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Mothering with a major mental Illness: examining emerging themes from the literature

This literature review by Diana Skibniewski-Woods examines the emerging themes found on mothering with a major illness, and is presented in relation to community practice.

What factors influence mothers in the UK and Ireland to wean their infants before six months of age?

Diana Skibniewski-Woods Flying Start health visitor
RGN, RSCN, SCPHN- health visiting, MSc

e-mail: diana.skibniewski-woods@wales.nhs.uk
 

Key points:

  • Acknowledge the value of the mothering role as a motivating factor.
  • Acknowledge the client’s own concerns for their children.
  • Acknowledge parental fear of child protection services.
  • Always ask about maternal mental health functioning.
  • Consider the importance of maternal reflective functioning when making assessments of maternal functioning.
  • Consider recovery-orientated approaches that can build a life beyond illness.

Abstract

This paper examines the emerging themes from a literature review on mothering with a major illness. Emerging themes of: shame, guilt and social isolation; trauma; concern about the effects upon the children; fear of child protection and removal of children; infant experience and maternal reflective functioning; valuing being a parent; and identity outside mental illness are identified. The emerging themes are presented in relation to community practice in the context of the wider literature with reference to policy and practice and education.  

Key Words: major mental illness, motherhood, trauma, relationships, identity


Introduction

Childbirth is associated with a risk to women’s mental health, with increased depressive illness and increased risk of recurrence of affective disorders and deterioration of existing severe mental illness (Joint Commissioning Panel for Mental Health, 2012). It is estimated that 50-66% of parents who have a severe and enduring mental illness, including schizophrenia, personality disorders and bipolar disease, have one or more children under 18 years old living at home. This amounts to about 17,000 children in the UK (Mental Health Foundation, 2015). National Institute for Clinical Excellence (NICE, 2014) finds that the relationship between the mother and infant in the first year after birth are significant for maternal mental health and can influence infant cognitive and emotional development.

This aim of this paper is to examine the emerging themes from a literature review, which explored the empirical literature surrounding mothers with mental health problems. It specifically aims to explore how the literature can inform practice about the health needs of mothers with major mental illness and their children. It seeks to define areas of convergence of theory and the research base that underpins them, and seeks explanation based on the experiences of people being studied (Noblit & Hare, 1988). The focus is on areas, which are relevant to Specialist Community Public Health Nurses (SCPHN-health visiting) practice, and aims to contribute to the theoretical understanding of practitioners.


Method

Electronic databases were searched, including CINAHL, Medline, Ovid, NHS e-library and general internet search engines. Inclusive search terms were used such as ‘mothers and mental illness’. This produced 25,200 results that were refined initially by date (2011 onwards) and language (written in English). The titles were scanned for relevance and abstracts were examined, secondary references were followed up and examined for significance to the topic of mothering with a major mental illness.

Secondary searches were carried out to refine identified themes by the use of key words including: bipolar disorder (BD), schizophrenia, affect regulation and personality disorder. Papers that were considered less relevant were edited out of the review to allow focus on the themes that had emerged as significant.

Sixteen studies were selected for detailed critiquing. The critiquing frameworks used were Ryan, Coughlan & Cronin, (2007a) and Ryan, Coughlan & Cronin (2007b). These frameworks were used consistently to aid appraisal of the strengths and limitations of the research and included examination of the purpose of the study. The theoretical frameworks used: methods and philosophical underpinnings, ethical considerations, data analysis and rigour. Restriction of type of research was topical, not methodological, and was broadened to include older children when studies were found to be relevant.

Emerging themes were identified by reviewing the papers critiqued in the initial literature review for clustering and convergence of theory, based on the people being studied, identifying themes that addressed the research question of how the literature can inform practice about the health needs of mothers with major mental illness and their children, and to indicate gaps in the current literature base, which could indicate areas for further study. These were then analysed in narrative form, in the context of the wider literature with reference to policy and practice and education (Aveyard, 2014).


Results

The emerging themes identified were:

  • Shame, guilt and social isolation.
  • Trauma.
  • Concern about the effects upon the children.
  • Fear of child protection and removal of children.
  • Infant experience and maternal reflective functioning.
  • Valuing being a parent and identity outside mental illness.

Shame, guilt and social isolation.

Feelings of guilt and shame are identified by adults and children in the literature (Davies & Allen, 2005; Dolman et al, 2013; Montgomery et al, 2011; Wilson & Crowe, 2008;). Dolman et al (2013) record mothers expressing feelings of shame for having thoughts of hurting their children, although they felt love for them. Shame is related to feelings of worthlessness, humiliation and inadequacy, and is inextricably linked to self-esteem and mental health (Potter-Efron & Potter- Efron, 1989).

Hill (2015) differentiates shame from guilt. Shame is ‘intensely visceral and painful, all-encompassing and disorganising’ (p.184), whereas guilt is more to do with reflective processes and moves us towards reparation with another person. Mothers reported feeling guilty that they were letting their children down and felt that they were not fulfilling the imagined mother that they had wanted to be (Dolman et al, 2013). These thoughts are essentially reflective in nature.

Hill (2015) proposes that tolerance to shame is linked with resilience and is a vital part of the nurturing relationship that feelings of shame are repaired. However, the repair process is based on the caretakers’ ability to regulate their own shame. Conditions such as Borderline Personality Disorder (BPD) are thought to engender particular sensitivity to potentially invalidating cues, causing problematic arousal of anxiety or anger (Swales & Heard, 2009).  

Practitioners working with families where parents have mental ill health need to be sensitive to feelings of shame and guilt, which can make demands upon practitioners and require advanced interpersonal skills. For practitioners, understanding that our relational abilities are an adaptation to our previous environments can help generate self-compassion and reduction of shame; this can begin with making the implicit explicit and encouraging reflective functioning as a healing process (Hill, 2015). This fits in with the current dialectical approaches, which encourage comprehensive acceptance of what has and is occurring, based on the assumption that suffering arises from non-acceptance (Swales & Heard, 2009).

 

Trauma

Trauma is an emerging theme from the research (Burtchen et al, 2013; Elliot et al, 2014; Montgomery et al, 2011; Mullick et al, 2001). It is considered to account for one of the major burdens of disease associated with mental disorders (Van der Kolk, McFarlane & Weisaeth, 2007). Van der Kolk et al (2007) explains that traumatised patients experience current stress with the emotional intensity of past experiences, leading to repeated hyperarousal and/or emotional numbing. The methods used to regain control are frequently self-destructive and include substance misuse, self-harm, and other addictive behaviours (Van der Kolk et al, 2007). Elliot et al (2014) found that mothers with BPD reported significantly higher levels of childhood trauma than control mothers. Trauma was categorised into physical neglect, emotional abuse, emotional neglect and sexual abuse.

The effect of trauma can be corrosive especially when it occurs in childhood, as essential developmental stages may be missed – our ability to form collaborative relationships with others is formed in childhood. Van der Kolk et al (2007) suggest that a trauma response can be to develop oversensitivity to other people’s needs, which can be used as a self-protective strategy. Trauma that is perceived to be life threatening may bypass the neo-cortex rational part of the brain and go straight to the fight or flight mechanism in the amygdala, this is thought to lay down behavioural pathways that influence later coping abilities (Karr-Morse & Wiley, 1997; Schore, 2003).

Schore (2003) records that neuroimaging has recorded a subcortical pathway to ‘unseen fear’ from the experience driven over pruning of the brain. The overactive stress response system in the brain is felt to underlie many disorders including depression, anxiety, phobias and obsessions (Sunderland, 2007). The underlying state is felt to be hyper-arousal, affecting major body systems – heart rate rises, blood pressure rises, and there are digestion alterations, as blood supply is diverted to fight or flight systems (Cairns, 2014). Sleeping and eating can be affected, concentration and attention can be difficult. The focus on threat affects relationship-making abilities and judgments of others’ intentions (Cairns, 2014).

Childhood trauma is found to affect reflective capacity in mothers who are struggling to identify infant relational cues and interpret the emotional needs of their infants (Elliot et al, 2014).

 

Concern about the effects on the children

Parental concern for their children’s wellbeing and the burden of responsibility being placed on children was identified by several studies (Herbert et al, 2013; Razzino et al, 2004; Wilson & Crowe, 2008). The Ofsted (2013) report What about the children? also raised the issue as a concern and identified the need for children who are undertaking inappropriate caring responsibilities for parents or siblings to be identified and offered the appropriate support. This requires effective joint working by agencies and professionals. Ofsted (2013) identified that questions regarding children were not consistently asked by adult mental health services, and families needed safety plans that included awareness of when to seek alternative carers for vulnerable children.

Van Loon et al (2014) identify the quality of parent-child interaction as significant where the parent has a mental illness. Parents with mental ill health were identified as having less awareness of children’s whereabouts and there was a connection between lack of parental support and externalising behaviours such as aggression and rule breaking (Van Loon et al, 2014). Children were also felt to be more likely to experience negative emotions, which could lead to internalising behaviours such as depression and anxiety (Van Loon et al, 2014).

An estimated 17,000 or more children are caring for a parent with a severe mental illness, with the onset of the caring role being between 8 and 10 years of age (McAndrew, Warne, Fallon & Moran, 2012). A survey and report undertaken by Young Carers International (Sempik & Becker, 2013) found that 29% reported their own physical health was ‘just OK’ and 38% reported that they had mental health problems of their own. One child said: ‘I was a carer before I….even knew what they were’ (Sempik & Becker, 2013, p.6). The report recommends that young carers should have regular assessments of their needs, and that social and health care practitioners need to develop a greater awareness of the impact of parental ill health on children. However, 67% of the children surveyed had told no-one that they were a carer. The reasons given included a desire to keep it private, fear of negative reactions, embarrassment and not knowing who to tell (Sempik & Becker, 2013). When children did receive appropriate support, benefits included: being more confident, having more friends, attending school more often and doing better at school (Sempik & Becker, 2013).

Practitioners can help parents to understand the experiences of their children by encouraging reflection and asking questions, developing an understanding of the potential for children to increase problematic attachment-seeking behaviours because of concerns and worry about family members or themselves (Pynoos, Steinberg & Goenjian, 2007). Practitioners also need to recognise parents’ needs for affirmation and the giving of praise (Dolman et al, 2013). The cascade effect of giving praise is a recognised approach in many parenting programmes including The Incredible Years Programme (Webster-Stratton, 2006).

 

Fear of child protection and removal of children

Parental concern around child protection and losing custody of their children was identified in several papers (Davies & Allen, 2005; Dolman et al, 2013; Khalifeh et al, 2009; Montgomery et al, 2011). This may be a legitimate concern for some parents as parental mental ill health is identified within the ‘Trilogy of Risk’ for child protection agencies, the other parts of the trilogy being substance and alcohol misuse and domestic abuse (Ofsted, 2013). The imperative for practitioners to make the prioritisation of the children’s needs the paramount consideration (All Wales Child Protection Procedures, 2008; Children Act, 1989), challenges practitioners to make detailed and accurate assessments of children’s needs.

Crittenden (2012) comments that it is rare that parental mental illness is included as a form of child maltreatment and can be considered as explanation for extenuating circumstances: professionals who are involved in adult mental health services need to recognise children’s needs. Parental dispositional state is viewed as crucial to children’s physical, emotional and psychological safety; the ability to understand how parents who are experiencing mental illness organise their parental behaviour is important to the decision of what preventative and supportive interventions are appropriate (Crittenden, 2012).

Crittenden (2012) recommends assessment of family functioning under five categories: independent and adequate; vulnerable to crisis; restorable; supportable; and inadequate, where no services would be sufficient to support the basic needs of the children.

Low intensity psycho-social interventions may include Cognitive Behaviour Therapy (CBT) individual or group, mindfulness-based cognitive therapy, and counselling. High intensity interventions might include Inter Personal Therapy (IPT) or psychodynamic psychotherapy (NICE, 2009). The emergence of dialectical behaviour therapies have urged the joining of cognitive approaches with Zen practices of acceptance: behavioural procedures teach thinking skills and Zen practices teach the art of observing urges without acting on them (Swales & Heard, 2009). The availability of services is recognised to be an issue; Clark (2011) details the UK government initiative to improve access to psychological therapies.

Khalifeh et al (2009) cite fear of losing custody as a major factor in parents not seeking help with children during mental health crisis. NICE (2009) emphasises the importance of practitioners building trusting relationships, and working in an open, non-judgmental way. However Dolman et al (2013) cite fear of custody loss as a major impediment to the establishment of collaborative relationships with health practitioners. Khalifeh et al (2009) suggest that simple interventions such as access to childcare can be effective in reducing parental distress and improve outcomes for children. They suggest that this type of intervention is a better alternative to implementing child protection legislation. Levy and Orlans (1998) describe the parental team, with professionals having a role in assisting and empowering parenting, providing crucial support and a united front for the needs of the children.

High levels of anxiety have been identified in practitioners working with mothers with severe mental illness, indicating a need for higher levels of support, supervision and specialist training to enable staff to work effectively (Dolman et al, 2013).

 

Infant experience and maternal reflective functioning

Relationships, attachment, attunement and infant experience were identified as prominent themes (Apter-Levy et al, 2013; Burtchen et al, 2013; Elliot et al, 2014; Herbert et al, 2013; Hobson et al, 2009; Khalifeh et al, 2009; Kim et al, 2012; Stein et al, 2010; White et al, 2011). Using a transactional model of understanding infant experience as a combination of genetic and environmental influences, Schore (2001) proposes that the environmental experience of the child either enables or constrains the structure and function of the developing brain. The importance of early infant and child experience has been recognised and has led to the development of theory by researchers such as Bowlby (1969, 1979, 2005), Brazelton et al (1974), Salter Ainsworth et al (1978), and neuroscientists such as Schore (2001; 2003) and has created the potential for understanding the emotional life of infants and children in a biological and social way (Gerhardt, 2008).

The challenge for practitioners working with mothers with severe mental illness is the knowledge that these women may not be psychologically available to their infants when they are very ill (Pawlby & Fernyhough, 2009). The symptoms of illness may include disordered speech or behaviour, flat or exaggerated effect, preoccupation, disinhibition, grandiosity, ritualistic behaviour, irritability or aggression, all of which can cause difficulty for the mother in relating with her baby (Pawlby & Fernyhough, 2009).

Elliot et al (2014) find that, in this population, mother-infant interactions can be characterised by high levels of stress, intrusive behaviours, hostility or avoidance and inconsistency. The mother’s internal world influences the way she is able to interact with her baby and, because the infant brain is developing as a result of early interaction, the internal working model they are building is constructing a sense of self that is potentially life long (Barlow & Svanberg, 2009).

Attachment theory suggests that securely attached infants seek comfort when distressed and recover from an aroused disorganised state to an organised calm state when comforted (Barlow & Svanberg, 2009; Bowlby, 1969, 1979, 2005). If mothers are withdrawn, finding it difficult to smile and talk with their babies or intrusive or ill timed and over-stimulating, babies’ responses may be to become passive and avoidant or reactive, crying excessively (Pawlby & Fernyhough, 2009).

Insecurely attached infants are thought to learn to down-regulate to inhibit expression of effect or distress in avoidant type A attachment and up-regulate, becoming highly vigilant to guard against abandonment or separation, in ambivalent type C attachment strategy (Barlow & Svanberg, 2009; Geddes, 2012; Sunderland, 2007). Howe (2011, p.98) describes ‘the goal of attachment behaviour’ as the ability to ‘recover proximity with the caregiver’. The result of misattunement is a ‘dyssynchrony’ of ‘distress’ (Crittenden, 2012). However, Crittenden (2012) argues that the attachment strategy is the child’s contribution to their own survival and that children protect their parents’ ability to be parents.

Svanberg and Barlow (2009) contend that the development of infant–centered services are inevitable given the progress in the understanding of infant mental health, but this challenges practitioners to develop the required skills. The support needed by mothers with severe mental illness is, in some ways, no different to those without such problems, but their difficulties may be more intensive if they are unwell, in particular with helping their infants regulate emotion, and require prioritisation by practitioners and effective inter-disciplinary working practices (Pawlby & Fenyhough, 2009).

Schore (2003) describes the infants’ response to lack of emotional containment at times of distress as the hyper-arousal of extreme distress, which will turn into dissociation and withdrawal from the world around, a parasympathetic dominant state that demonstrates the potential for inter-generational transmission of trauma. Howe (2011) proposes that high reflective function can override vulnerability and allow the caregiver to connect with the child’s need for safety and comfort, and need for regulation, allowing the child to develop secure attachments. Fonagy (2009) found that if the caregiver could develop the capacity to reflect on mental experience by consistently labeling infant mental states, to encourage ownership of inner experiences, the cycle of intergenerational replication could be interrupted.

Slade (2005) presents the protective quality of reflective functioning as due to the parent’s capacity to hold the child’s mental state in mind. Fonagy et al, (1998) connect higher parental scores for reflective functioning with a higher likelihood that children will be securely attached.

The risks to the child of failing to develop reflective functioning are described as significant by Fonagy (2009) if the child is unable to distinguish between attributing the caregiver’s rejecting behaviour to the caregiver’s emotional state of depression rather than a fault in themselves as bad or deserving of the treatment, it may result in life long emotional injury. Hart (2008) explains the development of narrative ability, the ability to verbalise experiences, as helping the organisation of experiences, and that ability to integrate various memory structures is what integrates the personality.

The need for parenting assessments to include information about caregivers’ capacity for reflective functioning is recognised (Fonagy et al 1998). Many parenting intervention strategies incorporate material on reflective functioning, including The Incredible Years Programme (Webster-Stratton, 2006) adopted by the Welsh Government Flying Start Programme.

 

Valuing being a parent and identity outside mental illness

Many parents placed value on being a parent. Having an identity outside of mental illness was recognised as being important in several studies (Dolman et al, 2013; Duffy, 1985; Wilson & Crowe, 2008). Women who are living with a severe mental illness may find motherhood a normalising life experience, which creates meaning and a role outside of illness (Nicholson, Sweeney & Geller, 1998). Benner (1984) describes illnesses as ‘unchartered experiences’ (p.89) and one that can be isolating. However, humans are essentially adaptive and have the potential to change and adjust to different life events (Crittenden, 2012). Motherhood is described as an identity, an experience and an institution (Horne, Corr & Earle, 2005) that is known about and recognised by society.  Childbirth and being a mother carries an expectation of happiness (Joint Commissioning Panel for Mental Health, 2012).

Severe mental illness may be interpreted and experienced as stigmatising, hopeless and damaging to self-esteem. Yanos, Roe and Lysaker (2010) suggest that internalised stigma creates disempowering narratives, which can lead to a vicious cycle of symptom severity. Becoming a mother may provide a healthy life focus, which creates an alternative self-image; mothers report ‘pride’ in being a mother (Dolman et al, 2013). Children are able to provide meaning and focus outside of mental illness and a sense of normality, giving a purpose for living and opportunity for meaningful loving relationships (Dolman et al, 2013).

The role of practitioners is a mediating one, between the ‘mother’ identity and the ‘mental illness’ identity (Davies & Allen, 2005), allowing the integration of the person in an effective way, that supports parenting capacity, whilst recognising the importance of supporting mental health needs.


Conclusions and recommendations for further study

This literature review aimed to use a systematic approach to explore the empirical literature surrounding mothering with a major mental illness. A criticism of this review could be that the research question has been too broad. However, the broadness of the question has value in the development of emerging practice based themes about the needs of mothers with major mental illness and their children, which have then been able to be examined in more detail for validity.

The literature reviewed included a range of research approaches including systematic reviews, cohort studies, qualitative and quantitative methodology. The qualitative component is significant due to the imperative for in-depth understanding of human experience (Parahoo, 2006). The emergence of neuro-biological perspectives has enabled the development of the understanding of mental illness, which integrates psychology and biology (Hill, 2015). There is an imperative to consider feminist methodology for research on mothering with a major mental illness; Belenky, Clinchy, Goldberger and Tarule (1997) consider that to find an authentic voice, women need to create their own frame in order to integrate knowledge that is personal and intuitive with knowledge learned from others.

Montgomery et al (2011) seek to encourage practitioners to use the value that mothers place on the maternal role as motivation for these women to develop resilience for themselves and their children. The appreciation by practitioners of mothers’ motivation and imperative to provide for their children is important – it gives practitioners understanding of client perspective. It is important for practitioners to be able to acknowledge parents’ concern for their children, as this will enable joint working practices. Conversely, the recognition of fear of child protection services (Davies & Allen, 2005; Dolman et al, 2013; Khalifeh et al, 2009; Montgomery et al, 2011) creates an understanding in practitioners about the barriers that they may encounter when offering services to mothers and children.

Health visiting practitioners need to ensure that women are asked about their current mental health problems (Joint Commissioning Panel for Mental Health, 2012). The significance of the development of reflective function (Kalifeh et al, 2009; Mullick et al, 2001) is of vital importance to practitioners who are undertaking assessment, as it is proposed that high reflective functioning can facilitate connectedness between caregiver and child, thus protecting the child (Howe, 2011).

Health visitors are acknowledged as being effective in the prevention and treatment of postnatal depression, but require additional training in active listening skills and cognitive support measures (Joint Commissioning Panel for Mental Health, 2012). The need for recovery-orientated approaches, which do not necessarily require ‘clinical recovery’, but rather the facilitation of ‘building a life beyond illness’ is recognised (Royal College of Psychiatrists, 2009, p.11). This type of socially inclusive imperative values the development of a sense of personal control by involving self-management and self-determination to have a fulfilled life, thus engendering ‘hope’ (Royal College of Psychiatrists, 2009). The implication for practitioners is the critical importance of understanding how central motherhood is for women with severe mental illness (Dolman et al, 2013).


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