of her and noted how alcohol would assist her to mask these issues.
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Jo also wanted to share her experiences with friends but felt it would result in the following outcome: …if I tell my friend that I have a mental illness, then they won't want to know me anymore…so I won't…it's a loss of my friends so I don't tell them. Several people spoke about how their friendships were confined to other clients at the CMHC, as was the case for Faye: …they say come here…I enjoy that but I don't have a friend like at the weekend to catch up with…just watching the telly and always by myself. Faye was one of three women who lost friends when her marriage dissolved, explaining she did not realise, until much later, the importance of friends. Faye also used the metaphor of doors opening and closing to explain her struggle to gain new friendships: All the doors just seemed to shut off and there's nothing opening up, so that's why…I got so upset and felt like…nothing's changed. Faye's story also revealed a lack of ‘authentic friendships’. This was also apparent for Jack, who noted having acquaintances but not ‘real’ friends, a concept that was explored further: Researcher: how would you define a ‘real friend’, what…would you be looking forJack: − someone that's open. Big point, very big point, honest… someone that's real, not deviants, liars…I've had enough of that. Factors that affected participants' ability to form new friendships included a loss of self-confidence, outgoingness and ability to relate to others; as Dianne added: …it's rebuilding friendships because people get hurt as well when you start thinking [they are] a devil and you have to attack them… or a voice tells you they were against you so you have to…protect yourself from them, and that can be a violent way…you have to spend a long time trying to build up their trust again…after you've treated them like that…you don't always get that, and you lose, you just lose the people you know. Dianne explained how mental illness impacted on others and the difficulties she had in making amends with friends, particularly in relation to trust. The issue of trust was also discussed in terms of participants no longer being able to trust others, with this generally being linked to incidents where participants were taken advantage of, or where others were dishonest with them. Hope that relationships would be restored or gained was also expressed.
Loss of People in the Community Four participants described losing people within their community including people at church, support or community groups, and health services. For two participants who lost people at church, this occurred after periods of psychosis. Dianne had attended a church for 16 years, but felt the people at church did not understand mental illness: Sometimes my own mental illness caused a great deal of…loss with the church when I started thinking that they're the devils in my house…I had religious delusions but the church couldn't see it as religious delusions. Similarly, Faye felt people at her church did not understand mental illness properly:
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I had schizophrenia but I didn't know it then…I was hearing voices and…getting into my Bible study…preaching all the wrong stuff… that's when they say…Satan gets in. Faye describes being ‘not allowed’ to attend this church after she was involved in an inappropriate affair with her church minister. At this stage, Faye was undiagnosed, untreated and without suitable supports, noting that: ‘everything just got mixed up’. Faye felt she was poorly treated by people at this church and not accepted in other churches she later attended. For example, Faye recalled being scolded in front of fellow churchgoers at one church for being unable to ‘speak in tongues’, leaving her feeling embarrassed and excluded. Dianne identified why church was not a suitable environment when she was unwell: Being in the church was the last place I should have been…it was actually feeding my religious delusions…making it even worse for the church until in the end I started shouting and screaming at God in the church service…after that they didn't want me there. Although people at the church tried to ‘hang in there’ alongside Dianne, there became a point where they ‘could not handle’ her behaviour anymore, resulting in her being banned, which left her feeling rejected and suicidal. Dianne suggested many of the losses she experienced with individuals and groups in the community were her ‘own fault’ but also noted how others did not understand enough about mental illness: When they start to see you get better they expect instant perfection, ‘this person's better, therefore this person should be behaving well’, but they don't understand that you've lost that ability…to know how to…just talk or relate to someone…you haven't practised them for so long, you've been in the hospital…you've lost relating to people in the real world. Faye was particularly concerned about the lack of reciprocity in her relationships with members of community groups she was involved in, noting: ‘unless I ring up they don't ring me at all’. Loss of relationships in the community also included loss of people in healthcare services. Ruth acknowledged the constant loss of mental health specialists within the public health system as a problem: For years it was ‘…how are you going, need a script?’ and ‘Won't see you next time because I'm becoming a radio announcer’…then you go three months time and you'd have to divulge …saying…negative stuff over and over to doctors didn't really give you a positive feeling. When Ella became unwell, she experienced a loss of health services which she thought tied to a loss of trust and privacy from health professionals with whom she worked for at the time. Dianne also experienced a loss of health services on being ‘thrown out’ of the CMHC three times as a worker did not understand her needs. Though rocked by a series of losses and difficulties in her relationships, Dianne was determined to rebuild her relationships, yet acknowledged it as challenging: I've tried to rebuild again. Each episode everybody remembers and you get a reputation, and so it gets harder and harder each time.
DISCUSSION All participants in this study experienced the loss of one or more relationship(s) in their lives due to mental illness or related factors. A range of issues, including emotions, behaviours and others' lack of understanding of mental illness, were perceived to cause or contribute to the loss of relationships, with consequences ranging from emotional reactions to further losses for participants. To further understand the nature and consequences of relationship losses, it is critical to examine the wider context of how participants perceived relationships, including
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the meanings or goods participants assigned to these relationships. Explored alongside perceived reasons for losing relationships, these meanings further highlight the consequences of such losses. Consideration of the reasons, impact and meanings associated with relationship losses helps to explain people's ability or inability, desire or aversion to seek out new relationships and rebuild lost ones. Fig. 1 summarises these elements, with the left hand side showing perceived reasons for relationship losses and the subsequent impact of these losses, labelled with a quote from Dianne: ‘You just lose the people you know’. The right hand side of Fig. 1, depicted by Casper's statement, ‘Man is a sociable animal’, shows factors perceived as important to gaining or maintaining relationships and the impact of such relationships. Beginning with ‘Factors contributing to the loss of relationships’ (top left-hand quadrant of Fig. 1), behaviour and beliefs influencing relationship loss included times when symptoms were not controlled, ‘weird’ behaviour, or the belief—often during psychosis—that friends hated them. Perceived lack of support or understanding from others was also noted as a contributing factor, including that participants were engaging in deliberately bad behaviour, were lazy or could ‘snap out of it’. Some relationship losses were thought to occur from other losses, such as the loss of: work, another relationship or social skills. Though not in reference to the same losses noted here, Mauritz and van Meijel (2009) also described how, in the context of schizophrenia, a loss of contacts and quality of interaction with others stemmed from other losses, such as cognitive ability. Lack of authenticity referred to several concepts, including a loss of reciprocity, trust and honesty within relationships. Participants in a study by Chernomas et al. (2008) also reported the importance of reciprocity in friendships. In line with recommendations of Chernomas and colleagues, further study into this concept is warranted. In the lower left quadrant of Fig. 1, ‘Impact of losing relationships’, a range of emotions and reactions were associated with lost relationships, including sadness, devastation and suicidal ideation. Some feelings indicated lost relationships affected participants' sense of place in a social milieu, as described previously by Mauritz and van Meijel (2009), such as feeling: isolated, rejected, disrespected, abandoned and excluded. Regret, remorse and guilt were also experienced by some participants who felt responsible for lost relationships and the effect upon others in
• • • •
• • • •
their life. Due to prior lost relationships, and to avoid further relationship losses, several people refrained from disclosing their mental illness. Several participants observed that some losses resulted in losses to others also, such as loss of relationships for family members after a marriage breakdown. Many people observed that lost relationships generated other losses, such as the loss of a house, children or financial security. Thus, not only were some relationship losses thought to result from other losses in participants' lives, but some were perceived to generate losses also. The consequences of lost relationships were compounded by difficulties in maintaining relationships and gaining new ones (bottom right-hand quadrant of Fig. 1). Despite attempts and strategies to gain new friendships, several participants talked about the dearth of opportunities for meeting new people, a situation described elsewhere (Chernomas et al., 2008). The hope of forming new relationships was further complicated by a perceived inability to disclose one's mental illness, as described under the previous quadrant. A range of qualities and attitudes were thought to assist or constrain the ability to build and preserve relationships, including having self-confidence, self-belief, social skills, hope and courage, particularly after losing social skills from hospitalisation or in times whilst unwell. Perseverance, though not stated directly, was also implicit in many participants' stories of gaining or maintaining relationships. For participants who had experienced relationships marked by dishonesty, having trust in others was thought to affect their ability to gain and maintain relationships. Reactions from others, such as forgiveness, empathy, and others' understanding of mental illness also contributed to whether relationships could be built or kept, the latter being reported previously (Mauritz & van Meijel, 2009). Finally, as shown in the top right hand quadrant of Fig. 1, many participants discussed, or alluded to, the importance of relationships. For some participants, this was not directly articulated but evident within their stories of lost relationships and hope for the mending of old, or formation of new, relationships. The importance of socialising was mentioned by several participants, such as Casper's observation that humans are ‘sociable animals’. Some participants desired someone to bond with, lean on, or provide support. It was also noted that others helped to fulfil norms or roles, such as being married or a parent.
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• • • • Fig. 1. ‘Man is a sociable animal’ but with mental illness ‘you just lose the people you know’.
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Fig. 1 is cyclical to demonstrate the interconnectedness of the value of relationships and the impact when relationships are lost. The cycle of loss and restoration of relationships was also central to many participants' experiences, as Dianne describes: I'm trying to restore some of the losses…it's always this rebuilding, and then losing, and then rebuilding again, and then you get sick and you lose again…you think well what's the point…because every time you keep rebuilding, you have an episode and then you lose again…it's this constant thing all the time. Some of the losses that may be faced by people with a mental illness, such as the loss of reality, ability to communicate, or self-respect, may lead people to inadvertently sever ties with their loved ones. Karp (1996, p. 28) describes this as the paradox of greatly desiring connection whilst being: ‘simultaneously deprived of the ability to realize it’. This dilemma creates challenges for both people who have a mental illness trying to reach out to others, and in others trying to reach out to them. One important strategy for supporting people to restore or develop relationships and avoid further relationship loss involves a sustained effort to build awareness about mental illness in the community. In this study, the value and meaning participants assigned to people in their lives, suggests the work of restoring, rebuilding or developing relationships is a vital part of being in recovery and flourishing as a human being; work which therefore must be pursued by those who wish to help. Important to acknowledge is that this study focused on the experiences of a relatively small number of adults, affected by a range of mental illnesses, at one community mental health centre. Thus, the findings should be approached with caution. However, relatively few studies have sought to explore the topic of loss from mental illness and so the findings are important in shedding light on this matter. In particular, this study showed how relationship losses can be understood within the context of meanings attributed to relationships. The factors that are important to gaining and maintaining relationships, from the perspective of people with lived experience of mental illness, require further attention within practice and research. Furthermore, the resources people with a mental illness and their supports perceive would help in responding to relationship losses are currently unknown, warranting further research.
Acknowledgment The authors wish to acknowledge Bellberry Ltd for their generous support in providing a research scholarship to the first author. We also wish to thank the participants and support from staff at the community mental health centre where this study occurred.
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