‘I no longer know that person’: Grief and loss in families living with someone using crystal methamphetamine

Background: Although crystal methamphetamine (‘ice’) use is a large and growing worldwide problem, few research studies have explored the impact of crystal methamphetamine use on affected friends and family members. In order to inform the development of a Family and Friend Support Program for those affected by someone else’s use of ice, the experiences and narratives of family members and friends were explored. Methods: This paper reports on a subset of ndings from a mixed method study, which sought to better understand the experiences of affected friends and family members of people using ice. Participants were recruited via a Facebook ad and asked to complete a survey outlining their experiences. At the end of the survey, participants were invited to be interviewed by the clinical psychologist on the research team, to discuss their experiences in greater depth. Seventeen people (out of the 39 who completed the survey) agreed to be interviewed. This paper is based on a qualitative thematic analysis of those seventeen interviews conducted with family members and friends of people using ice. Results: The thematic analysis highlighted common areas of concern and experience. Key themes emerged from the thematic analysis, namely loss, stigma, support (or lack thereof), ways of coping, and the value in sharing personal experiences. The pre-eminent theme was that of grief and loss. Concepts of ambiguous loss, disenfranchised grief, and narrative constructivist approaches to understanding loss were applied to the analysis of results. Loss was often compounded by social constructions and stigma attached to ice usage, which extended to the people caring for friends and family members as well. Conclusion: The experiences of the people interviewed in relation to a person in their life who was using ice, were complicated by social constructions of the drug itself. It emerged that this resulted in grief processes which were made more complex because of the stigma attached to the use of ice. These results warrant further clinical consideration and research. a subset of ndings from a mixed method study, of family (AFFMs), to the Family and Friend Support (FFSP). The involved online quantitative surveys and qualitative telephone interviews conducted with family members, partners, and friends of people using


Background
Crystal methamphetamine ('ice') use has received considerable media attention in recent years, mostly relating to the nancial and social 'burden' caused by high dependency on this drug. The 2016 National Drug Strategy Household Survey found that 6.3% or 1.3 million Australians over the age of 14 had used methamphetamine (including ice, speed or base) and 1.4% reported recent use (in the past 12 months) (1). Ice use not only affects people who use the drug, but also their families, friends and communities (2).
Families providing support to a person with a substance use disorder often experience considerable strain, which can negatively impact many areas of their life including their own health and wellbeing (3)(4)(5). For this reason, families and friends affected by substance use disorders are increasingly viewed as a group who require support and assistance in their own right (6). Findings from two decades of qualitative research highlight the adverse impacts of general substance use on families, especially on parents, spouses, and children (7).
Despite rising societal concern about ice, relatively little is known about the impact of an individual's ice use on their family and friends. One exception is the Asante and Lentoor (2017) study, which identi ed the psychosocial challenges for mothers whose adult children use ice in South Africa. Women who participated in this study reported a number of signi cant challenges, including regular exposure to violence and crime by their son or daughter using ice.
This present paper reports on a subset of ndings from a mixed method study, which sought to better understand the experiences of affected friends and family members (AFFMs), to inform the development of a Family and Friend Support Program (FFSP). The study involved online quantitative surveys and qualitative telephone interviews conducted with family members, partners, and friends of people using ice. This paper reports on the ndings of the qualitative interviews, drawing out key themes of loss, stigma, support (or lack thereof), ways of coping, and the value in sharing personal experiences.
Since experiences of 'grief and loss' were found to permeate across all themes identi ed in this study, a decision was made to apply contemporary grief and loss theories to the discussion of ndings. In doing so, the paper extends on previous research exploring the experiences of AFFMs (8)(9)(10), including work in the Australian context which focused on stigma (11). There has not, however, been speci c consideration of the grief and loss friends and family members can experience when someone they are close to uses ice; nor has there been an exploration of the grief which arises whilst the family member or friend is living -other research speaking of grief through death. Key conceptualisations of grief and loss applied in this paper are outlined below.

Conceptualising grief and loss
There is currently limited literature exploring the grief and loss experiences of AFFM's who inhabit the world of the person using alcohol/other drugs. Existing literature focuses either on the grief processes of the person using alcohol/other drugs (12) or on families' experiences of grief when a person using drugs dies (13). The intangible grief that can occur while a person using drugs is still present requires further examination.
Historically, grief and loss was conceptualised, primarily, as a response to death (14); traditional grief and loss theorists promoted detachment from the deceased, and investment in new relationships (15,16).
Contemporary theorists challenge the notion that there is one 'right' way of grieving, and are more interested in understanding how people grieve (17)(18)(19)(20). Further, constructivist theorists have a keen interest in exploring people's personal stories, or 'narratives', of loss and the distinct meanings they draw from this experience, which are neither objective nor de ned (21)(22)(23).The degree to which this loss con rms or challenges a person's worldview is believed to in uence their grief response. For example, the death of an older person may be more congruent with a person's expectations of loss than the loss of a child.
There has also been increased interest in grief resulting from different forms of loss (24,25), based on a recognition that change itself (be it positive or negative) can bring with it a sense of loss (24). Change may take the form of shifts in employment (25), relationships, identity, future plans, social status or development, amongst many others. Because the losses associated with these changes are often less tangible, their impact may be underestimated; the individual experiencing the loss, and those around them, may minimise or de-value the experience. Two speci c conceptualisations of loss are particularly pertinent to this experience -ambiguous loss and disenfranchised grief.
Ambiguous loss occurs when one element of a person remains, while another is lost (26). A person may either be physically lost but psychologically present (for example a person who has been reported 'missing'), or physically present but psychologically 'lost' to friends and relatives (for example, a person with dementia, mental illness, cognitive impairment or substance use disorders). This form of loss can be particularly challenging due to its amorphous nature -the person physically remains in the lives of those they know but is no longer 'known'. Disenfranchised grief locates loss within social constructs and mores (27)(28)(29)(30), which create an evaluation of the relative 'worth' of a loss and determine what forms of loss are socially acceptable to grieve (28). In this sense, the person experiencing the loss may be denied 'permission' (at an often unconscious level) to experience their loss due to the perception held culturally of the 'worthiness' of that grief.
Culturally, in Australia at least, there is a reticence to discuss issues of grief and loss. It is still seen by many people as a taboo subject (31); often as a result of fear of 'saying the wrong thing' which can lead to avoidance of deep discussion and provision of support (32).

Participants
Affected Friends and Family Members of people using ice were recruited to participate in an online survey via Facebook advertising between February and March, 2017. The survey included the "Short Questionnaire for Family Members (Affected by Addiction)" -the SQFM(AA), a 33-item questionnaire based on the stress-strain-coping-support (SSCS) model of addiction and the family (7,33). This brief questionnaire covers areas including impact on family members, the presence of physical and psychological symptoms, types of coping, and presence and helpfulness of social support. Additionally, a number of open-ended questions were used to gain insight into the experiences of affected family members and friends. Participants who completed the survey were invited to take part in a follow-up telephone interview to discuss their experiences in more detail. A total of 39 participants completed the survey. Of these, 24 agreed to be contacted for an interview. In total, 17 telephone interviews were completed. Interviews were conducted between February and April 2017. Those participants who agreed to a telephone interview were offered a $20 voucher to a music/games store. Nine interview participants were mothers of ice users. The remaining eight participants were siblings, ancés, husbands, brothers, at-mates or in-laws. This paper reports the ndings from the telephone interviews.
Interview protocol and procedure Orford,Templeton (34) approach was used to guide the telephone interviews. Interviews were semistructured and focused on a range of areas including people's experience of supporting a friend or family member using crystal methamphetamine (challenges, triumphs, journey), coping strategies, resilience factors, sources of support (for them directly, and their loved one) and gaps/barriers to accessing assistance. Interviews ranged from 60 to 90 minutes and were conducted by a clinical psychologist, who was part of the research team. While the interviews involved structured components, where possible, a free-owing narrative was encouraged, as many participants had not had the opportunity to talk about their experiences of supporting someone using ice before, and since the richness of client experience is best elicited without constraints (35,36).

Data analysis
Interviews were transcribed verbatim using OUTSCRIBE, an online transcription service. Data were analysed by the research team using a constant comparative method of inductive analysis. Initially, one independent researcher examined and coded the transcripts. The researcher then read, re-read and coded the transcripts to establish themes against each topic (open coding), thus looking for and recording emergent patterns in the words and explanations offered by the participants. Upon completion of this process a second member of the research team undertook the same process independently of the rst researcher. While frequency or consensus was an element of coding, the importance that participants attributed to a behaviour, belief or concept was considered paramount. Next, connections and comparisons were made across each topic or section, followed by making them across the entire data set (axial coding). Codes were discussed and analysed with the academic research team and a set of emergent themes agreed upon. Convergent and divergent themes are reported. This was important in capturing outlying positions and experiences.

Results
AFFMs in this study described experiencing signi cant and extreme changes to their lifestyle, working life and relationships, as well as increased psychological and nancial distress. Participants described their experiences of being close to someone using ice as 'stressful', 'chaotic', and 'unpredictable', often resulting from verbal abuse, physical aggression and violence. AFFMs reported variable levels of support for their current situation. While some had the support of other family members and friends, many others reporting experiences of social isolation. Negative stereotypes, inaccurate portrayals of ice use, and the experience of stigma were common.
A number of key themes emerged from the thematic analysis, namely loss, stigma, support (or lack thereof), ways of coping, and the value in sharing personal experiences.

Loss
The experience of loss emerged as a strong presence throughout AFFMs' stories, despite not forming part of any formal questioning. It was the pre-eminent theme, in itself, and overlapped the other identi ed themes. In telling their stories, AFFMs regularly described experiences of loss permeating through all aspects of their lives.
The experience of 'loss' covered many domains for AFFMs in the current study and was present both in discussions about the person using ice, and when the AFFM discussed themselves. Loss included actual physical loss via death: Participant 1 [woman who had lost her daughter to suicide via overdose]:"I don't understand what it did to her to help her … and take herself out" Participant 1: "But we all go, we all have battles that we need to, and, you know, as I say to myself and other people when they say that, you know, the loss of your child. But as I say, I had mine for 21 years. Some people don't have them for 21 minutes" Participant 1:"I've had a de nite change in who I am through the loss of a child".
'Loss' also permeated AFFM's stories through their descriptions of the person they once knew, someone who had changed, a known and loved person who had become seemingly lost to ice use: Participant 6:"And that broke, it broke my heart. Like I just cried because I was like, you worked so hard and that was something that was just yours. And no one else had anything to do with it. And that was something you could have been proud of. And you've lost it all." (Girlfriend of ice user who had lost his DJ business due to drug use) For some AFFMs in our study, the loss experienced was re ective, not a fully formed response; a sense of no longer 'knowing' the person using ice. The experience of loss extended to family cohesion, with many AFFM's highlighting the devastating impact of ice use on family relationships. For some, the loss of relationships and family cohesion also further limited the support they could receive from those family members, thereby isolating them further. The impact of ice use on families was pronounced; destroying and dividing families: Participant 4:"It's just destroyed the whole family…it's drawn a wedge between me and my other kids" As well as the loss of one's drug using relative, either because they had changed so substantially or through death, and the loss of the hopes and aspirations that the participants had for that relative, and for their hoped for lives together, there was also a loss of self, highlighted in the ways AFFM's described how they had altered as a person, as a result of living with someone who was using ice. This included both loss of self to psychological distress, as well as the loss of self, resultant from disruption to life roles and activities. The loss reported by AFFMs was not linear and interviewees found it challenging to 'resolve' because it was also in uenced by the nuance of hope and cycles of despair.
Participant 8:"You'll have her out, she'll be back here in a couple of days and we'll be dealing with the same shit" Participant 5:"You're feeling despair, and there are no words that are going to comfort a mother's heart from that despair" Respondents often re ected on this cycle with comments such as: Being 'lost' was a particular word which arose on a multitude of occasions. For most participants it was incredibly di cult to fathom why and how they had, not only lost a sense of the person they love, but lost themselves in the process. In summary, participants spoke of family breakdown, changes in family dynamics, feeling dislocated from family, friends and society, and the loss of the person using ice, as well as the loss of their own sense of 'self'; all associated with their loved one's use of ice. There was evidence of complex emotions ranging from despair (participant 7"…because we were just over it") to fear (Participant 8"I did put a lock on my door last year when she was threatening me") to guilt (Participant 1"…and I'll never forgive myself").
This led to an experience of living with or supporting a person using ice that was characterised by guilt, shame, and stigma. The impact of experiencing loss that could not be openly acknowledged was also signi cant.
The experience of stigma The experience of stigma on affected family members and friends was evident throughout many stories, with AFFMs frequently reporting social isolation as a result. This further extended to include discussions about the stigma of ice use and the di culties of public grieving. AFFMs suggested that the stigma of ice use added to their isolation and, therefore, inhibited the grieving process. One participant encapsulated this by saying: Participant1:"Because I still think there's such a stigma attached to saying out loud my son or daughter uses ice. I don't say it out loud".
Fear of social disapprobation meant sadness was often internalised. One participant described this with the metaphor - Participants spoke of a systemic lack of support. This ranged from friends and family to mental health services and police. Many associated this with negative societal perceptions of the relative worth of people using ice, highlighting a link between lack of support and stigma: Participant 8:"I rang the police station, they told me to ring the MST team. I rang the MST team, they told me to ring somewhere else. I rang somewhere else, they told me it was the police's responsibility. I rang back the police, they told me it wasn't their responsibility. Thirty phone calls later…. Nobody was responsible" Participant 10:"Ice addicts come into accident and emergency and you see things like that, and they're horrible despicable people, but the person loves them doesn't think that way, and sometimes they just need support from other people who are in the situation. They're not bad people and someone does care about how they are feeling" Ways of coping Participants described the ways in which they tried to 'cope' with the impact of their loved one using ice. Some strategies were practical (e.g., information garnering). Others involved talking to someone (although complicated by responses of some people and value judgements). Several participants described seeking 'comfort' through eating, exercise or watching television. Still others spoke of a need to write and re ect. Participants often ignored their own needs to prioritise those of the person with the addiction.
For some participants time and prioritising self were challenging.
Participant 11:"He thinks I should do counselling but, um, it's just trying to t it in." Participant 7:"So, your health, your mental health, your physical health, your emotional health, becomes, just goes further and further down the list… and the same with all your other family members. So, because the problem is so consuming that it just covers everything else" Participant 12:"I've tried to help my brother to the point that it's been to my own detriment." On a positive note, one participant named belief as a means of surviving.
Participant 13:"How have I coped? Because I've always had hope." The value in sharing personal experiences Participants spoke of a desire to generate support for other people in a similar situation through the sharing of their story.
Participant 1:"When this tragedy happened, we all looked at each other and went, yeah this can shatter families. This won't shatter our family. There's got to be something good that comes out of a tragedy" This was a highly motivating reason for participation and far exceeded people's interest in a tangible gain. (Participants were offered a music store voucher -some declined and others chose to give the voucher to someone else.) Parallel to this altruistic motivation was a valuing in being able to tell their story in a non-judgemental climate.

Discussion
The purpose of the study was to explore the experiences of family and friends who were living with or supporting someone using crystal methamphetamine. Seventeen interviews were conducted with AFFM's in which participants shared their experiences of the impact of the ice usage on their lives. The theme of grief and loss was pre-eminent in our interviews with AFFMs of people using ice and therefore forms the focus of this paper. For participants in this study loss was discussed in relation to a number of issuesloss of the person the participant once knew, loss of their hopes and aspirations for what that person might have achieved, loss of their own planned or hoped for future, and also loss of self, through being in both a familial (or friendship) relationship as well as that of carer.
This study illustrates the multiple burdens experienced by AFFMs, leading to stress and strain and negative life impacts. This con rms the ndings of previous studies which show impacts on family member well-being. (3)(4)(5)37). This research also a rms previous research attesting to the importance of family members and friends being perceived as requiring assistance in their own right, and not solely in relation to the person with the ice usage issue (6).
The ndings of this paper, however, extend upon this body of knowledge by examining the impact for participants in managing their own grief whilst contending with societal expectations. Participants in this study had to manage their own, often complex experiences-sometimes hopeful and sometimes despairing-of change. At the same time, they had to contend with the judgements and expectations of others, not only about the use of drugs and the people who use them, but also about families and friends who support people with a substance use disorder. This can lead to feelings of isolation, even from within people's close social circles, from whom they would normally draw support. From a theoretical perspective, this rendered their grief disenfranchised (17,18,20); the loss was not readily perceived as such by both participants and the people in their immediate social circles, making it di cult for them to share their pain and feelings of grief with others. Combining this disenfranchised grief with the stigma and isolation that these AFFMs experienced and described compounds the complexity of the experience of AFFMs of people using ice.
Their own, often changeable experiences -sometimes hopeful and sometimes despairing of changewere rendered even more problematic because the support from others was, in their words, in uenced by the nature of the drug, namely ice. Participants spoke of experiencing judgement of their loved one and of themselves for continuing to support that loved one. This is one of the ndings of this research: how families and friends have to manage their grief whilst contending with societal expectations about how (and even if) they should grieve. The loss was often not readily perceived as such by both the participants and people within their circles. There was a stigma attached to the usage of ice and this extended to the people supporting the person with the addiction. This creates a lack of societal permission to grieve the change.
'Loss' was present in AFFM's stories through their descriptions of the person they once knew; someone who had changed. Participants in the current study described a separation of the person they knew from the reality of the person affected by ice usage. Respondents attested to feeling ongoing love and affection for their family member or friend but identi ed that the person had changed, perhaps irrevocably. Respondents articulated viewing the person using ice as one entity, separate from their loved one's identity. This nding is consistent with ambiguous loss (26) in that the person living with the substance use disorder was physically present; however, family and friends either felt psychologically estranged from the person or had made a conscious choice to separate the former relationship from the current one.
A third nding from the research was a very strong commitment by participants to telling their story.
Participants in the current study described dislocation, bewilderment, anger, anguish, denial; a myriad of (very reasonable) emotions as a way of dealing with the loss of the relationship they had known. Key to this process was a quest to try to 'make sense' and to create a narrative (and sometimes counternarrative). This was evidenced by the very process of engagement with this research. Participants wanted to tell their story. Having their narrative heard and validated was important to participants, as was a sense of hoping this story would be of support to others and help in their meaning-making journey. Participants described a sense of wanting to help others through participating in the research. One commented that the research was timely to their desire to contribute to others. Along with this sense of altruism was also a consciousness of the nature of story-telling as a healing process -a hope to place their individual experience in a broader context. This desire to share story and to use language to make sense of the world is consistent with the constructivist notion of 'meaning making' (21)(22)(23) in that participants were able to nd some meaning to their loss through the process of recounting their story.

Conclusions
The loss of a loved one (in any manifested shape or form) is life changing. The world is never quite as it was. Participants in this project unreservedly shared their narrative -which was often one of sadness, frustration and loss. Their grief and loss was found to be emblematic of ambiguous and disenfranchised grief. It was also about trying to make meaning of the change.
Participants living with or supporting loved ones using ice spoke of not telling anyone how they felt because of the fear of social judgement. For a person losing the sense of someone they love, it can be unhelpful to also add the management of the expectations of others. It is di cult to make meaning because of the mixed messages received -blame attribution, guilt, and lack of 'logical' explanation as to why they are continuing to support a person with this particular addiction.
While the sample size for this research is relatively small (seventeen participants) the majority of respondents' stories included loss which was not linear in nature. This suggests that an area for further research and clinical consideration is an exploration of the idea that the ambiguous nature of particular forms of loss, combined with societal disenfranchisement, hinder meaning-making. Put simply, it makes the grieving process more di cult. Societal constructions and the cycles of hope and despair described by participants rendered the grief process more di cult. Meaning-making, in this context of 'losing' someone to ice use is, therefore, a discursive process.
Developing an understanding of the challenges faced by AFFM's, by allowing them the opportunity to share their story, highlights the ways in which human services professionals can provide support to this group. Participants described a plethora of emotions, having found themselves on a path, not of their choosing, trying to support their loved one, while at the same time, maintaining some semblance of a normal life. This is a population group not seeking help for themselves. However, when given the opportunity to share their story, and situate themselves within the power of that narrative, some of the isolation and disempowerment was mitigated. It was in this way the data led to the development of an online Family and Friends Support Program. In nding their voices through this research an unanticipated consequence became the possibility for participants to nd some meaning and even contemplate a return to their sense of 'self', albeit one altered by this experience. "I want to make sure it's not everything all the time as well. I can't allow that to happen. I've got to have my own life as well, you know".