Exploring caregiver perspectives in the context of parental substance use: A qualitative study

Abstract

Background

Parental substance use is a substantial public health and safeguarding concern. Research examining the impact of parental substance use upon children is well-established, but there is a lack of research examining how parents/caregivers cope with their parenting role within the context of another parent's substance use, or how best to support these parents/caregivers.

Objective

This paper examines the experiences and support needs of parents/caregivers impacted by another parent's substance use.

Participants

Nineteen parents/caregivers from substance exposed families via local community-based voluntary sector support organizations, in urban and rural settings in northeast England.

Methods

Qualitative, in-depth interviews with caregivers (mothers, fathers, grandparents, aunts, uncles, siblings, aged 25 to 65+ years) of dependent aged children (aged 4 to17 years) in substance exposed families. Thematic analysis explored their experiences and support needs.

Results

Cumulative stress impacted parents/caregivers in their parenting role, creating further challenges in caring for children impacted by another parent's substance use. Parents/caregivers felt their needs went unrecognized by support services, and interactions with statutory services frequently exacerbated their stress. Parents/caregivers worried about what to disclose to children about substance use and how and when to do this.

Conclusion

Parents/caregivers attempted to mitigate the risk of another parent's substance use upon the children in their care. They often perceived lack of appropriate support specifically for parents/caregivers, particularly considering the extra challenges they faced caring for children in the context of parental substance use. Resources to support parents/caregivers in talking with children about these issues may offer guidance and reassurance to caregivers to alleviate some of their stress.

Highlights

• •Parental substance use is a substantial public health and safeguarding concern.
• •Research examining parenting and the needs of caregivers within the context of another parent's substance use is limited.
• •Caregivers needs went unrecognized by support services, interactions with statutory services frequently exacerbated stress.
• •Caregivers worried about what to disclose to children about parental substance use and how and when to do this.
• •Co-produced resources to support caregivers in talking with children about parental substance use may be beneficial.

1. Introduction

Around half a million children in England are believed to live in families where a parent or caregiver has a reported alcohol or drug dependency (Children’s Commissioner, 2019). This represents a substantial public health concern (Degenhardt et al., 2013; McGovern, Newham, et al., 2021), with implications for the safeguarding of children (Canfield et al., 2017). There is well-established evidence documenting the harmful effects that parental substance use, even below the threshold of dependency, may have upon children throughout their life course (Cleaver et al., 2011), with children whose parents use substances more likely to suffer injury (Baker et al., 2015), experience physical and mental health problems, use substances themselves (Cleaver et al., 2011; McGovern et al., 2020) and have lower educational performance (Berg et al., 2016), potentially resulting in poor outcomes later in life (Cleaver et al., 2011).

Parental substance use has been found to negatively affect the structures and functioning of the family and to contribute to family breakdown. Parental substance use has been shown to disrupt family routines (Holland et al., 2014), have negative effects upon the quality of the relationship between parents and children (Cleaver et al., 2011), increase harsh parenting and reduce levels of parent-child supervision (Kelley et al., 2015) as well as increasing the likelihood of other risk factors such as domestic violence and parental mental health problems within families (Cleaver et al., 2011). The complexity of issues faced by families who experience substance use is underlined by the fact that adversities such as domestic violence and parental mental ill health are known to co-occur alongside substance use, as well as being exacerbated further by the impacts of poverty (Bywaters et al., 2022; Lacey et al., 2022; Walsh et al., 2019).

Mechanisms by which parental substance use impacts upon children include direct exposure to alcohol and/or drug use and to other users, and a greater likelihood of experiencing trauma such as abuse or neglect. Parental substance use has also been linked to ineffective parenting practices, and a reduction in parenting capacity brought about by the intoxicating effect of the substance and/or withdrawal from it, and lack of parental emotional availability and warmth (Holland et al., 2014). A systematic review of qualitative studies exploring the lived experiences of children whose parents use substances identified several main themes. Children described living with unpredictability and insecurity within the family; the social and emotional impact of parental substance use, and difficulties in coping with these; attempts to control the uncontrollable and create safety within the family; and how support often took formal and informal forms (Muir et al., 2022). Similarly, previous qualitative studies also highlight feelings of tension, manipulation, blame and overall disruption and drama within substance exposed families (Werner & Malterud, 2016). As well as feeling betrayed by caregivers who trivialized the problems and made excuses for the parent who uses substances, children described difficulties acting normally outside of the family, and faced dilemmas about disclosing family problems (Werner & Malterud, 2016).

Reducing exposure to parental substance use is important. However, this alone is not enough. Data suggests that 60–80% of parents using alcohol or drugs are not receiving treatment (Public Health England, 2021) and even when they do, a reduction in parental substance use does not always lead to better outcomes for children, who may need additional support (Barrett et al., 2023). The presence of a stable non-substance using caregiver within the family has been found to be one protective factor for children (Velleman & Templeton, 2016), but while this caregiver may be a source of support and protection to children, difficulties associated with substance use within the family may reduce their ability to protect children (Alexanderson & Näsman, 2017). Caregivers, most often mothers, feel the financial effects of substance use upon their family, and worry over the impacts upon their children (Orford et al., 2010). The cumulative and interacting nature of family stressors has been found to contribute to parents struggling to manage their own health needs alongside the needs of their children (Kedzior et al., 2024). Child welfare services may also rely heavily upon the non-using parent or other caregivers to protect children (Alexanderson & Näsman, 2017). While non-using caregivers may be a source of support for the child, the burden of managing the impact of parental substance use upon the family can leave them feeling unsupported within their caregiving role (Kedzior et al., 2024). There is a need for a whole family approach which considers the impact of substance use upon the non-using parent/caregiver (Alexanderson & Näsman, 2017), however, little is known about how best to support the non-using parent/caregiver within substance exposed families. This paper aims to examine the experiences of parents/caregivers of dependent aged children in substance exposed families, and explore the specific support needs they have in their caregiving role. An exploratory qualitative approach allowed us to explore in-depth the subjective experiences and meanings of our participants (Burr & Dick, 2017).

2. Methods

We conducted an in-depth qualitative interview study in the North East of England. The study gained approval from Newcastle University Faculty of Medical Sciences Ethics Committee (2108/11010/2021).

2.1. Sampling and recruitment

We recruited parents/caregivers from families that had sought support after being impacted by the substance use of another parent. We did not sample based upon any historic or current substance use of the caregiver themselves. Our inclusion criteria reflected the diverse compositions and needs of the families in which children lived. It included biological/non biological parents, caregivers who lived with or provided regular care to the child including kinship care by grandparents, aunts and uncles, and adult siblings, as well as those who were not directly related but had taken on care of the child through a special guardianship order. Throughout, we use the term ‘caregiver’ to refer to the non-substance using parent/caregiver who fulfils this parenting role for dependent aged children.

Recruitment was via local community-based voluntary sector support organizations, such as carer support, and kinship care organizations. These groups are set up to provide specific support for the needs of the local community, staffed by volunteers and practitioners who provide emotional and practical support, and in some cases structured programs and therapy. These services may be delivered by charitable organizations and are often funded by local authorities who have responsibility for commissioning support services to meet the public health needs of their local population. We approached organizations from across seven local authorities to ensure as wide a sample as possible, as well as reaching people who lived in rural and urban areas. We asked practitioners to approach caregivers who had accessed their services and who met the study criteria. Practitioners provided caregivers with an information leaflet which outlined the study and our aims of ‘trying to understand what support is available for caregivers within a family where a parent/caregiver uses drugs or alcohol.’ Practitioners completed a consent to contact form for caregivers that expressed interest, and these were shared with the research team. The team then contacted the caregivers to fully explain the study and give them an opportunity to ask questions and make an informed decision about participation. Caregivers had to be able to provide informed consent in English.

2.2. Data collection

We conducted semi-structured interviews with consenting caregivers (n = 19) to examine the impacts that the substance use of their family member had upon them, and to understand the types of formal and informal support they accessed, and what influenced their help-seeking decisions. Interviews were predominantly face-to-face (n = 16) either in the person's home (n = 7), a community organization (n = 6) or the university campus (n = 3). The remaining three interviews were carried out by telephone at the request of the participants. All participants were given the choice to decide where they felt most comfortable, and where was most appropriate in terms of any privacy concerns, and the presence of their children or partners for example. Each participant provided written consent to participate, and all interviews were conducted by one of two researchers (SB and DS) experienced in sensitive research with families. Protocols were in place should any participant become distressed or disclose risk of harm to themselves or others but were not activated during any of the interviews. Participants received a $10 shopping voucher as a thank you for their time. Participants were also given a debrief sheet which outlined the next steps and available support, as well as the opportunity to receive a summary of the research findings and take part in future workshops should they wish.

2.3. Data analysis

A social constructionist approach informed our analysis, to allow us to uncover the subjective experiences and meanings of our participants (Burr & Dick, 2017), and we were guided by an ethic of care perspective, appropriate for exploring families’ needs, services, and experiences (Morris & Featherstone, 2010). Interviews were transcribed verbatim by a university approved transcription company. Transcripts were anonymized and checked for accuracy and uploaded to NVivo analysis software, and participants were given pseudonyms. Three researchers (SB, DS, RM) read the transcripts and created a framework of the themes arising from the data. Rigor within qualitative research is most often considered in terms of the trustworthiness, typically defined by the credibility, transferability, dependability, and confirmability of the processes (Guba & Lincoln, 1989). Two researchers (SB and DS) coded the data in an iterative process where the team identified, discussed, and refined themes, which then informed subsequent analysis. We considered the credibility of the study in regular analysis meetings wherein we reflected upon the extent to which the interview process was capturing the social reality of the participants, and how far our findings would transfer to different contexts (such as different family configurations and caregiver roles). We finalized data collection once similar themes were recurring during the interviews.

The core research team (SB, DS, RM) consists of trained researchers with extensive experience of work with families impacted by substance use, with professional backgrounds in social work and young carer charitable organizations, as well as considerable content expertise with a history of published research in this subject area. We used analysis meetings to reflect upon how our own family and professional experiences may influence our analytical approach to the data. We then discussed our observations on the data with the wider research team (listed co-authors), which includes academics, practitioners, and people with lived experience to provide study confirmability.

3. Results

Nineteen caregivers from seven local authority areas of North East England participated in the study. We purposively sampled parents and caregivers, recruiting them via support organizations with whom they were in contact (substance use specific carer support organizations (n = 12), kinship care organization (n = 3), children's social care (n = 1) and snowball sampling (n = 3)). The sample consisted of a range of different caregivers: mothers (n = 8); fathers (n = 2); older siblings (n = 1); grandparents (n = 4); aunt (n = 2); uncle (n = 1); and other caregivers (n = 1). Caregivers (16 females, 3 males) ranged in age from 25 to 65+ years, and children were aged between 4 and 17 years.

Caregivers reported a relatively equal split between alcohol (n = 9) and other drug use (n = 10) of their family member. Poly substance use consisting of both alcohol and other drugs was described in n = 7 families. The perpetration of violence and abuse by the family member who uses substances was frequently described. The caregivers' experiences of their family member's substance use varied, and they described a wide range of different patterns of exposure and relationships. Some caregivers and their children had an ongoing relationship with the parent who uses substances, while others were separated and/or estranged from them.

The main themes we identified were challenges when caregiving in the context of a family member's substance use; interactions with support services; and talking to children about a parent's substance use. These themes are outlined in the following section, using pseudonymized, verbatim quotes.

3.1. Challenges of caregiving in the context of a family member's substance use

All caregivers described how the substance use of the parent was a source of stress which often dramatically changed their relationships. They described difficulties in coping with pressure and disruption to their lives and daily routines, feeling isolated from friends and family, and being physically and verbally abused. They also described how these impacts are further complicated when they are responsible for caring for children. Caregivers told us how cumulative stress affected them in their parenting role and spoke of the challenges of additional demands that were placed upon them when caring for dependent aged children who have also been impacted by parental substance use. Caregivers felt the weight of responsibility to protect children from subsequent harm.

For some caregivers, changes in the personality of the parent who uses substances resulted in a sense of loss. The relationship the caregiver had with the substance using parent often became fraught with worry for their wellbeing.

She was quite violent to me … we were worried she was going to kill herself; we were worried she was going to kill one of us. It's really horrible. It's the hardest thing I've ever had to go through in my life, and to watch my daughter be like that. P15, grandparent, daughter uses substances.

Participants described how they were having to deal with the practical implications of trying to help their loved one and balancing that with their own needs and the needs of the children for whom they were responsible. The majority of caregivers reported making efforts to minimize the impact of the parent's substance use upon the children. They would often attempt to shield the child from direct exposure to the parent when intoxicated or manage risks associated with inappropriate behaviors. At times this involved the caregiver putting themselves at risk or experiencing further impacts.

At the time [my daughter] was threatening suicide, I was running backwards and forwards … I would jump in the car and run over to make sure she was alright … I would have the girls upset, they would be crying in the night, and it was just - it was so hard at the time … it was very difficult to hide because I cried for weeks … it’s like you’re juggling your life. They’ve messed up and it impacts on us every week. P22, grandparent, daughter uses substances.

Caregivers described feeling trapped in their situation, with some reporting suicidal ideation, and in several cases suicide attempts. Where the caregiver was the intimate partner of the substance user, they often faced difficult decisions as to whether to end this relationship and had to carefully navigate the complexities of this situation. Participants reported feeling a responsibility to support the parent who uses substances, or a need to maintain the relationship to prevent further distress to the children.

It doesn’t seem like it is ever going to end, and I don’t feel like there is a way out of it. I must admit I have hit rock bottom a couple of times and tried to commit suicide. [On her reasons for staying in the relationship:] I won’t uproot my kids and take them into a women’s refuge … If it was just me I could up and go and just say, “Do whatever you want. Screw your life up. It doesn’t matter.” But when you’ve got a family, you’ve got to try and hold it all together. You literally feel like there is no way out of that. P11, mother, partner uses substances.

In some cases, the caregiver had attempted to stay in the relationship believing that doing so was best for their child and the family, but later had realized that staying may have caused greater harm to their children.

I think both kids had a really hard life, and I feel really guilty for that. Because I thought I was doing them a favor by staying, but I wasn’t. I was letting them witness more arguments. So that’s the main guilt I carry around. P23, father, former partner uses substances.

While for some, no longer actively maintaining a relationship with the parent who used substances had enabled them to build a better connection with their children because the other parent was for example no longer ‘consuming all my time’ (P5), several caregivers reported how they were unable to fully distance themselves from the parent who uses substances after their separation. For many caregivers this resulted in enduring emotional impacts and often included ongoing conflict.

I was in a relationship with a narcissist with alcoholic dependency. And even after we’d split up … I was literally still in the same dynamic where I would get abuse, the cycle of abuse, especially when the drinking had been going on. P16, father, former partner uses substances.

Typically, caregivers described how they had to maintain some form of relationship with the parent who uses substances, often because their children would still have contact with them, through either court mandated or more informal arrangements, and this ongoing contact and exposure was a source of worry and stress. As well as parents who separated and became the sole caregiver to their children, our sample included other family members who had taken on parental responsibility of young children. For them, this often meant abrupt, dramatic, and sometimes isolating changes in their lives.

I didn’t plan at 61 years old to have a 4-year-old and an 8-year-old … they are lovely children [but] I don’t ever see my brother and sister … my life’s changed totally, their children have all grown and I’ve gone back to being a fulltime caregiver. Friends have gone as well because that’s the same. P22, grandparent, daughter uses substances.

When this grandmother became the main caregiver to her grandchildren following her daughter's substance use problems, she found herself under pressure, and attempting to balance the needs of her daughter alongside the needs of her granddaughters.

I felt like I was in the middle balancing all the plates. It was really, really hard because from [welfare service] visits I was left with, “Right, this is what you need to do with [your daughter], and this is what you need to do with the girls.” P22, grandparent, daughter uses substances.

Those caregivers who had taken on the care of their grandchildren were suddenly and often unexpectedly responsible for the care of young children and doing so at a time of great stress for themselves and stress within the family. This was often exacerbated by the need to care for the substance using parent too. For all these caregivers, this cumulative stress, without adequate support, made the difficult job of parenting even more challenging, and was compounded by the additional financial responsibilities of caring for children.

3.2. Interactions with support services

For almost all caregivers, access to support proved difficult; this was often due to fear of judgement, stigma, uncertainty of help available, or services suggesting they were unable to help because their remit was supporting those who use substances, or because they were oversubscribed for example. This absence of support for caregivers and their children, and a recognition of their specific needs as caregivers, was compounded by their perception that many services appeared to be focused on supporting the parent who uses substances.

My biggest grievance with Social Services was I always felt that … all the help was surrounded around her [ex-partner who uses substances]. P23, father, former partner uses substances.

This created resentment for one caregiver that they had been left to deal with the impact of the substance use upon the family by themselves, while the parent who uses substances was receiving support and praised for getting help.

He’s been sending me quotes of the Narcotics Anonymous meetings and to love yourself and don’t dwell on the past and stuff, and it’s like, I’m here dealing with the kids, still dwelling on the past because I’ve got a lot of anger and hurt, and so have the kids, but he’s in a group meeting getting cheered … and it’s just like, “What about your kids? What about us? Where’s my fucking badge?” P5, mother, former partner uses substances.

Other caregivers also struggled for some time to get the support they felt they needed from child welfare services, and when these services eventually did become involved, the focus was on safeguarding the children, beyond which there was apparently no further support for caregivers.

Eventually they did send somebody out … she was coming once every 10 days … to see how things were. She brought the health visitor in as well. But then she closed the case down because she said that I was doing everything right. I wasn't letting [former partner] in. I was safeguarding the children. So, I kind of then felt I was in a worse position - because I was safeguarding nobody else would help me. P7, mother, former partner uses substances.

These caregivers therefore found themselves in the position of needing help to provide the best care possible for their children, but services saying that no help could be offered because the caregivers were deemed to be doing enough.

Often participants felt there was an absence of the help they required, and that they did not know where to find the help they needed; when they did find support, they frequently felt that this was conditional upon them leaving the relationship with the substance using parent.

Everybody thinks the help is out there, but when the chips are down there’s not. After a while she [welfare worker said], “Oh, we don’t know how we can support you anymore. There is nothing more we can do really”. This seems to be the situation I’ve concluded from everybody: If you stay with that partner and you try to make it work the support is not there anymore. They say: “Just go to a women’s refuge … there’s support there.” I’m thinking “There’s really not.” P11, mother, partner uses substances.

For those that were supported by organizations with a specific focus on carers, these groups were often a source of much needed emotional support. Participants described how sometimes anxiety had meant they were hesitant to attend group sessions, but when they had attended, these groups and the available counselling services were invaluable. Participants reported that they had not realized how much they needed this type of support until they found it. Caregivers appreciated the ability to offload and reflect about their experiences, and talk to people and not be judged, and importantly not to burden their own family who may worry, judge them or the parent who uses substances, or give unsolicited or unwanted advice. Participants also spoke of the benefits of talking in groups with people who shared similar experiences and understood the issues they were facing. However, due to the wide variety of parents and caregivers who attended some of these support groups, with different relationships to the children in their care, some grandparent caregivers described how they struggled to identify with others in the groups who ‘weren't the same as me’ (P4).

The ability to discuss how they had been impacted by substance use notwithstanding, the lack of practical help, or specific help with their role as a caregiver or dealing with cumulative stress while taking care of their children was frequently described.

“I just don't want to talk about it." Because it was just regurgitating the same stuff that I'd already lived through, and I was like, "I'm exhausted. I don't need to talk about this again." And actually, sometimes, talking about things, I found too much. Given the sense that nothing is being solved by having this conversation, I'm just telling the sixth person the same thing. P12, mother, partner uses substances.

For others, difficulties in facing their own traumas created a barrier for seeking help for themselves. Importantly, in these cases, this difficulty in facing issues impacted upon the parenting capacity of the caregiver and influenced their approach towards seeking help for the children in their care.

I don’t want them to remember. I just push it out. I’m good at blocking things out … I’m quite good at pushing it away, whereas the kids aren’t so good. I’ve got to remember that they do remember, and they do need that support. P14, mother, former partner uses substances.

For some grandparent caregivers, there was a perception that while support systems and organizations were available for formal foster carers, where the care was provided by family members they were not recognized in the same way or given the same level of support that they felt they needed.

If you're fostering, you have to go through all this training. If you're a kinship carer … you get your grandchildren who are traumatized. P15, grandparent, daughter uses substances.

One grandmother felt that there was a lack of support offered to herself and particularly to her grandchildren, exacerbated further by the extra burden placed upon her by child welfare services' expectation that she played a mediating role between them and her ‘volatile’ daughter. Caregivers therefore felt unsupported in their attempts to deal with their own stress and difficulties, and at the same time manage the impacts that parental substance use had had upon their children.

[Child welfare workers] minimized the children’s trauma, their grief, their anxiety. If they were in the foster care system or the adoptive system then it would be recognized, but [they’ve] just washed [their] hands of them. P22, grandparent, daughter uses substances.

This account further highlighted the sometimes-difficult relationship that caregivers had with child welfare services. Many felt that they were being judged and stigmatized in the same way as the parent who uses substances. Participants spoke of disclosing only what was necessary and leaving out key information when describing situations to child welfare workers. This fear of judgement and fear of disclosure about the problems they were facing having consequences for their children proved a major barrier for many caregivers seeking support.

I’m just really scared of, you know, having me been on antidepressants and being a single mum, and them going and saying that their dad’s on crack … me and the kids are still in the same place with no help from anyone, no-one to talk to about it or anything because, you know, the minute you mention drugs or alcohol, they’re straightaway on your case. P5, mother, former partner uses substances.

Caregivers described very mixed experiences around interaction with support services – some caregivers benefited from support, whereas others reported difficulty in finding and accessing support, and did not always receive the responses they were hoping for or expecting. Once they engaged in support, many found it to be helpful but were frustrated by how long it took to find, and for others the support they received felt lacking.

3.3. Talking to children about a parent's substance use

One challenge facing almost all the caregivers we spoke to was how to talk to children about the parent's substance use. Participants reported feeling uncertain about when it was appropriate to talk to children regarding substance use more generally and, in particular, they were uncertain what to disclose about how this affected their parent's behavior and ability to care for the child. For some caregivers, the prospect of needing to discuss things with children at some point in the future was a source of worry.

I’ll try and be honest with her about [her] mum, and she’ll ask us why she doesn’t live with mum, and I’ll just say, “Mum couldn’t take care of you, she couldn’t look after you and she couldn’t keep you safe.” That’s the best way to do it. It’s what I’ve been told to do. It does worry us to think in later years, like advice on what to do telling [her] things. I don’t know if [carer support organization] would have enough information about that because they’re more drugs and alcohol. I don’t know, I think I’ll just figure it out myself. P4, grandparent, son’s former partner uses substances.

Caregivers described being fearful about the impact of disclosing information about the parent's substance use to their children. They recognized that talking to their children could have positive consequences, such as a greater understanding of the parent's behaviors and acceptance that the situation was not the fault of the children. However, caregivers also expressed concerns about negative consequences of disclosure such as worrying children and exposing them to ‘hurtful’ and ‘horrible’ things that have happened. Caregivers were often torn between feeling the need to explain distressing things that the child may have witnessed and not raising the child's awareness beyond what was necessary. In particular, the maturity of the child was a factor for caregivers, and they queried how to make such discussions age appropriate.

Because I just really worry. He has this kind of like, “Oh, alcohol is a really bad thing.” But I worry about if he knows the full story as he gets older, is that going to make him even more curious? Is he going to think, “Oh, well my mum and dad went down this path. Oh right, maybe I’ll do it as well.” All those kinds of things I worry about. Doing that on my own, without having any kind of professional back up. But how do you do this? How do you educate a child properly? P3, mother, former partner uses substances.

Even in situations where participants were able to draw upon their own experiences of having a parent who uses substances, they described the need for support in having these conversations.

[my brother] used to ask me things about my mam and everything like that … I just kind of knew what to tell him because I had been through it, and I was old enough to understand what was going on. But that’s the help [you need], I think that’s the time where you need more support. P24, caregiver to brother, mother uses substances.

A common strategy adopted by some caregivers was to let the children take the lead. They would wait for children to ask questions and discuss issues when they are ready to do so. For these caregivers the prospect of disclosing too much information was seen as being potentially further damaging for their children, and they wished to protect their children from this potential harm. However, caregivers acknowledged that while they felt they had protected their children by not discussing these issues with them, they were also concerned that as a result, any help or therapy their children were receiving may not be as effective as it otherwise could be.

‘Because I have shielded him from it, there wasn’t a lot [for counsellors] to go on. I’ve kind of kept him in the dark really, I suppose, so they didn’t have a lot to work with’. P3, mother, former partner uses substances.

This highlights a dichotomy for caregivers who may wish to seek help for the child for the associated difficulties or trauma they face. Support for children often involves talking therapy, but for caregivers there is often uncertainty about what children do or do not know, and they fear that opening up the subject may cause more harm. For caregivers the prospect of their children having these conversations, either with them or with healthcare professionals, was therefore a cause for concern.

We’re very much trying to let him lead. Like I say, that was the same thing when he was doing his life story, when he was with the counsellor. It’s like she doesn’t want to poke it too much because he might have shut it off. So obviously, to try and encourage and help him deal with his feelings, but if he shut it off, she might actually do more damage. P20 & P21, caregivers to nephew, adult sibling uses substances.

Caregivers' reticence to share information often meant that the timing of these conversations was taken out of their hands. Caregivers described trying to hide things from children for as long as possible, but then having to deal with these issues when other children at school or other family members had disclosed information about the parent's substance use, violent episodes, or periods of incarceration for example. These caregivers recognized that the child's discovery of information often created more distress for the child and caused increased tension within the family.

So, I have always been truthful with them, but I haven't told them. Somebody else has, and then they would come home and ask me, and I would try and put it in a nice way. But it was hard and hurtful for them. As time is getting on, we did tell them, I think it's making her better, feel a little bit better … but with social services, and her social worker, and her helper with the drugs, they've been coming to my house lately, and they're doing a life story with her … sometimes it's a help when somebody else comes in and talks as well. And you're not the one that's there all the time, for all the blame. P19, caregiver to niece, adult sibling uses substances.

One grandmother described how the decision on what to disclose to her grandchildren and when to have these conversations was taken away from her by child welfare workers - something that had lasting consequences for the family.

I didn’t want to say all these things to them that she was drinking and taking drugs, but social services were adamant that they’ve got to know. I was just saying to them that she was poorly … her mental health is rubbish at the minute. But they [welfare services] wouldn’t have that, so they sat down and told the girls. I felt like they came in here, yes, they put it across very nicely, but within five minutes they’d gone. It was like they chucked a hand grenade in and walked out. P22, grandparent, daughter uses substances.

Others also described how the decision to disclose information had been taken out of their hands because of crises within the family, or by them witnessing their parent's substance use firsthand, something for which they also felt they lacked appropriate support to handle.

4. Discussion

This study provides a unique contribution to literature concerned with substance exposed families and shows that caregivers in families with dependent aged children experienced specific challenges relating to balancing their own needs and those of the children, against those of the parent who uses substances. Recent research highlighted that family members are not a homogenous group, and that impacts can vary by relationship, social and cultural factors (Orford, 2017). Our study has demonstrated that being a caregiver of a dependent aged child could compound the harm that family members experience, and results in cumulative stress and strain. The responsibility of the caregiver to protect the child from direct and indirect exposure to a parent's substance use often aggravated much of their own experiences and could also impact upon their ability to access and benefit from support.

We observed several similarities between the experiences of the caregivers in our study and those of caregivers who are victims/survivors of domestic violence. Many of the caregivers in our study described being fearful that they would be judged negatively by services due to the risk the substance use of the parent presented to the child. While specialist carers services were generally found to be understanding and supportive of the needs of caregivers, the participants in our study often reported that services with a child welfare focus judged them negatively for the substance use of their family member, while failing to provide appropriate support and also relying upon them to adequately manage risks (Alexanderson & Näsman, 2017). Such ‘victim-blaming’ practices, which focus upon the caregiver's ‘failure to protect’ the child, have widely been criticized by research examining experiences of families affected by domestic violence (Archer-Kuhn & De Villiers, 2019; Singh, 2021). They have been found to focus upon the decisions of the caregiver, and typically criticize them for remaining within a relationship with a parent who presented a risk. Yet research demonstrates that domestic violence often continues after a victim/survivor leaves a violent relationship (Rathus et al., 2019) and a victim/survivor's decision to leave a violent relationship may increase rather than decrease risk. Similarly, within our study, caregivers who chose to end their relationship often continued to be impacted by the substance use of their family member and associated behavior due to continued contact with their children. Further, those that remained within relationships often engaged in a wide range of protective behaviors but felt unsupported in doing so. This included making effort to navigate risk within the family setting and seeking to shield the child's exposure to it. This points to a need for services responsible for safeguarding children to work with, and not against, caregivers of dependent aged children in their efforts to protect them from the impacts of parental substance use.

Our study found that many caregivers often perceived there was no support available for them, with services focused upon providing individual treatment to the family member who uses substances. Where support was available, this had often come after coping alone for many years, or only when a crisis point had been reached. The importance of working with the family is increasingly recognized and there are a growing number of interventions which involve family members (Rane et al., 2017; Templeton et al., 2010). These interventions are underpinned by assumption that the family may in some way be part of the problem, offer part of the solution, or, more recently, an acknowledgement that family members of people who use substances may benefit from treatment “in their own right” (Templeton et al., 2010). However, a recent systematic review found an absence of supportive interventions for the non-substance using caregiver in substance exposed families with dependent aged children (McGovern, Smart, et al., 2021).

The situations of the caregivers in our study were highly varied, from families consisting of biological parents within an intimate relationship to a grandparent or aunt providing care to a child due to their own child's/sibling's substance use. This variation in family composition greatly affected the nature of the support needs of the caregiver. That said, all of the caregivers discussed the difficulties they experienced in talking to the child about the substance use of the parent. Caregivers struggled with knowing when and how to raise the issue with children and often recounted problems arising from children learning this information from a third party or where the caregiver had felt forced to discuss the issue at a time or in a way with which they were not comfortable. Emotional support provided from a trusted caregiver to a child can greatly reduce the impact of adversity (Traub & Boynton-Jarrett, 2017) and improve the mental health outcomes of children (Jordan et al., 2019). These findings can therefore inform future intervention work in this area (see for example (UK Research and Innovation, 2023)), and further indicate that family-focused interventions which specifically support a caregiver in their role to care for children exposed to parental substance use may be beneficial. For example, support or resources for caregivers to talk with children about these issues may have positive outcomes for families and children, as well as offering vital guidance and reassurance to the caregiver to alleviate some of their cumulative stress and strain.

5. Strengths and limitations

This study highlights the often-overlooked impact of parental substance use on caregivers in substance exposed families, including those that find themselves in unplanned caregiving roles. Our sample was drawn from one region of England, and was comprised mostly of white caregivers, in heterosexual relationships, and so may not be generalizable to other contexts. However, we were able to capture diverse family compositions and caregiving arrangements. Whilst recruiting participants from support organizations enabled us to speak with caregivers around a sensitive topic, our findings are limited in that they did not reflect the experiences of those caregivers who were not in receipt of support; we were also unaware of the number of caregivers who were approached by gatekeepers but chose not to take part. When discussing sensitive issues, especially among families who may have experienced scrutiny and surveillance of their parenting skills, social desirability may have resulted in caregivers feeling unable to disclose the extent of the issues they were facing. Although not the direct aim of the research, some participants described how talking to a researcher who was impartial and had no prior knowledge of the family provided them with an opportunity to be heard without fear of any consequence of what they disclosed (aside from safeguarding concerns).

6. Conclusion

Our study has demonstrated that being a caregiver of a dependent aged child in substance exposed families compounds the harm caregivers experience, and results in cumulative stress and strain. Their responsibility to protect the child from direct and indirect exposure to parental substance use aggravates much of their experience and can also impact upon their ability to access and benefit from support.

Our findings suggest there is often a perceived lack of appropriate support specifically for caregivers, particularly considering the complex and compounding adversities they are facing, and the extra challenges they may face parenting children in substance exposed families. There is a need for services responsible for safeguarding children to take a trauma informed and whole family approach, and to work with, and not against, caregivers of dependent aged children in their efforts to protect them from the impact of parental substance use. Interventions which provide support or resources for caregivers to talk with children about the issues they are facing may be useful for caregivers, offering them vital support and reassurance to alleviate some of their cumulative stress and strain. Intervention development efforts should take this evidence from service users and stakeholders into account.

Ethics

This study was approved by the Faculty of Medical Sciences Research Ethics Committee (2108/11010/2021), part of Newcastle University's Research Ethics Committee. This committee contains members who are internal to the faculty. This study was reviewed by members of the committee, who must provide impartial advice and avoid significant conflicts of interests.

Funding

This project was funded by the Medical Research Council Public Health Intervention Development scheme. MR/V004034/1.

CRediT authorship contribution statement

Simon Barrett: Data curation, Formal analysis, Investigation, Methodology, Validation, Writing – original draft, Writing – review & editing. Deborah Smart: Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Validation, Writing – original draft, Writing – review & editing. Angela Bate: Writing – review & editing. Lisa Beresford: Conceptualization, Investigation, Writing – review & editing. Cath McEvoy-Carr: Writing – review & editing. Helen Thompson: Writing – review & editing. Eilish Gilvarry: Writing – review & editing. Vera Araujo-Soares: Writing – review & editing. Eileen Kaner: Writing – review & editing. Ruth McGovern: Conceptualization, Formal analysis, Funding acquisition, Supervision, Validation, Writing – original draft, Writing – review & editing.

Declaration of competing interest

The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Biographies

Dr Simon Barrett is an NIHR ARC Research Fellow at the Population Health Sciences Institute, Newcastle University. His interests centre upon how to best provide support for vulnerable families, and includes research into social prescribing, drug and alcohol recovery, parenting and attachment in the context of adverse childhood experiences, and the intergenerational transmission of parenting practices.

Deborah Smart is a Research Assistant at Newcastle University, who previously worked for 13 years as a practitioner in the voluntary sector, delivering and managing services for young carers. Her area of expertise is in research with children & families in particular the impact of parental risk factors such as mental illness or substance use upon children, including young carers.

Dr Angela Bate is a Health Economist and Health Services Researcher at Northumbria University, Newcastle, with a national and international reputation in the development and application of health economic methods in complex (public health) evaluations.

Lisa Beresford is a member of the SAFE SPACE advisory group, and contributed her experience to the original research ideas, the research design, and the analysis and interpretation of the findings.

Cath McEvoy-Carr is the Director of Children, Education, and Skills at Newcastle City Council, and has worked in social care in the Northeast of England for more than 30 years.

Helen Thompson is CEO of PROPS, a specialist service for people whose lives are affected by someone else's alcohol or drug use. She has worked for the charity for 16 years. She is an Accredited Practitioner, Trainer and Supervisor, and has delivered PROP's Community Reinforcement Approach family of interventions to other services.

Professor Eilish Gilvarry is the Clinical Director of Specialties and Forensic Services at Northumberland, Tyne & Wear NHS Foundation Trust, Consultant Psychiatrist in Addictions at Newcastle Addictions Service and Honorary Professor of Addiction Psychiatry at the University of Newcastle upon Tyne.

Professor Vera Araujo-Soares is Professor of Prevention at Heidelberg University. Her research aims to develop and evaluate interventions to change health-related behaviours and symptoms. This involves conducting formative research, understanding determinants of behavior and symptoms, the development of innovative blended interventions (integrating face-to-face contacts and technology), their evaluation and process evaluation. This research is theoretically grounded, applied, interdisciplinary and multi-methodological.

Professor Eileen Kaner is Professor of Public Health & Primary Care Research and the Director of the NIHR Applied Research Collaboration for the North East and North Cumbria. An applied behavioural scientist, her research programme aims to improve health and well-being across the life-course by promoting evidence-based interventions to reduce risks due to alcohol, substance use and linked mental health problems.

Dr Ruth McGovern is a Senior Lecturer in Public Health Research. Her research has a focus upon children, parents and families, and aims to improve their lives through evidenced-based decision making, policy and practice, and evaluating behavior change interventions to reduce alcohol and drug use.