This qualitative study aimed to explore how having a child with a functionally univentricular heart (FUH) affected mothers’ experiences of their parental role and identity. Eight mothers whose children had undergone the Fontan surgical procedure were recruited via social media. Interviews were completed using Microsoft Teams and audio-recorded, then transcribed and analysed using Interpretative Phenomenological Analysis. Four themes were identified: (1) being a “heart mum”, (2) managing competing roles: “you have to wear lots of different hats all at the same time”, with subthemes (a) promoting normality vs. protecting the child and (b) mothering vs. nursing roles, (3) loss and regaining of identity and (4) relinquishing control and letting go of caring roles. Parenting children and young people (CYP) with FUH presented significant challenges to mothers’ parental role and identity, which they managed in various ways. There are implications for health services to support mothers with their psychological wellbeing, managing nursing roles and their child’s transition to adulthood.
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Congenital heart disease (CHD) has an estimated global prevalence of 1% (Zimmerman et al., 2020). CHD severity ranges from mild to severe, so treatment and prognosis vary. Indeed, a functionally univentricular heart (FUH) means part of the heart is unformed and several life-saving surgeries are required, culminating with the Fontan surgery at approximately age four. These children and young people (CYP) require lifelong care and are more likely to need further medication and interventions, such as catheter procedures or tube feeding (van Der Linde et al., 2011). Nonetheless, all treatment for FUH remains palliative, and only 59.8% of those with FUH survive to age five (Best & Rankin, 2016). The complexities of FUH mean that parents of these CYP face additional stressors and caring responsibilities, along with increased risk that their child may not survive.
Reviews of literature suggest that CYP with CHD and their families are vulnerable to distress (Abda et al., 2019; Soulvie et al., 2012; Wei et al., 2015). Parents of CYP with CHD are more likely to experience anxiety and depression (Alkan et al., 2017; Lawoko & Soares, 2002) and post-traumatic stress (Kolaitis et al., 2017; Woolf‐King et al., 2017) than parents of healthy CYP. These parents describe isolation, guilt and fear throughout their child’s life (Lumsden et al., 2020). Findings are consistent across cultures (Im et al., 2018; Nakazuru et al., 2017) and may be explained by the additional challenges faced, such as making important medical decisions (Rempel et al., 2004) or adapting to necessary financial or lifestyle changes (Connor et al., 2010). Indeed, stages in which such challenges are most acute are associated with increased distress, including diagnosis (Bratt et al., 2019), hospitalisation (Lisanti et al., 2017; Simeone et al., 2018) and surgery (Harvey et al., 2013; Wei et al., 2016). Consequently, several countries, including the UK (NHS England, 2016) and Australia (Department of Health, 2019), recommend that psychological support is available at any stage of care.
Whilst some studies have found no difference in levels of distress between parents of CYP with CHD and normative samples (Fischer et al., 2012; Spijkerboer et al., 2007; Vrijmoet-Wiersma et al., 2009) the authors acknowledged that results may have been affected by difficulties with measuring distress or lack of comparison groups. Nonetheless, the findings may simply suggest that some parents psychologically adapt to their child’s condition. For example, parents of CYP with FUH interviewed by Lumsden et al. (2020) reported establishing a sense of normality once they had adjusted to changes that a FUH brought to their parental role.
A person’s understanding of, and adjustment to, their parental role and identity can affect their psychological wellbeing and, in turn, that of their child (Cast, 2004; Fadjukoff et al., 2016). Identity is considered a set of meanings, according to the roles a person adopts and groups they belong to, that shape understanding of who they are (Stets & Serpe, 2013). Individuals are thought to have multiple identities (e.g., partner, worker), organised into a hierarchy. Conversely, roles are behaviours or responsibilities that inform an identity (Stryker & Burke, 2000). Although experiences differ, for example between genders (Katz-Wise et al., 2010), parental identity is usually prioritised and includes roles such as nurturer, protector and disciplinarian (Ihinger-Tallman et al., 1995). Enacting these roles can verify an individual’s appraisal of their parental identity, promoting psychological wellbeing. However, many parents report feeling inadequate in their perceived roles or challenged by competing demands of other identities, which can cause distress (de Montigny & Lacharité, 2005; Petch & Halford, 2008).
The negotiation of parental role and identity is also affected by CYP’s wellbeing. Systematic literature reviews by Shudy et al. (2006) and Abela et al. (2020) found parental role, identity and wellbeing were acutely challenged when CYP were critically ill. Similar findings are reported among parents of CYP with chronic illnesses (Kirk et al., 2005; McKenzie & Curle, 2012; Nicholas, 2017; Young et al., 2002) and disabilities (Pertriwskyj et al., 2016). In quantitative research, Diffin et al. (2016) and Lisanti et al. (2021) also found parental role alteration in intensive care environments (e.g., being unable to hold their child) significantly increased distress among parents of CYP with CHD.
Qualitative research has not explored identity among parents of CYP with CHD but has offered some consideration of parental roles relative to wider experiences. For example, distress has been associated with feeling stripped of parental roles during hospitalisation (Simeone et al., 2018) or as a father (Gower et al., 2017), or struggling to be both parent and nurse following hospital discharge (Elliott et al., 2021; Gaskin, 2018; Harvey et al., 2013). Two studies considered parental role in more detail. Fisk et al. (2022) described two categories of parental role in intensive care units: decision-maker/advocate; and providing emotional and physical support. There was little discussion of the psychological implications of these roles, but they were reported to be valued. Considering the whole parental experience, Lumsden et al. (2020) identified parental roles to promote normality and protect their child, which were respectively associated with pride and fear. Experiences of parental role, therefore, seem to influence psychological wellbeing among parents of CYP with CHD.
The lack of qualitative research into parental role and identity among parents of CYP with CHD means there is limited understanding of their experiences of these concepts. Thus, the current study aimed to explore the lived experience of parental role and identity among parents of CYP with FUH. The study focused on FUH because it is associated with increased caring responsibilities that may affect parental role and identity (Solberg et al., 2012). The research question was: ‘what is the lived experience of parental role and identity for parents of CYP with FUH?’
Methods
Design
A qualitative methodology was used. Data were collected using semi-structured interviews and analysed using Interpretative Phenomenological Analysis (IPA) because this approach corresponded with the aim to gain information about participants’ lived experiences, and the associated psychological entailments and meanings given to these (Smith et al., 2009).
Sampling and Participants
The idiographic focus of IPA means it is recommended to purposively establish a small sample with similar characteristics or experiences (Murray & Wilde, 2020). Participants had to reside in the UK and have a child aged 25 years or younger with FUH who had their completed Fontan surgery at least 6 months prior to interview. The rationale for this criterion was to promote homogeneity and allow exploration of the complete surgical journey, whilst acknowledging that the immediate post-surgery period can be particularly distressing (Harvey et al., 2013). Participants also had to be proficient in the English language. Parents were ineligible if their child had undergone heart transplant or was hospitalised at the time of interview, because these experiences have a separate nature from those being explored (Simeone et al., 2018; Woolf‐King et al., 2017).
Procedure
The research was approved by the authors’ institutional ethics committee and informed consent was gained from all participants. The research was advertised via specially created social media pages, and the social media, email lists, websites and newsletters of UK heart charities. Prior to arranging an interview, participants completed an ‘expression of interest’ form to ensure they met inclusion criteria. Interviews took place remotely, via Microsoft Teams, between April and October 2021, due to the ongoing Covid-19 pandemic. Verbal consent was confirmed and audio-recorded prior to the interview.
Data Collection
Semi-structured interviews were used to collect data because they promote focus on the research question, whilst allowing participants to recall their experiences in detail (Smith et al., 2009). Following review of the literature, input from the research team and consultation with a national heart charity, an interview topic guide (Appendix A) was developed to explore parental role and identity relative to parenting CYP with FUH. Interviews were recorded using a dictation device. Following the interview, participants were offered debriefing information and asked if they would like to receive a summary of the research. The interview guide was reviewed by the research team following each interview and adjusted once to incorporate consideration of differences between mothers’ and fathers’ experiences, because the first participant placed importance on this.
Data Analysis
The lead researcher (first author) transcribed interview recordings verbatim, using pseudonyms to maintain confidentiality. Data were analysed using IPA, as described by Murray and Wilde (2020). IPA was chosen to analyse the data because the underlying principles of phenomenology, idiography and hermeneutics, which respectively concern the essential aspects of a phenomena, the uniqueness of each individual’s experience and the researchers’ role in interpretation, corresponded with the aim to explore participants experiences and the psychological entailments of these (Smith, 1996). The idiographic nature of IPA also allows exploration of patterns and divergences within and across participant accounts (Murray & Wilde, 2020). Furthermore, IPA has proven insightful in research considering identity (Smith, 2004) and health (Smith, 2011), and has been used in similar previous research (Lumsden et al., 2020).
To begin, the lead researcher repeatedly read each transcript to become familiar with the data. Notations were made, and initial codes generated, regarding participants’ experiences of their identity and roles when parenting CYP with FUH. For each transcript, initial codes were grouped into themes, summarised narratively and titled. Themes were then compared across participants’ accounts and, again, grouped with an interpretative summary written about each. The themes were amended through discussion with the research team to form the final themes.
Quality and Reflexivity
There were several factors considered, and steps taken, to support quality within the current study. These steps may reflect Yardley’s (2000) principles of quality within qualitative research. Firstly, in relation to sensitivity to context, the researchers took care to understand participants’ likely perspectives and positions. Feedback was sought from UK heart charities, including parents of CYP with FUH, regarding the study materials (e.g., the interview schedule) and the appropriateness of conducting the research during the Covid-19 pandemic, which led CYP with FUH to be classed as vulnerable and in need of shielding.
The process of reflexivity throughout the research also demonstrates sensitivity to context. IPA recognises a process of ‘double hermeneutics’, in which participants try to make sense of and articulate their experiences and the researcher, in turn, tries to make sense of and interpret these (Nizza et al., 2021). Thus, it is important to recognise and ‘bracket’ the researchers’ pre-existing assumptions or beliefs to prevent undue influence on the analysis (Smith et al., 2009). Using reflexivity, the researchers actively considered their experiences and how these may influence the research. For example, the first author is a white, working-class woman who has worked psychologically in a tertiary Paediatric Cardiology Service. The potential influence of these experiences was managed using a reflective diary and regularly discussing reflections or challenges in supervision. The authors also met regularly to discuss the analysis of data, such as coding and interpretations, allowing opportunities to identify and challenge any presumptions or pre-conceptions.
In terms of commitment and rigour, the third author is an experienced IPA researcher. They used their expertise and skills to contribute to the analysis and interpretation of data, and to ensure this was of high quality. Indeed, the four quality indicators in IPA research outlined by Nizza et al. (2021) were present throughout the research. For example, a narrative of what it means to be parents to a child with FUH was constructed using carefully chosen quotations alternated with interpretations, and each theme contributed to the overall narrative. The analysis also paid attention to convergence and divergence across participants’ accounts.
Whilst replicability can be challenging to achieve in qualitative research due to the unique experiences of each participant, the current study used thorough audit trials that were audited by the third author to increase reliability (Smith, 2010). These steps ensured clarity on how findings were derived from the data, thereby related to principles of both commitment and rigour and transparency. Transparency and reliability are further evidenced by each theme being represented by data from at least 50% of the participants and consideration of both convergence and divergence across participants, consistent with guidance regarding the presentation of data in IPA studies (Smith, 2011). The final principle of quality identified by Yardley (2000), impact and importance, is evidenced in the discussion.
Findings
Twelve individuals responded to the study advertisement. Two did not meet inclusion criteria and two did not respond to correspondence to arrange an interview. Thus, eight individuals participated, and interviews lasted between 72 and 117 minutes (mean=86.63, SD = 14.85). Table 1 contains demographic information. Participants were all mothers aged 36–57 years (mean=47.25, SD = 6.320). All were White and six were employed. Six participants were married, one was single, and one was separated. Their children were aged 4–22 years (mean=16.75, SD = 5.19) and their child’s Fontan surgery was between 9 months and 18 years prior (mean=12.34, SD = 5.02).
Table 1
Participant demographic data
Pseudonym
Participants’ Ethnicity
Participants’ Age at Interview
Child’s Age at Interview
Child’s Position in Family
Child’s Sex
Child’s Condition
Time of Diagnosis
Time since Fontan
Emma
White British
50
15
1st of 3
F
Tricuspid Atresia
Prenatal
10 years
Holly
White British
36
4
3rd of 3
F
HRHS†, Pulmonary Atresia
Prenatal
9 months
Kerry
White British
42
22
1st of 3
F
Hypoplastic Left Heart Syndrome
Prenatal
18 years
Clare
White British
44
19
1st of 3
F
Pulmonary Atresia
Postnatal
13 years
Jen
White British
53
19
1st of 3
M
HRHS, Pulmonary Stenosis, TGA‡
Postnatal
15 years
Sophie
White British
45
16
1st of 2
F
HRHS, CAVSD§
Postnatal
11 years
Elise
White British
51
20
1st of 2
M
Tricuspid Atresia, TGA
Prenatal
16 years
Lisa
White British
57
18
1st of 3
M
Hypoplastic Left Heart Syndrome
Prenatal
15 years
† Hypoplastic Right Heart Syndrome
‡ Transposition of the Great Arteries
§ Complete Atrioventricular Septal Defect
Four themes were identified: (1) being a “heart mum”, (2) managing competing roles: “you have to wear lots of different hats all at the same time”, with subthemes (a) promoting normality vs. protecting the child and (b) mothering vs. nursing roles, (3) loss and regaining of identity, and (4) relinquishing control and letting go of caring roles. Figure 1 illustrates a conceptual model of themes, which suggests that ‘being a “heart mum” is an overarching identity that is informed by manging competing roles, changes to identity and manging the desire for control. A summary of each theme is detailed below.
Fig. 1
Conceptual model of themes
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Theme 1: Being a “heart mum”
The diagnosis disrupted expectations of parenthood and, informed by caring roles they adopted, participants developed a parental identity of “heart mum”, which was characterised by guilt and self-criticism: “You feel like you’re not doing a good job. It affects your sense of self, because you have all these ideas about being a parent that just aren’t possible” (Elise). Kerry added that medical roles left less time for her other children: “The other two are like: “it’s always about [CYP]”, so I do feel like a bad mum”. Thus, there was a sense of resentment and injustice about being a “heart mum”, particularly for Lisa, who experienced fertility difficulties and spent longer envisioning parenthood: “I remember feeling jealous of parents who have healthy children. I felt I’d been robbed of something”.
Most felt the “heart mum” identity was lifelong. However, Lisa disconnected from it when her son became unexpectedly healthier aged three, suggesting acute illness is key: “If he’d been much more unwell then maybe I’d still consider myself a heart mum”. Indeed, risk of harm differentiated this from a typical parental identity: “You couldn’t just be ‘mum’ when you’re waking up and your first thought is: ‘is my child alive?’” (Lisa). Even compared to her children with other CHD types, Holly noted: “I suppose, how I feel about myself as a mother is really different. I was nervous and felt all this responsibility”. Fear and responsibility inherent to being a “heart mum” seemed to limit the enjoyment taken from the identity: “I tried hard to be upbeat and positive, to enjoy my child and have a normal experience, but those additional responsibilities round every corner just knock you down” (Emma).
The medical risk and responsibilities of FUH also made feeling different central to the identity, creating sadness, frustration and isolation. Holly felt unable to relate to others: “It’s hard not to feel like the jealous parent, or frustrated or whatever, because their biggest worry is a tiny little one compared to mine”. Likewise, Sophie recalled exasperation when other parents’ worries seemed trivial compared to the life-threatening nature of FUH:
“Mums were talking about organic ketchup. I said, ‘well wouldn’t you just want your child fed?’ and that didn’t get a good response… I thought, how privileged you must be to make an informed choice about what your child eats”.
Some mothers positively appraised the “heart mum” identity by finding meaning in difference: “I’ve coped with my faith, you know, that we were given him for a reason” (Jen). Others became disillusioned by feeling judged and excluded, so tried to avoid or hide the identity: “I remember agreeing with those mundane worries to hide that I was different” (Sophie). Over time, most developed pride in their “heart mum” identity: “As she got older, though, I took that T-shirt off and I was like ‘no, I’m proud of that scar. That scar means you’re alive’” (Kerry). Such acceptance seemed to facilitate positive outcomes. For example, Elise embraced peer support that she previously avoided: “I now prefer being with parents with a similar outlook, who know their child is precious”.
Theme 2: Managing Competing Roles: “You have to wear lots of different hats all at the same time”
Subtheme 2.1: Promoting Normality vs. Protecting the Child
Trying to balance multiple additional roles was stressful and exhausting: “Being the parent of a heart child, you have to wear lots of different hats all at the same time” (Emma). A central dilemma was: “…trying to balance letting her be normal with keeping her safe” (Kerry). The risk of early death created urgency to facilitate normal experiences: “Making sure she’d experienced things like putting her feet on the beach, because we didn’t know how long we’d have her for” (Sophie). After CYP survived, mothers longed to promote normality to minimise the impact of FUH but feared associated risks, so adopted protective parenting styles: “I wrapped her up in cotton wool, no one was gonna go near her or hurt her. That’s my special baby” (Kerry). There was a sense of guilt about this: “I feel like bad cop when there’s a new activity and I say no because of her condition” (Emma). Kerry used emotional resilience to navigate the dilemma, recalling allowing her child on a trampoline: “I was terrified, but she needed a bit of normality. I had to hold that emotion inside”. Most participants also adapted ‘typical’ activities to remain reassured about safety: “They wanted to go camping but she wouldn’t have managed that… so we’d put sleeping bags in the living room” (Clare). This required additional planning, but mothers accepted the burden because it allowed them to feel the relief normality provided, as Sophie described translating medical notes for holidays: “I realised this was a lot of effort for a week, but it allowed us to have the normal experience”.
Conversely, participants were unwilling to compromise protecting their child through advocacy (e.g., seeking support or challenging professionals), because they felt others lacked understanding: “She needed me to advocate more because often her condition was hidden, so there’d be things she couldn’t do but people wouldn’t understand” (Emma). The hidden nature of FUH appeared to make advocacy difficult because mothers were labelled ‘overprotective’, even by professionals who understood FUH, creating sadness and anger: “Everyone saw me in that way of questioning them or being overly protective and I felt really isolated” (Holly). Thus, mothers felt they had to be ‘gobby’ or ‘pushy’. For some, this created pride: “If I didn’t [advocate] she wouldn’t be here and have the things she needs” (Kerry). Others felt it contrasted with their personality, creating embarrassment and anxiety: “I was quite shy, I wouldn’t have spoke up about anything… but with a heart child you really have to… it did make me feel sick” (Clare). Again, these mothers exercised emotional resilience to prioritise their child’s needs, as the risks of FUH made advocacy imperative.
Subtheme 2.2.: Mothering vs. Nursing Roles
During hospitalisation, participants felt helpless and took pride in mothering roles, which provided normality: “I had no role in intensive care, but anything I could do, I did. I put a hat and some booties on her, just normal mum stuff” (Kerry). Conversely, nursing roles seemed overwhelming. Clare tube-fed her child: “You have to make sure it’s in right or it could go in her lung. I remember thinking “oh god” and feeling under so much pressure”. Indeed, there was a sense that nursing roles were informed by guilt about other parents’ losses to FUH: “Not everyone was as fortunate as we were to take our child home. It put a lot of added pressure on” (Lisa). Therefore, participants prioritised nursing roles to protect their child but seemed to grieve ‘normal’ mothering experiences: “So much was doing stuff to her that the time I spent with her wasn’t mother-daughter” (Sophie). Most coped pragmatically and detached from their emotions. Holly delayed accessing psychological support due to fear of “falling apart”: “You can’t really think about it, you just get on with it”. For some, there was a sense of mothering through it all. Sophie created opportunities to be ‘mum’ wherever possible: “It felt like reading a book with her was such a big deal”. Similarly, Jen described managing medical procedures: “It was like: ‘hey now, you just look at me and lean into me’, being comforting and supportive as his mum”.
However, frustration that nursing roles fell to mothers, not fathers, remained: “He didn’t do all the researching and worrying I did… He was able to get on with things because I took that on” (Jen). Nonetheless, having control over nursing roles seemed to provide reassurance: “He’d avoid the difficulties… It could be frustrating, but I also wanted to do it. I wanted to know all of what was going on” (Elise). Over time, becoming practised in medical care allowed assimilation of nursing roles into daily life: “We got used to it, like giving her Weetabix in the morning, medicine was the same” (Clare). This appeared to facilitate acceptance, as mothers realised a balance of roles was possible.
Theme 3: Loss and Regaining of Identity
Whilst being a “heart mum” involved various psychological responses (e.g., guilt, anxiety), this third theme encompasses additional experiences of losing qualities and being unable to take part in activities that informed mothers’ personal identity. Participants felt distressed that previously valued identities (e.g., friend, worker) were overshadowed by being “heart mum” and associated medical roles:
“I wanted to build friendships, but I couldn’t because I’d have to keep dipping out of those circles to spend time in hospital… I couldn’t go back to work because I needed to look after her and I just felt consumed by it all (Emma).”
Some expressed self-criticism about changes to their identity: “I didn’t want to be this person, living off the state. I had bad opinions about that” (Kerry). Jen added: “I became a more serious person because my anxiety levels were so high”. There was a sense of helplessness when others reinforced this: “I didn’t have time for anything else, which made me feel quite low… Friends would say I wasn’t the person I was before. Work colleagues also said that, but I just had nothing left to give” (Elise).
Most understood identity loss as a temporary necessity, due to fear of the potential consequences if being “heart mum” was not their sole priority: “I never had the confidence to go off and do something for myself ‘cause I always had to be around and worried what would happen if I wasn’t” (Jen). However, making an active choice to prioritise medical responsibilities seemed to restore a sense of control: “I’ve accepted that, for the time being, everything is on hold to focus on this, and I will go and be me at some point” (Sophie). Nonetheless, there was jealousy that fathers did not experience this: “He was able to go to work and keep that part of him… I always used to be jealous when he would go on little work trips” (Jen). Conversely, Lisa’s experience of almost losing her child prompted a new outlook on life. As her child became healthier at a younger age and had fewer medical needs, she felt able to act on this and retain her sense of self: “I was able to realise that there’s a lot more to my life than just being a ‘heart mum’. That was helped by me working full-time and doing other hobbies”.
The process of regaining a personal identity evolved over time. Holly, whose child was younger, had not reached this stage: “I’m still finding my way back to me”. Most only felt able to take time away from nursing roles when their child became healthier, which was met with relief and fulfilment: “I literally couldn’t stop or else something really bad could happen to him. Whereas now, I’ve started to find myself again. I do yoga and a lot of exercise, being sporty is a real part of who I am” (Elise). This suggests participants’ personal identity and that of “heart mum” competed against one another. However, over time, the two appeared to become integrated into an overall sense of self: “Those parts of my identity [“heart mum” and friend] aren’t separate anymore” (Clare). Indeed, some found the experience of extreme loss eventually prompted greater connection to their identity: “I had more confidence to be my authentic self, to say who I was and what I believed in” (Emma).
Theme 4: Relinquishing Control and Letting go of Caring Roles
Over time, participants recognised a need to let go of caring responsibilities and pass these on to CYP “As the years went on, I’ve tried to let him take charge” (Jen). Only Holly, whose child was much younger, did not discuss this. Clare described the process of letting go: “It’s like a dip in a rollercoaster, we’ve took them [roles] all on and been doing them to then having to just let them go”. Therefore, in contrast to typical parenthood, the lengthy process of adjusting to additional responsibilities associated with FUH created an unpreparedness for relinquishing control over their child’s care.
Letting go left mothers to reflect on their life without additional caring roles. For some, there was immediate relief: “I don’t feel there’s much of a nursing role anymore… That’s a pressure off me” (Lisa). However, a sense of ambivalence emerged when they understood that letting go meant losing their coping strategy of control over their child’s care:
“I find it hard with the stages of independence… because I’m not in control of them. I know that’s a problem, but I’ve lived so anxiously and on edge for 16 years and the only thing that helped is having that control (Sophie).”
Emma explained that losing control increased anxiety about her child’s health: “The thought of not being there to help and check on her, like checking if she’s going blue, that’s really hard”. This seemed to replicate the uncertainty that permeated participants’ early parenthood, when their child’s survival was unclear, generating hesitance to let go.
Some participants reported further ambivalence from personal losses. Clare, whose child moved to university, described losing her purpose: “I didn’t have anywhere near as much to do, ‘cause she wasn’t there needing my help”. For Sophie, this translated into apathy about her wider identity: “As she’s becoming more independent, I’m losing that sense of purpose and realising there’s nothing else to me”. This illustrates that parenting CYP with FUH can be all-consuming, as letting go not only created practical changes to mothers’ daily responsibilities, but also distress at wondering who they were without these roles.
Despite shared reluctance, several participants accepted letting go as necessary and managed the emotional entailments in various ways. Some diligently educated CYP about FUH to feel reassured about their ability to cope: “All the things I’ve learned I’ve tried to share with him, so that he knows what to do” (Jen). Others tried to prioritise the parent-child relationship. For instance, Clare described reducing contact with professionals following arguments with her child: “We’ve had a few tiffs lately about me taking over when she speaks to the doctor. They phoned the other day… there was so much I wanted to say, but I had to wait”. Whilst mothers used differing coping strategies, there appeared to be a shared feeling that that letting go required emotional resilience.
Conversely, participants whose children had other additional needs tried to retain their caring roles. Kerry’s child suffered brain damage following multiple cardiac arrests. She stated: “The usual letting go you do as a parent just doesn’t happen”. These mothers experienced increased fear regarding their child’s vulnerability: “I’ll go out and walk the same path but the opposite way so I can intercept her in the middle. I’m not great with her independence, the ‘what ifs?’ are too big a risk for me” (Sophie). Nonetheless, the severe yet chronic nature of FUH seemed to make the process of letting go harder for all participants. Indeed, some suggested it is never fully complete because FUH carries a reduced life expectancy: “Your role and your worry never stops. You’ll never stop trying to look after them” (Jen). There was a sense it was important to maintain connection to caring roles, so that participants would feel prepared to resume these: “I’ll be in that carer role again someday… You need to be prepared for that full lifespan, not just until they’re 18” (Elise).
Discussion
The study addressed the gap in literature by exploring experiences of parental role and identity among mothers of CYP with FUH. Four themes were identified: (1) being a “heart mum”, (2) managing competing roles: “you have to wear lots of different hats all at the same time”, (3) loss and regaining of identity, and (4) relinquishing control and letting go of caring roles.
The first theme details novel findings regarding a “heart mum” identity, which developed as expectations of parenthood were disrupted. The experience resembles that described in McKenzie and Curle’s (2012) ‘End of Treatment Model’, which suggests parents are unprepared for changes to their role and identity caused by their child’s cancer diagnosis and treatment. A process of ‘getting through’ treatment is described, leading to adjustment. However, there is no end of treatment in FUH, which may explain why most participants in this study described a lengthier process of adjustment and lifelong connection to the “heart mum” identity.
Whilst some participants coped with isolation associated with being a “heart mum” by seeking meaning in difference, most tried to avoid this identity. Similar coping strategies of positive thinking and avoidance are reported among parents of CYP with various CHD types (Lumsden et al., 2019) and in the ‘End of Treatment Model’ (McKenzie & Curle, 2012). However, participants reported not only avoiding negative thoughts but actively trying to hide the “heart mum” identity. This may relate to the concept of perceived parental efficacy (i.e., beliefs about parenting abilities) (de Montigny & Lacharité, 2005). Low perceived parental efficacy is associated with low mood, so hiding the identity may have protected mothers from feeling unable to meet traditional expectations of parenthood. Whilst such avoidance may not be adaptive long-term, the ‘Family Resilience Model’ (McCubbin & McCubbin, 1993) suggests numerous hardships associated with chronc illness impede adjustment, so adaptation evolves over a longer period of time. Indeed, as their children grew older, participants began to take pride in, and embrace, their “heart mum” identity.
The second theme depicts mothers’ struggle to manage additional, competing roles that created fear and exhaustion. The roles were similar to those described in previous research, including protector (Lumsden et al., 2020; Rempel & Harrison, 2007), promoting normality (Lumsden et al., 2020) and a dilemma between being mother and nurse (Elliott et al., 2021; Gaskin, 2018; Harvey et al., 2013), suggesting similarities with other CHD types. This study was the first to describe all four roles together and to discuss the dilemma between normality and protecting the child. Descriptions of ‘protector’ roles were also extended from primarily involving hypervigilance to include advocacy. Fisk et al. (2022) similarly identified advocacy roles as key for parents of CYP with various CHD types in intensive care. It may be that the specific nature of FUH (i.e., severe yet hidden) increases the necessity of advocacy outside acute hospital environments.
The roles discussed seemed specific to mothers, consistent with gender stereotypes in parenting roles (Katz-Wise et al., 2010). Indeed, mothers discussed frustration that fathers did not have to manage these. Conversely, fathers’ accounts in previous research suggest a desire to be more involved (Gower et al., 2017). Interestingly, the findings extended existing knowledge to include how mothers managed competing roles, using control, planning, emotional resilience, and mothering through it all. The latter was described by Harvey et al. (2013) among mothers of CYP with various CHD types during hospital admission for surgery. This suggests the distress caused by home medical care for FUH requires similar coping strategies to those used in hospital, providing insight into the pressure these mothers feel under. Nonetheless, over time, participants became practised in nursing roles and felt able to balance alongside being ‘mum’. This mirrors the process of adaptation through problem-solving and coping in the ‘Family Resilience Model’ (McCubbin & McCubbin, 1993).
The third theme concerned mothers’ experiences of losing and regaining their sense of identity. This finding had not been previously reported, although Gaskin (2018) found parents felt disconnected from their life outside their child’s FUH. There were clear links with themes one and two, as mothers described feeling consumed by the “heart mum” identity and competing roles, leading to despondence. Similar findings are reported among parents of CYP with other conditions (Young et al., 2002). Identity theory suggests that parent identities are usually prioritised (Cast, 2004), and a child’s vulnerability may present an intensified need for this, as exemplified by participants’ descriptions of accepting identity loss in favour of keeping their child safe.
Participants regained their identity over time and this process seemed uniquely impacted by FUH, because the risks of the condition created fear of fulfilling identities outside of “heart mum”. However, some mothers employed deliberate strategies to avoid identity loss, supporting Pertriwskyj et al.’s (2016) suggestion that parents respond differently to feeling overwhelmed by caregiving identities. In their research with parents of CYP with disabilities, the authors posit that separation of oneself from the carer identity could be influenced by the child’s level of caring need. Similarly, in the present study, Lisa found it easier to maintain other aspects of her identity because her child was unusually healthy and required less medical care. Thus, the acute nature of FUH may create differences in parental identity and wellbeing compared to less serious forms of CHD.
The final theme detailed the process and emotional entailments of letting go of caring roles, developing previous descriptions of parental concerns about their child’s independence (Lumsden et al., 2020) and transition to adult services (Bratt et al., 2017). Parents of healthy CYP experience the developmental stage of ‘emerging adulthood’ as anxiety-provoking and can feel reluctant to promote independence (Kloep & Hendry, 2010). These difficulties are heightened among parents of CYP with chronic illnesses due to concerns about their child’s wellbeing when they lose control over their condition management (Heath et al., 2017). Participants in the current study discussed similar fears. However, they reported more intense ramifications of letting go of caring roles, such as lacking purpose or identity outside of these, highlighting how FUH can overwhelm mothers’ lives in ways that other conditions may not.
On reflection of the findings together, there were clear synergies between themes. Being a “heart mum” became an overarching identity informed by various, additional competing parental roles and associated impacts of enacting these roles on mothers’ sense of their own individual identity (Fig. 1). Furthermore, it seemed that participants’ experiences of parental role and identity appeared to change over time (see Fig. 2).
Fig. 2
Participants’ experiences of parental role and identity over time
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Mothers initially realised they would be parent to a ‘sick’ child, leading to changes in their appraisal of their parental identity. However, these changed remained minimal as parental roles remained similar to those of parents of healthy children, such as protecting their baby. The “heart mum” identity appeared to become established at birth, when ‘normal’ experiences such as holding their baby were not possible and mothers compared their experiences to those of parents of healthy children. Nonetheless, it was when children were discharged home from hospital that the most significant challenges to parental role and identity were seen, because mothers had to navigate additional nursing responsibilities that consumed their identity and left them feeling isolated. These challenges were most prevalent during early childhood, which is the most precarious time for survival (Best & Rankin, 2016). Indeed, these challenges also seemed to reduce as children became older and healthier, and mothers developed confidence in their caring roles. As such, throughout childhood and adolescence mothers’ experience of the “heart mum” identity and challenges to their parental role appeared to fluctuate in response to circumstances such as starting a new school or CYP seeking independence. As CYP aged further, the “heart mum” identity continued to exert influence on mothers’ psychological being but became integrated into their whole sense of self, especially as caring responsibilities reduced.
The ‘Parenting Under Pressure Model’ (Rempel et al., 2013) suggests similarly iterative experiences for parents of CYP with CHD over time through four phases: (1) encounter a new challenge, (2) adjust, (3) bond with the child, and (4) monitor and protect safety. The current findings map onto this model because challenges, methods of adjustment and efforts to be close to, and protect, their child were evident throughout. The iterative nature of the model also reflects the complex and changing nature of mothers’ identity and roles when parenting CYP with FUH, highlighting how navigating these may differ from conditions with more linear trajectories.
Clinical Implications
Participants reported feeling judged by professionals when advocating for their child, negatively impacting their wellbeing. Therefore, clinical psychologists in multi-disciplinary cardiac teams could provide consultation or training (Mercer et al., 2015), including information sharing or collaborative formulation, to support other professionals’ understanding of the psychological entailments of parenting CYP with CHD. This could increase compassion towards parents, allowing them to feel heard and, thus, more comfortable to seek reassurance or advice that may improve their child’s outcomes.
Many parents of CYP with CHD manage their child’s medical care pragmatically (Lumsden et al., 2019). This may be an adaptive coping strategy, but could prevent support seeking, as in the current study. Therefore, parents may benefit from support to reflect on their experiences and emotional wellbeing (Gramszlo et al., 2020). Participants were reluctant to seek support from existing relationships due to feeling different from parents of healthy CYP. Services could facilitate supportive networks between parents of CYP with FUH through group interventions to reduce isolation. These groups should be consistent, accessible (e.g., online access) and prioritise validation of parents’ experiences.
Mothers’ experiences of competing parental roles for their child with FUH had significant impacts on their identity and psychological wellbeing. Research suggests that professionals can underestimate the complexity of managing clinical care in home environments (Kirk et al., 2005), so additional practical support or education may reduce anxiety about nursing roles. Parents may also benefit from opportunities to discuss how they feel about providing medical care and the impact on their identity, which could be offered through formulation and intervention by a clinical psychologist (Mercer et al., 2015). Access to such support should be available throughout the CYP’s life, given the chronic nature of FUH.
Other health professionals could support parents to place boundaries on nursing roles to reduce the impact upon their identity (Woodgate et al., 2015), such as setting aside time for activities (e.g., reading). Spiers and Beresford (2017) found offering professional support with nursing roles (e.g., community nurses) can also allow parents time to be parents. However, the current study found mothers coped with fears about their child’s wellbeing by seeking control over their care. Therefore, options for professional support should be explored in a non-judgemental and sensitive manner, by recognising that it is understandable to seek control and that accepting support may be challenging. These conversations could be guided by a trauma-informed approach, which seeks to understand the impact of trauma and use this to inform ongoing interactions, to prevent re-traumatisation (Substance Abuse and Mental Health Services Administration, 2014).
As in previous research (e.g., Lumsden et al., 2020), the study highlights the need for targeted support at transitions when parental roles or identity may be acutely challenged. In particular, parents may benefit from support with letting go of caring roles when their child transitions into adulthood. Research shows it is important for parents to understand what to expect during this transition (Bratt et al., 2017), so psychoeducation jointly facilitated by medical teams and clinical or health psychologists may be helpful.
Strengths and Limitations
The study adds to existing literature by exploring identity and parental role among mothers of CYP with FUH. Prior research had not considered these concepts in depth, potentially overlooking their significance in shaping how parents cope with their child’s condition.
Participants were recruited via social media and charity newsletters, so were self-selecting and may have held specific characteristics, such as being emotionally ready to share experiences. The recruitment method could also have excluded those who had not connected with charities or had no internet access, and experiences among these individuals may have differed.
Fathers were not represented in the sample, a limitation across CHD research (Gower et al., 2017), so the findings may not reflect their experiences. Indeed, mothers noted differing experiences from fathers. For instance, Jen felt her husband gained relief from his ‘worker’ identity, whilst she lost this. Furthermore, most participants’ children were teenagers or adults at the time of interview. As such participants were often recalling memories of their experiences from many years prior, such as the birth of their child, which can be associated with recall bias and, therefore, impact the accuracy of interview data (Alaszewski, 2006). Although participants all provided vivid accounts of their experiences, interviewing parents still in the medically acute phases of FUH may have revealed additional or differing information. For example, Holly was the only participant who reported not regaining her identity.
The study used an UK sample, so findings may differ from research in other countries. For example, the financial costs of medical care in some countries significantly affects parents’ experiences (Connor et al., 2010) and might impact perceptions of parental roles. Similarly, there is a higher incidence of CHD in Black and Asian populations within the UK (Knowles et al., 2017) but all participants in the current study identified as White Britsh. Therefore, the perspectives of parents of other ethnicities, including any ways in which their experiences of parenting a child with FUH might have been differed according to their race or ethnicity, were not represented within the current study. Furthermore, CHD is also more prevelant in the Middle East (Zimmerman et al., 2020). The study was completed solely with participants based in the UK, so experiences of parents living in other cultures with differing healthcare systems could not be considered. Indeed, experiences of parenting CYP with FUH can differ between Eastern and Western cultures (Im et al., 2018).
Future Research
The study offers novel findings regarding the development of a “heart mum” identity. Future research could provide further insights, for example, whether mothers of CYP with other forms of CHD develop this identity. Grounded theory could also be used to construct theoretical understanding of how the identity develops, because the methodology focuses on generating theory about social or psychological processes and has been used to understand the development of other identities, such as that of ‘professional’ (Moss et al., 2014).
Little research has considered support for parents whose role and identity is affected by their child’s health. It would be useful to identify and evaluate possible interventions among parents of CYP with FUH, so that appropriate support can be offered. Participants described being unprepared for changes to role and identity, leading to guilt, self-criticism and exhaustion trying to balance multiple roles. Thus, psychoeducation regarding changes to parental role and identity, and understandable psychological responses, may be helpful. Ay Kaatsiz & Öz (2020) explored the impact of psychoeducation among mothers of CYP with cancer and found no change to expectations of parental roles, but some reduction in associated psychological difficulties.
As the study did not include perspectives from fathers, or from individuals outside of white, Western cultures, future research should explore experiences of parental role and identity among these populations to identify similarities and differences, which could inform professionals’ ability to tailor support to individuals.
Conclusion
The study findings demonstrate that the entailments of FUH can significantly impact mothers’ parental role and identity and, in turn, their psychological wellbeing. In particular, mothers struggled to balance multiple additional roles and maintain a sense of personal identity. The influence of other factors on these experiences, including the child’s health status and interactions with others, cannot be understated. The findings carry implications for how health professionals support mothers of CYP with FUH.
Compliance with ethical standards
Conflict of interest
The authors declare no competing interests.
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• Could you tell me a bit about your child and their condition?
• What was it like when you received the diagnosis?
• What were some of the key events along this journey?
Parenting & parental role
• Is your child with CHD your first child?
• If no, ask briefly about other children.
• When did you find out about your child having single ventricle CHD?
• E.g., in relation to child, others & professionals.
• How did you understand/make sense of that?
• How would you describe your role as a parent of a child with single ventricle CHD?
Expectations of parenthood:
• E.g., pre-diagnosis
• How does this compare to what you were expecting?
• (If relevant) How does this compare to your role when parenting your other child(ren)?
Changes to parental role
• E.g., at diagnosis, child being in hospital, ICU, surgery, transition home from hospital.
• Have you noticed any changes in your role at any time throughout your journey with your child?
• How have you coped/adapted to this?
• How has having this child changed your parenting style (from previous children or from expectations)
• What has been easiest/hardest?
• What have you noticed about your parental role as your child has gotten older?
• E.g., stricter/more lenient
• E.g., transition to school
Impact on identity
• How has having a child with single ventricle CHD impacted upon how you see yourself?
• How has having a child with single ventricle CHD impacted on other aspects of your identity (i.e., as a partner, friend, employee) or your relationship with them?
• Have other aspects of your identity receded since having a child with single ventricle CHD?
• If no, how have you balanced these identities and associated commitments?
• To what extent has the amount of pleasure you take from these other identities been affected by having a child with single ventricle CHD?
• How has having a child with single ventricle CHD impacted how others see you?
