PROTOCOL: The support needs of families living with parental mental illness: A qualitative systematic review

The problem, condition or issue

Parental mental illness (PMI) is an issue that has received increasing attention in the academic literature over the past 20 years. The specific challenges and risks associated with mental illness (MI) in a parent have come to prominence in part due to child protection cases, where a child in the care of a parent with a mental health problem was serious harmed or killed (Social Care Institute for Excellence [SCIE], 2011; WHSSB & EHSSB, 2008). The outcomes of which included the lack of investigation of parenting status of mental health patients, failings in the interagency collaboration allowing for abuse to be detected, and insufficient engagement with children in families with PMI (Duffy et al., 2016; Falkov et al., 2016). The aims of research in this area vary by methodology and participant group but overall seek to understand how best to support families, either by examining how practitioners work (Grant et al., 2018; Luckock et al., 2017) testing interventions (Acri & Hoagwood, 2015; Foster et al., 2016) or gathering experiential data (Backer et al., 2017; Jones et al., 2016; Marston et al., 2018). This systematic review is interested in those studies which sought the lived experience of families, through qualitative methods; an area not always sufficiently prioritised by funding groups or policymakers. As the need to consult those with direct lived experience is increasingly recognised this area of research has grown, yet there continues to be gaps in the evidence base. Previous research in this area has frequently taken an individual approach focused on the unwell parent, and less often children, and with few exceptions, neglected the experience of other family members (Ahlström et al., 2009; Ballal et al., 2018; Price-Robertson et al., 2015; SCIE, 2011). There has been even less research that has taken an integrative approach and sought the experience of the whole family affected by MI (Afzelius et al., 2018; Ahlström et al., 2009, Maybery et al., 2005) and yet families are crucial to understanding the experience of PMI, and for outcomes and recovery (Bland & Foster, 2012). The aim of the proposed review would be to evaluate the existing literature to provide evidence of the needs of families, to highlight any gaps and indicate future directions for research.

The prevalence of mental health problems in parents is difficult to estimate to exact figures due to underreporting and differences in recording and reporting measures. The mental health foundation attempts to estimate and report on prevalence, worldwide and in the United Kingdom (UK). For example, according to data collected within the last decade, worldwide, the rate of MI is thought to be around 10% of the population; this varies between countries with, for example, the UK at 14.5%, Ireland at 15.6% and the United States at 17.3% of the adult population (Mental Health Foundation, 2017). The most recent Adult Psychiatric Morbidity Survey was carried out in England and revealed that one in six people reported having a common mental health disorder at the time of the survey (i.e., depression or anxiety), and almost 50% of those surveyed reported symptoms of a mental health disorder at some point in their lifetime (McManus et al., 2016). Mental health problems can occur at any time over the life course, including while parenting, and in so doing impact the children of parents affected (Reupert & Maybery, 2016). Parenting can be a time of increased stress, and pregnancy and birth can be a trigger for mental health problems such as perinatal depression, anxiety and posttraumatic stress disorder (Howard et al., 2014).

Regarding the prevalence among parents, the Royal College of Psychiatrists report that that 68% of women and 57% of men with mental health problems are parents (2016). Furthermore, a national retrospective cohort study of UK children born between 1991 and 2015 provides perhaps the best estimates of children exposed to maternal mental illness (MMI) and indicates that overall, in the UK, the prevalence of MMI among these children was 23.2% (Abel et al., 2019). International figures provide a similar picture, with recent estimates suggesting that worldwide between 15% and 23% of children live with a parent with MI (Pierce et al., 2020). Similarly in a large-scale study of young people and parents in Northern Ireland (NI) it was found that 22% of parents reported a previous diagnosis of a mental health disorder and that children of parents experiencing MI were twice as likely to themselves report symptoms such as anxiety or depression (Bunting et al., 2020). As can be seen there are different ways of reporting, however, the overall message of these figures is that many individuals are parenting with mental health issues, and many children are living in families where MI may impact their wellbeing and their outcomes.

It is well established in the literature that there are links between PMI and poor outcomes in children (Beardslee et al., 2012; Christiansen et al., 2015; Henshaw et al., 2011). The effects of PMI on children may be direct, such as in the case of predisposition to MI and behavioural problems in adolescence and adulthood (Melchior & van der Waerden, 2016). Indirect effects may include exposure to factors such as socioeconomic deprivation, relationship difficulties, domestic abuse, and co-morbidities such as substance abuse (Fuller-Thomson et al., 2019). In cases where children have died or been seriously injured, the investigations have found that PMI was a significant factor in the outcome (Duffy et al., 2016). While incidence of serious harm or death may be infrequent, children living with PMI may experience a range of adversities, which can lead to poorer educational attainment than their peers, behavioural and social difficulties, the strain of additional caring responsibilities and an increased risk of MI themselves (Davidson et al., 2012). However, the evidence suggests that there is not a linear causal relationship in the intergenerational transmission of MI (Landstedt & Almquist, 2019). There is evidence that around a third of children who grow up with a parent experiencing mental health difficulties do not experience negative outcomes in adulthood (Darlington et al., 2005). Not all families experiencing PMI will require intervention from services, and those that do are unlikely to universally conform to a particular set of needs or level of risk or respond to a specific intervention.

Despite the apparent public health concern created by PMI, too little research has been carried out that has explored the experience of the families affected and there have been calls for further research to be conducted especially with children (Cooklin, 2009; Reupert & Maybery, 2016). Some existing literature addressing children's perspectives explores the experience of young carers. While children may care for their parents due to a range of disabilities, there has been previous interest in those caring for a parent with MI (Aldridge, 2006; Aldridge & Becker, 2003; Cooklin, 2009; Obidina, 2010; SCIE, 2011). Aldridge (2006, p. 86) discussed the needs and experiences of children caring for a mentally ill parent and argued that while ‘children's development and childhood experience can be adversely affected when caring becomes long term and disproportionate’ young carers are not at inevitable risk of harm and that recognition of their role and contribution is highly valued.

As noted, there is a lack of research that deals with the partner or well parent experience and there is a significant gender imbalance with parenting often being conflated with mothering and a less research attending to MI in fathers (Fisher, 2016; Price-Robertson et al., 2015). In general, there are fewer male voices in the qualitative research in this area either as the well or unwell parent although this is beginning to change. Recent research has begun to consider the perinatal mental health of fathers and the impact that this has on maternal mental health, infant mental health, and family wellbeing (Shorey & Chan, 2020). A small number of studies to date have taken a multiple-perspective approach, by including the experience of parents and children and more rarely partner or whole families (Afzelius et al., 2018; Ahlström et al., 2009; Maybery et al., 2005). This type of approach is more inclusive, providing evidence from marginalised family members on the effects of PMI and additionally highlighting systemic effects not detectable in individual accounts. Similarly, a systematic review of the literature which incorporated a synthesis could help illustrate the experience of multiple members of the families affected, those previously given less attention and provide insight into the family as a unit. The synthesised data on multiple family members could provide additional support and evidence for those planning public services directed towards families with a mentally ill parent.

Description of the intervention

This qualitative systematic review will not be examining an intervention. The experiential data on the phenomena of interest becomes the outcome, in the absence of an intervention or experiment.

How the intervention might work

As above.

Why it is important to do this review

Despite the potential negative impact on outcomes for children there continues to be a lack of understanding of the experience of families, either in terms of gathering sufficient evidence from individual members or in providing integrated experiential accounts (SCIE, 2011). Internationally there has been a drive towards practice recommendations which support a whole family approach (Falkov, 1998, 2012; Goodyear et al., 2017; Reupert & Maybery, 2016; SCIE, 2011). Standards of practice that, at a minimum require adult mental health professionals to ask about parental status routinely, early intervention to promote family functioning, actively supporting children, working with parenting issues and the importance of interagency communication and collaboration (Davidson et al., 2012; Duffy et al., 2016). However, while countries all over the world are attempting to improve the approach to working with PMI, there is an acknowledged variability in the rate at which practice is changing (Falkov et al., 2016).

In July 2009, the Social Care Institute for Excellence published the ‘Think child, think parent, think family’ guide to help improve the response of services to parents with MI and their families in the UK (Diggns, 2011). The ‘Think family’ recommendations emphasised a ‘whole family’ approach underpinned by the Family Model, developed by Dr Adrian Falkov (1998, 2012). These recommendations have informed developments in family focused practice (FFP) within the UK for the last decade. Recently in NI, a large-scale mixed methods study examined FFP from the perspective of professionals and parents who have MI (Grant et al., 2018). Findings suggested that while Think Family NI is a recognised initiative within some parts of the Health and Social Care system, levels of knowledge and understanding of FFP are variable. The report suggested that further research should be commissioned to ‘assist providers in better understanding how many families require help, what types of help are most effective for whom and in what circumstances, and to trial new interventions.’ (Grant et al., 2018). It is essential, of course, to conduct further primary studies with families; however, it is also important to synthesise the evidence which already exists to inform the direction of any planned research. To gain new understanding of the needs of families, a systematic review of the literature which incorporated a synthesis could provide unique insights and help illustrate the experience of multiple members of the families affected. The synthesised data on multiple family members could provide additional support and evidence for those planning public services directed towards families with a mentally ill parent.

As part of the study conducted by Grant et al. (2018), a systematic review was also conducted, which reviewed quantitative and qualitative studies of interventions with families experiencing MI or substance misuse in a parent. The research reviewed had to include interventions that were ‘family focused’, for example, that addressed the needs of at least a parent and child where a parent was experiencing MI or substance abuse. This review uncovered a range of interventions being used with families and reports of improvements because of FFP. The review provided some evidence for the perceived efficacy of FFP though no comparison with other interventions was made. In addition, due to the scope of this review it did not include qualitative research with parents exploring their perceptions of living with mental ill health or engaging with interventions, which might have provided further insight. Qualitative approaches, offer excellent ways to investigate families, allow a depth of understanding from an insider viewpoint and give voice to marginalised family members. It is nevertheless difficult to generalise from these studies due to the low levels of diversity in the sample and lack of representation of difficult to reach parents or those who have not accessed treatment. Consequently, public and social health organisations are making increasing use of qualitative systematic reviews to inform policy and practice, where data from multiple small-scale studies can be synthesised increasing the strength of the evidence. (Gopalakrishnan & Ganeshkumar, 2013; Mills et al., 2005).

The proposed review would aim to provide a synthesis of existing qualitative research on PMI, which as has been noted is more frequently conducted with individual parents or children and rarely partners, rather than with family groups. Important insights have been gained from the existing research. For example, research with parents experiencing MI has uncovered some of the issues that this group are most concerned about, such as fears of losing their parenting responsibility, the importance their parenting role played in recovery and the need for professionals to acknowledge their parenting status (Jones et al., 2016; Marston et al., 2018; Van der Ende et al., 2016). Existing systematic reviews in this area include those that have synthesised the children's experiences as captured by qualitative research, for example, a meta-synthesis by Dam and Hall (2016) which provided useful insight from 22 research studies with children of mentally ill parents. It highlighted the unpredictability of daily life faced by children living with a parent with MI and uncovered the shame and stigma children felt because of their parent's illness. It also suggested areas of focus for interventions such as the provision of information and education regarding PMI (Dam & Hall, 2016). These are important issues for policymakers and service providers to consider when assessing the needs and developing services for children. The proposed review would provide similarly useful information regarding not only children, but the whole family when there is PMI.

Reupert and Maybery (2016) provided an overview of the research field with a systematic review that took a multiple perspective approach and reviewed literature on the prevalence of MI in parents, the risk to children, the needs of children and parents and the experience of interventions. This review provided a comprehensive overview of the literature regarding families where a parent has a MI, from a range of viewpoints and in so doing uncovered a significant need for a ‘paradigm shift’ in the mental health services to meet families’ needs. Reupert and Maybery (2016) point out that their review was purposefully selective in that it sought to present a broad view of the research base illustrating the type and quality of research in this area. It provided not only an insight into the field but also uncovered the ways in which the problem is conceptualised, experienced and in some cases treated and at a level of complexity that a single perspective review would not have achieved. This proposed review would aim to discover and synthesise the qualitative data from families with experience of PMI to hopefully provide much needed information about their lived experiences, and the issues and problems that are most significant to this vulnerable group.

Taking a multiple perspective account of an issue by necessity increases the complexity of the data uncovered. In terms of the specific issue of PMI an approach that considers the whole family is one that finds agreement within some of the relevant theoretical perspectives such as family systems theory (FST). Based on the findings from previous research in this area, it is clear that multiple members of families where there is PMI experience adversity, including socioeconomic difficulties, decreased wellbeing and implications for children's welfare and family relationships and unity (Gladstone et al., 2006). FST understands the family to be an emotionally connected unit, likely to be disrupted by the mental health difficulties of an individual within the unit (Broderick, 1993). In FST it is emphasised that each part of the unit affects the functioning of the whole and that problems and issues exist within the context of the relationships (Becvar & Becvar, 2002). Family dynamics can have a significant impact on functioning and coping. Given the interconnectedness of the experiences within families it is significant to policy and practice that we gather as full a picture as possible which takes account of the nature, complexity and impact of these systems.

There have not been any literature reviews conducted that have sought to integrate and systematically review research regarding the experiences of all family members affected by PMI. Studies carried out with whole families have the potential to provide a complete picture of the impact and potential risks. Therefore, by employing a thematic meta-synthesis of research which gathered the experience of parents, children, partners, or whole families the aim would be to generate new insights and understandings of the needs of families.

Criteria for considering studies for this review

Search methods for identification of studies

The strategy used was developed in consultation with a librarian and resulted in the search string; Mental illness OR Mental health OR Depression OR Anxiety OR Bipolar OR Schizophrenia AND Parental OR Parent OR Maternal OR Paternal OR Family OR COPMI AND Qualitative OR experience*.

Data collection and analysis

Sensitivity analysis