Parental cognitive appraisals and coping behaviours following child’s epilepsy diagnosis: A qualitative study

Abstract

Management of childhood epilepsy places significant demands and increased stress on the family unit. How parents adjust to this illness-related stress is believed to be shaped by their cognitive appraisals of the situation and the coping behaviours that are employed (Wallander & Varni, 1992). We investigated the cognitive and behavioural strategies that regulated psychological symptomatology in mothers following an epilepsy diagnosis of their child. Twenty-one mothers participated in this qualitative study. Interview data was analyzed using theory-driven thematic analysis. The analysis revealed common effective cognitive appraisals that include maintaining a positive outlook, re-structuring expectations and finding meaning from their experiences. Problem-solving, emotional venting, time to self and speaking with parents in similar situations were behaviours that buffered against carer strain. The coping strategies identified in this study can be seen as sources of resilience and therefore provide a guide for improving parent outcomes in the context of pediatric illness. Implications for clinical services are discussed in this paper.

Keywords

Child illness coping epilepsy maternal adjustment stress-processing

Introduction

Epilepsy is a common and often chronic neurological illness characterized by recurrent seizures from disruptions of normal electrochemical activity in the brain. According to incidence rates in the United States, 200,000 new cases of epilepsy are diagnosed each year and within this cohort, 45,000 are under the age of 15 (Epilepsy Foundation of America, 2009). The early onset of epilepsy has significant implications for child development and recurring seizures can be profoundly detrimental to physical, psychological and social functioning.

Impact of epilepsy on parents

There is consistent evidence that parents caring for a child with a serious chronic illness have an elevated risk for impaired quality of life (Hatzmann, Heymans, Ferrer-I-Carbonell, Van Praag & Grootenhuis, 2008). Alongside typical parental anxieties, this group of parents often carry the burden of additional stress such as assuming day-to-day responsibility for long-term symptom management and remaining vigilant to potential developmental anomalies and psycho-social difficulties associated with their child’s condition (Australian Institute of Health and Welfare, 2005). While research evidence has suggested that parental adjustment to various childhood chronic illnesses can be relatively homogenous (Wallander & Varni, 1992) the question remains whether the nature of epilepsy poses unique challenges to parents’ distress and coping ability.

The risk of brain dysfunction underpins each epileptic seizure, and children tend to be more vulnerable to developmental delay or learning disabilities (Noeker, Haverkamp-Krois & Haverkamp, 2005). The visibility of seizures can attract stigma and foster worries in parents about their child’s prospects for social acceptance (Chiou & Hsieh, 2008). Seizures are unpredictable by nature and once triggered parents need to keep their child safe from environmental dangers. In many cases, parents and siblings are required to watch until the seizure has run its course, which can be a terrifying experience where parents experience a loss of control and fear for their child’s well-being (Besag, Nomayo & Pool, 2005). Furthermore, child adaptation to epilepsy can be a struggle and children appear more prone to psycho-social problems relative to peers with other chronic diseases (Dunn & Austin, 2004; Salpekar & Dunn, 2007).

Unfortunately the present literature on parental adjustment to child epilepsy lacks a clear theoretical focus. When specific theoretical constructs have been examined, the papers have largely been concerned with describing the scope of adjustment problems. Few have examined resilience-building factors that can be targets for intervention to improve parental adjustment outcomes.

Parental adjustment: Risk-Resistance Model

While the severity and consequences of pediatric illness are expected to shape parental distress to some extent, it is believed that certain ways of thinking and responding can buffer against the negative psychological sequelae. A systematic conceptualization of these person-centred factors has been proposed in the Risk-Resistance Model (Wallander & Varni, 1992). The model proposes parental adjustment to be the outcome of a complex interplay between risk and resistance factors (see Figure 1). Risk factors such as disease disabilities, the child’s functional independence, disability-related stressors, daily hassles and major life events are seen to establish a climate that is conducive to adverse outcomes in parents’ mental, social and physical functioning. Conversely, stress processing, personal factors and the family’s social-ecological and support network are viewed as potential resistance (or resilience) factors that moderate the relationship between child chronic illness and parental adjustment. The stress-processing factor is demarcated into cognitive appraisals and coping strategies to recognize the distinction between the way in which circumstances are cognitively appraised and the behavioural responses for managing the situation. Wallander and colleagues have found that maternal adjustment is not simply related to unequivocal illness factors beyond parental control but is influenced by the parent’s perception of self-competence, problem-solving ability, hope, perceived role restriction, family support, marital satisfaction and social networks (Horton & Wallander, 2001; Wallander & Varni, 1998).

Figure 1.

Risk-Resistance Model (Wallander & Varni, 1992).

Under the premise that parental adjustment has shared cognitive and behavioural characteristics, the Risk-Resistance Model provides a basis for which individual differences within a specific disease and group differences across different chronic illnesses can be systematically compared. In other words, the Risk-Resistance Model offers a theoretical framework to investigate factors that protect against the psycho-social risks associated with parenting a child with epilepsy.

Cognitive appraisals and coping behaviours in the epilepsy literature

Considering the important role of stress-processing in shaping parental adjustment, it is useful to ascertain the effects of certain perceptions and behaviours. Parents who maintained a strong sense of self-esteem and felt competent in managing their child’s treatment regime tended to report lower levels of distress (Silver, Bauman & Ireys, 1995). In contrast, parents who demonstrated high degrees of learned helplessness experienced depressed mood and poor adaptation (Shore, Austin & Dunn, 2004). Similarly, a prolonged perception of vulnerability and anxiety about the child’s future is associated with greater psychological strain for parents (Ramaglia et al., 2007). Concerns about the child’s health are not necessarily global because while parents are more likely to be pessimistic about future health risks and deem their child vulnerable to additional health problems, they may still remain optimistic about their ability to manage epilepsy-specific health risks (Gordon, Dooley, Camfield, Camfield & MacSween, 2002).

In regards to effective coping behaviours, parents with a spiritual or philosophical attitude to life, who actively forged social supports and were comfortable sharing their emotions were less likely to be anxious about their child’s epilepsy (Chapieski et al., 2005). Social support alone did not necessarily predict positive adaptation but rather satisfaction with social support was also important (Pal, Chaundhury, Das & Sengupta, 2002). Emotion-focused coping strategies such as wishful thinking, self-blame and avoidance were largely ineffective and only served to exacerbate distress (Rodenburg, Meijer, Dekovic & Aldenkamp, 2007). Meanwhile problem-focused coping behaviours such as cognitive restructuring, enhancing social support and information-seeking behaviours lowered parenting stress (Rodenburg et al., 2007).

Two existing qualitative studies have specifically looked at parents’ experience of caring for a child with epilepsy. In Oostrom and colleagues’ (2001) study up to a third of the parents felt overwhelmed by the care-giving process and described the feeling of being thrown off balance (Oostrom, Shouten, Kruitwagen, Peters & Jennekens-Schinkel, 2001). This feeling of ‘being thrown off balance’ was not attributed to long-standing adversities or seizure type but rather to the aetiology of the epilepsy and a diagnosis of cryptogenic epilepsy especially (epilepsy without an obvious cause) tended to leave parents with a feeling of great suspense. Mu’s (2008) study with a Taiwanese sample found coping patterns that included vigilant parenting, reframing of parental roles and confronting the culturally negative stigma associated with epilepsy by ensuring their child’s social re-integration (Mu, 2008).

Considering the broad range of thoughts and behaviours possible in human repertoires, it is unfortunate that there are so few studies that provide parents with an opportunity to define their own experiences as opposed to adhering to pre-determined categories in questionnaires. To date, there have been few qualitative studies that elicit rich and descriptive data on parents’ stress-processing in the context of caring for a child with a chronic condition.

Study aim

To our knowledge, there are no qualitative studies that specifically explore the cognitions and coping behaviours used by parents of children with epilepsy and the resultant effect on parental adjustment. This study aims to contribute new information to the literature by investigating parental narratives and experiences in the aftermath of an epilepsy diagnosis, with a focus on:

Cognitive appraisals of the situation;

Coping behaviours mobilized;

The application of the Risk-Resilience Model to mothers’ adjustment.

Method

Design

Mothers of children with epilepsy were individually interviewed and interview data was subjected to thematic analysis for identifying, analyzing and reporting patterns within the data (Braun & Clarke, 2006). The aim of this study was to explore parents’ internal narratives and experience of chronic illness in their child. In this respect, we are interested in the meaning ascribed to experiences expressed through language not the function of language per se. Realist methods treat language as a reflection of reality and argue that experience can be effectively accessed through verbal accounts of the experiences (Braun & Clarke, 2006). For the purposes of this study, a realist approach was adopted and parents’ talk was treated as genuine expressions of their experiences.

Participants

Purposive sampling was used to recruit participants caring for a child with epilepsy. Participants were recruited via the Neurology Department’s database at the Women’s and Children’s Hospital in South Australia. The following inclusion criteria were used to screen for participants: biological parent or legal guardian of a child diagnosed with epilepsy by a Consultant Neurologist at least 6 months but not more than 2 years ago, between the ages of 3 to 12 years. The rationale for the age range was to produce a relatively homogenous sample in line with the view that the majority of childhood epilepsy cases are diagnosed by the age of 12 and to control for the adjustment processes normative to having a new infant in the household. Parents of children with significant co-morbid chronic illness or global developmental delay as judged by their treating neurologist were excluded from the study.

In light of the initial poor response rate (10%), recruitment was extended through the Epilepsy Centre of South Australia¹ who contacted parents through written invitations. To increase the number of potential participants, the inclusion criteria was relaxed from the age range of 3–12 years at diagnosis to 1 and 15 years of age and the time lapsed since diagnosis was increased from 2 to 5 years. Through an earlier discussion with the neurologists it was proposed that a medical diagnosis in children is such a significant event that it often leaves a powerful impression on parents so it was anticipated that memories of experiences would remain strong even at the 5-year mark.

The recruitment process was successful via the Epilepsy Centre and the end sample consisted of 21 mothers. While efforts were made to recruit male participants, only one father agreed to participate in the study. To maintain the cohesiveness of the dataset, his contribution was not included in the overall data analyses. With the exception of one, all participants had experienced the diagnosis within a 5-year time frame. One mother had managed the epilepsy for 6 years but a decision was made to include her data because her adjustment was reported to have taken place a year ago and she reported having a vivid memory of the adjustment process. Since the Epilepsy Centre’s database was not equipped to exclude co-morbid cases, three participants were interviewed whose child had previously been diagnosed with a chronic co-morbid health condition or learning disability. The dataset for co-morbid cases was subsequently included to explore potential differences in adjustment themes. Epilepsy is a variable condition that presents as a spectrum of different seizures and the sample represented various types that include tonic/clonic, absence and also mixed seizure types. It should be noted that a large proportion of participating parents (eight) had previous experience in nursing or in occupations that involved working with children with special needs. Six more parents had personal experience dealing with their own or a family member’s chronic health condition, with one parent even having epilepsy as a child (see Table 1 for further details).

Table 1.

Characteristics of the children and mothers.

	Total
Children	n=21
Mean age in years at diagnosis (SD)	6.0 (3.82)
Time since diagnosis in years (SD)	2.6 (1.71)
Sex (%)
Boys	12 (57)
Girls	9 (43)
Diagnosis^a
Absence	5 (24)
Tonic/Clonic	4 (19)
Myoclonic	1 (5)
Simple partial	2 (9)
Complex partial	4 (19)
Mixture	5 (24)
Parents	n= 21
Mean age in years (SD)	39.7 (7.86)
Marital status (%)
Married	19 (90)
De facto	1 (5)
Single	1 (5)
Cultural background (%)
Caucasian	17 (81)
European	3 (14)
Asian	1 (5)
Education (%)
Year 10/High School	6 (28)
Undergraduate/Diploma/Tafe	11 (52)
Postgraduate	4 (19)
Previous experience with chronic illness (%)
No	9 (43)
Professional (work)	5 (24)
Personal	7 (33)

Absence: brief loss of awareness, vacant stare, often mistaken for daydreaming (up to 30 s).

Tonic/clonic: loss of consciousness, body stiffens and general muscle jerking (1–3 minutes).

Myoclonic: uncontrolled muscle jerks and brief loss of consciousness.

Simple partial: fully conscious, stiffening/twitching of limbs or loss of ability to speak (up to 1 minute).

Complex partial: loss/distorted awareness, chewing movements, fiddling, aimless wandering.

Definitions from Epilepsy Centre (2009).

Interview procedure

Demographic information was collected from participants (see Table 1). A semi-structured interview guide was then used to elicit discussion on:

parental perceptions and responses following the diagnosis;

how such thoughts and behaviours may have evolved with time;

the catalysts for any changes in thoughts or behaviours and;

subsequent effects of these cognitions and coping patterns.

Interviews ranged between 45 and 90 minutes in duration. The interviews were audio-taped for transcription. Risk management guidelines were established including referral pathways to clinical support in the case of adverse events. However no participants reported increased distress or required further follow-up. Data collection was ceased when it was deemed that thematic saturation had been reached. At present, there is no prescribed method for quantifying saturation and the marker for sampling adequacy is when sufficient depth and breadth of information is achieved (O’Reilly & Parker, 2013). Following 21 interviews lasting for an hour on average, the appraisals and behaviours raised by participants in later interviews were rarely emerging for the first time and were in line with the strategies previously discussed. Given that thematic saturation is taken to mean that data should be collected until there are no longer any new emergent patterns, it is believed that an adequate corpus of data was achieved in a sample of 21 to describe the phenomenon of interest. A sample size of 21 far exceeds the guidelines of 6 to 12 interviews proposed by Guest and colleagues for projects where the aim is to understand common perceptions and experiences among a group of relatively homogenous individuals (Guest, Bunce & Johnson, 2006). In the field of qualitative inquiry, it is acknowledged that even if data collection falls short of saturation, the implication is that the phenomenon has not yet been fully explored rather than that the findings are invalid (O’Reilly & Parker, 2013).

Data analysis

The interviews were transcribed and analyzed using thematic analysis principles as outlined by Braun and Clarke (2006). As a deductive thematic analysis, theoretically interesting features were coded (as themes) in a systematic fashion across the entire data-set.

Recurring codes were clustered into sub-themes and over-arching main themes were then produced by collating sub-themes that related to a common theoretical construct. These themes were repeatedly cross-referenced with the transcripts to ensure that they were indeed grounded in the data. To preserve methodological rigour, validation checks involved a second researcher reviewing samples of the interviews to verify that quotes were in keeping with the derived themes. Differences in opinion were discussed and subsequently resolved.

Results and discussion

From the raw data provided by the 21 interviews, 10 main themes and corresponding sub-themes emerged that spanned maternal experience of the diagnosis and the route to adjustment. Discussion of the main themes was restricted toward three select themes of interest: adjustment process, cognitive appraisals and coping behaviours (see Table 2). These main themes will be described in greater detail followed with their theoretical implications.

Table 2.

Themes of interest.

Themes (number of participant, frequency of mentions)	Sub-themes (frequency of mentions, incl. within-participant)
Adjustment process (21,59)	Change in emotional state, contributing factors
Cognitive appraisals (21,171)	Normalizing (31), positive focus (67), one day at a time (19), control (22), finding meaning (32)
Coping behaviours (21,128)	Emotional ventilation (35), problem-solving (54), time to self (21), similar parents (18)

The adjustment process

Whilst mothers described significant emotional upheaval subsequent to their child’s diagnosis, the general consensus was that their experience of epilepsy improved over time. Adjustment was described as a gradual process that for some lasted for as little as 4 weeks but for others extended to a number of years. Adjustment was defined as the awareness that worries have eased and the feeling of being more relaxed in daily life. Parents tended to attribute their adjustment to the control of seizures through medication. As one mother had explained, “when you start to get relaxed is when you don’t see the seizures anymore … once it’s under control everything gradually gets better”. Even if seizures have not ceased, there was comfort in witnessing and managing seizures over a number of occasions:

It does get better. Initially when she started having seizures, every seizure was terrible and you’d freak out over them. Now she might have a couple of seizures in the morning and its nothing. I still worry … but it’s not as traumatic as when it first started.

Once parents developed an understanding of the care procedure through their lived experiences, seizures became less of an ordeal and as one mother surmised:

I think it’s just we know what we have to do. The first couple of times you have adrenaline just racing through you. Now you have adrenaline racing but you can go “okay, we need to do this, we know what’s going to happen when we go to the hospital, we understand it”.

Many mothers (15) referred to seizure control and lived experience to account for their adjustment and rarely did they mention the higher-level stress-processing identified in the literature as a factor that enhances adaptation. Deeper probes were necessary to unveil further cognitive appraisals and coping behaviours that facilitated the adjustment process.

Cognitive appraisals

Mothers’ perceptions of the gravity of the epilepsy diagnosis was ameliorated by thought patterns that included normalizing the existence of epilepsy in their lives; drawing comparisons with less fortunate people; maintaining a strong sense of hope; living one day at a time; accepting the futility of attempts to control seizures and finding meaning in adversity.

Normalizing epilepsy

Parents drew comparisons to other chronic conditions as a means to minimize the stigma and normalize the medical management of seizures. For example:

A lot of people used to hide it didn’t they [epilepsy]. We just made it oh well, it’s like being diabetic … you take tablets and you’ll be alright. We told him it’s not going to change his lifestyle at all.

Other parents focused on the belief that their child will lead a normal life with one parent explaining, “without diminishing how serious it is … people with epilepsy live normal lives and I didn’t think that. I did not think that at the beginning”. Normalizing the impact of epilepsy on their child and lifestyle enabled parents to embrace a sense of normalcy into their lives notwithstanding the changes the diagnosis had introduced into their family.

Parents found it helpful to remind themselves that epilepsy is simply another issue to deal with among the myriad problems that are a part of life. There was the awareness that every other family will encounter their own unique set of challenges and the recognition of epilepsy as part and parcel of everyday life prevented them from dwelling on the unfairness of their situation. As articulated by one mother:

I realized after a while that every family is different and every family has their own issues to deal with. In your family, you’ve just got to cope with what you’ve got and just do the best you can with what you’ve got.

Maintaining a positive focus

When encountering families with other chronic conditions, mothers’ insight over their own situation drastically shifted:

Sometimes I do feel a bit ripped off that [son]’s got it, I do think “oh … poor thing, he might struggle with it later in life”. But then I rationalize and think well he could have a million other terrible things. When I sit in the neurology department here and some of the children who are so mentally impaired. I walk out here every day and think bloody hell, my life is so easy.

Another mother exposed to a family managing cancer expressed:

A good friend of hers [daughter] had bone cancer and you see her parents and they’re absolute troopers. This little girl went through chemo and lost all her hair. She was heavily into dance and she’ll never do ballet again. These are people who are really suffering so that puts it into perspective.

Making comparisons with more aggressive or debilitating health conditions moved mothers to re-evaluate the gravity of their situation and to perceive epilepsy management as comparatively easier. It was noted that parents dealing with absence seizures were similarly inclined to draw comparisons with tonic-clonic seizures to feel fortunate that they are managing a form of epilepsy that is usually milder in presentation and consequences.

Epilepsy can be a condition that resolves itself prior to adolescence and many mothers internalized that hope. They maintained an optimistic outlook and chose to believe in the best case scenario of their child growing out of epilepsy in the near future:

We knew we were dealing with something that down the track will have a great outcome so really it was just a short-term issue that we’re happy to deal with.

The same mother spoke about deferring her research on the future management of her child’s epilepsy because of her optimism that epilepsy will cease to be a problem.

It’s just optimism isn’t it…that he’ll be off medication, that he’ll be all right. If he’s not well then you have to deal with it when it comes up but I’d hate to be thinking about that now.

Presumably, this approach of planning for a recovery as opposed to planning for a lasting condition serves to maintain optimism that the situation will improve and avert negative predictions for the future. The idea of forestalling consideration of the long-term implications of epilepsy was a repeated idea raised in various ways by parents and therefore warranted identification as a separate theme ‘one day at a time’.

‘One day at a time’

It is unavoidable for parents to consider at some stage the implications epilepsy may have on their child’s future. However, the mothers in this sample quickly realized that worrying too far in advance about possible limitations was demoralizing and counter-productive. Instead, they tended to focus on the present and avoided thinking about how their child will manage in the future. As described by one mother:

If I started thinking “oh my god, what’s going to happen to him in the future” I just go stop! You have to deal with today, one day at a time. I try to bring myself to the present.

This approach also came in tandem with the re-structuring of expectations so that “good days” were more attainable. In explaining her interpretation of a good day, one mother stated, “if he goes to bed at night and hasn’t had a seizure all day then that’s been a good day”. It appears that parents’ interpretations of what constitutes quality of life were revised to accommodate the limitations that epilepsy may place on their lifestyles. Parents learnt to abandon previous expectations inherent with healthy children and set more realistic bars for achievement and happiness. Living one day at a time and removing expectations also protected parents from disappointment when seizures did transpire. As one mother had rationalized:

You just have to take things slow, even a week ahead you can’t rush it… You never know, something can go bad next week so you just have to take it day by day, hour by hour even. If you shake it off and you’re not anticipating anything, it’s easier.

Control

The issue of control was a prevalent theme. Central to the issue was the perceived inability to prevent the occurrence of seizures or to control their duration:

I think that was one of the biggest things, just that lack of control… It’s just that feeling of helplessness and it takes its toll… A couple of mornings when she’s had quite bad seizures, I feel very vulnerable and very fragile emotionally because you can’t control it.

Since the loss of control is an intense stressor for parents, coming to terms with the lack of control was a significant stride towards adjustment. For example: “telling myself it’s out of my control … if he’s going to get full-blown epilepsy [from absence seizures] then he’s going to get it, worrying about it is not going to make it not happen”. With time, parents came to accept that there are factors that are within their influence but there are also those that are beyond the scope of their control:

I’m still aware of the unpredictability of it but I kind of understand it more in that there are certain aspects I have no control and certain aspects that I can reduce the risk factors. So that has given me a bit more clarity.

Accepting that there were certain limits to their control and moderating their vigilance and management duties according to that change in perception reportedly improved adjustment.

Meaning in adversity

Even amidst the challenging management regimens and the emotional strain, mothers still found value in their experiences of adversity and expressed a keen desire to use their personal experiences to aid others. Many shared the view that the community should be educated on the effects of epilepsy. As described by one mother, the distribution of information is mutually beneficial; “I think it’s more enlightening than anything because they get to learn from me, I get to learn from them. The more people who know about it, the better”. Mothers took pride in feeling that they were well placed to offer advice to others:

I feel an advocate for those people [parents]. I say ‘no, no don’t go to a GP, go straight to a pediatrician because you’ll get what you want with them’. We need to inform people what’s best for them.

One incentive to be involved in this research was to impart their experiential journey and offset what they perceived to be a lack of information and support for their emotional struggles. Some mothers were surprised at the psychological impact of the epilepsy diagnosis which they did not feel prepared for:

I guess part of it is a grief reaction isn’t it. Suddenly you have this other thing [epilepsy] that you’re dealing with so disturbed sleep, disturbed appetite, you might find you’re really tired, its hard to function. It would be nice for someone to say these are kind of the normal things.

To be able to provide credible advice to other parents and expand the public’s awareness of epilepsy was rewarding for mothers and a means of finding a positive purpose behind their experiences.

Parents were also able to reflect on the personal growth that comes from overcoming challenging life events. For many, the experiences arising from an epilepsy diagnosis transformed their understanding of their self or life. Parents marvelled at their own ability to cope and as provided by one mother:

If somebody had told me at the beginning of the year that this is what you were going to go through … I would have thought “nope I would never be able to cope with that!” Yet I have. So it’s taught me a little about the diagnosis of a disability and how that affects you emotionally but then also that I have quite strong coping mechanisms.

Following her child’s diagnosis, one mother now fully comprehended the gravity of chronic conditions.

I went through private school and university. You don’t even think about disabled people. You don’t know anyone and if you found out that someone had a disabled kid, “oh dear, poor people” and not give another thought. It didn’t impact your life in any way. And if I didn’t have a disabled child, I’d be the same.

In various ways, participants felt that that the epilepsy diagnosis had precipitated a personal growth that has left them with a more enlightened understanding of the world.

Theoretical discussion of identified themes for cognitive appraisals

Past research has found normalization, positive comparisons, optimism and assisting others with personal experience as common coping mechanisms in parents managing child illness (Ray, 2002; Ware & Raval, 2007). However, there is limited investigation on how parents reflect on their personal growth to foster a positive account of their experiences of adversity. One qualitative study addressed positive experiences stemming from long-term management of a pediatric condition but the focus was centred on parental perceptions of the child’s personal growth (Gannoni & Shute, 2010). Since meaningful attributions for ordinary events have been found to increase positive affect in adults with illnesses (Folkman & Moskowitz, 2000), it is expected that parents can similarly benefit from constructing positive accounts of challenging experiences.

While acceptance of a lack of control helped disperse parental anxieties, this act of ceding control is to be differentiated from learned helplessness or low self-efficacy, the global perception that all actions are ultimately futile (Shore et al., 2004; Silver et al., 1995). Parents in this sample demarcated aspects of the illness that they could influence and subsequently directed their energies to resolving these amenable factors while abandoning efforts to change those beyond their control. In this way parents not only improved their efficiency at problem-solving but also reduced the risk of destructive self-criticism when they ‘fail’ to prevent an inherently uncontrollable event.

The approach of ‘living one day at a time’ has also been referred to as a form of denial in parents (Peck & Lillibridge, 2005). It was suggested that by living on a day-to-day basis, fathers avoided confronting the progressive nature of the child’s illness and overlooked possible future health needs. While denial or avoidance has historically been identified as a poor coping strategy, it has been argued that denial in the context of a pediatric illness enables parents to distance themselves from the emotional turmoil of a diagnosis and gather the drive to undertake future coping and family development (Coyne, 1997). As counter-intuitive as it may be, parents denying the potentially permanent nature of their child’s epilepsy appear to manage well on a psychological level. It appears that denial of the chronicity of epilepsy and hope for a recovery are constructs along the same continuum and it has been well-established that parents expecting desirable things to happen in their child’s future are more likely to succeed in emotional adjustment (Wong & Heriot, 2008).

Coping behaviours

Mothers described emotional ventilation; active problem solving; taking time for self and speaking with parents in comparable situations as effective behaviours in regulating the emotional strains that surfaced from managing epilepsy.

Emotional ventilation

Sharing thoughts and feelings over epilepsy was not unanimously endorsed by all mothers. Some mothers perceived their child’s care to be the utmost priority and their own emotional regulation to be of lesser importance and subsequently limited conversations to practical ideas about seizure management. Those who were comfortable expressing their emotions described crying or talking about their struggles as cathartic. Some mothers characterized such behaviours as a necessary step in regulating the initial grief so that they could move on to problem-solving:

I think I spent the entire time crying. But she [friend] didn’t try to fix it because it wasn’t fixable but just accepted that was just what needed to happen before I could go okay, well I’ve done that bit now, I’ve got that response out of the way now so I can figure out some practical ways in which we can live with this.

Most mothers agreed that emotional expression prevented worries and negative emotions from accumulating and this idea of a release was conveyed in phrases such as “unload”, “gets it out of your system” and as described by one mother:

If I didn’t have friends that I could discuss it with, I’m sure I would have bottled things up more and worry more. I found that discussing it with friends was an outlet and I think it was definitely a process I needed to go through from when she was diagnosed to accepting it and not worry about it anymore.

Problem-solving

Parents are often required to be pro-active in their problem-solving and to relentlessly negotiate for their child’s needs. Problem solving was positioned as a helpful aspect of adjustment. As one mother declared, “no I’m not going to lay down and say it’s all terrible and he’s going to struggle with this; we’ll do what we can to be pro-active about it”. In particular, parents spoke about being assertive to secure appointments and resources for their child and as described by one mother “I’ve also learnt that you had to push. I’ve learnt that unfortunately if you just say ‘okay yes I’ll wait 7 months for an appointment’, you’re left to wait”. Parents highlighted the need to negotiate additional resources at school even when staff were not necessarily understanding of requests for further support in learning. One mother emphasized the importance of being assertive in spite of the discomfit:

And being proactive about it even when it doesn’t feel good. School systems are not easy systems to manage at the best of times. There were days when I felt like “here she comes again”. I know staff think that way because I’ve been on the other side. But to go well I’m the only person … well not just me, I mean [husband] and I are the only people who can do that for [son].

Mothers appeared to derive a sense of accomplishment through their efforts to pave the most favourable path for their child’s future.

Information-seeking was found to be empowering because it improved understanding of seizure scenarios and increased their sense of control over the situation. As articulated by one mother “having information helped me feel more in control so I was more prepared if something was to happen”. A few mothers described feeling overwhelmed by the amount of information on the internet and worries being exacerbated as they learnt more about the condition but the majority of parents preferred having a comprehensive understanding of epilepsy.

Time to self

When a child has an ongoing health condition, it is not uncommon for parents to neglect their own self-care to ensure maximum time and energy is available to meet the needs of their child. As difficult as it was to spend time away from their child, mothers found it invigorating to engage in independent activities outside of the family. One mother proposed that it was necessary for parents to look after their own psychological well-being before they can effectively care for their family:

The girls were little and everything was about them but just doing that [art lessons] and thinking I can do things for myself was probably the deciding factor. I need to do things for myself and if I don’t do that then I’m not good to anyone else.

When parents reached such a realization they became more willing to schedule in enjoyable activities for themselves or return to work. Work was seen by one mother as an avenue in which personal identity could be restored, “working outside is important because it gives you value. It’s value because it’s something that you’re doing that is not related to medication or his condition”. Another mother emphasized the futility of giving up work for her child arguing:

I can sit at home for the next 5 years waiting for a phone-call from school … and that’s a what if. What if it happens. That’s fine, I’ll just leave work. So I go to work to keep myself busy.

Mothers who have engaged in enjoyable activities or resumed work found it beneficial in the long-term in preserving their well-being and also in re-energizing their ability to continue the carer role.

Speaking with other parents

Although parents did not actively seek out other families with epilepsy for support or advice, when chance encounters did transpire, mothers found such conversations to be both informative and reassuring. Mothers reported limits of their social support network in providing comfort: “as much as you talk to other people in your bubble of life, ‘okay this is my child and he has epilepsy’, they don’t really understand the experience you’re going through”. Meanwhile an easy connection could be established with other parents whose experiences both parallel and resonated with their own:

It makes me feel more, I hate the word normal but a bit more less isolated. A bit more less that you’re the only person who’s going through this. And you can relate, you know what I mean? When someone says “my daughter has epilepsy”, its like ohhhh, that connection in a way.

One mother in particular wished she had the opportunity to speak at length with another parent, believing that it would have inspired hope:

I’d like to talk to someone who can say actually they did get better, they went on this medication and … just go through the same thing that I was going through so in the end I know it’ll get better. Because when you believe that things aren’t going to get better, you want someone to say, “oh they will, they definitely will”.

The implication is that communicating with someone further down the journey of management would have bolstered parents’ morale and increased confidence in their own ability to survive the diagnosis. Parents therefore acknowledged benefits from communicating with parents of similar backgrounds that included a reduced sense of isolation, a shift in the perceived normality of epilepsy and an uplifting feeling of hope.

Theoretical discussion of identified themes for coping behaviours

Information-seeking, problem-solving and time to self have been recognized in the literature as effective coping strategies that offset the intensity of the carer experience (Hummelinck & Pollock, 2006; Peck & Lillibridge, 2005). Previous research has observed ambivalence in some parents who resist investigating the epilepsy condition for fear of encountering unfavourable facts that may exacerbate familial stress (Hummelinck & Pollock, 2006; Peck & Lillibridge, 2005). Parents from this sample however contended that information seeking was pertinent to their adjustment and in overturning feelings of uncertainty and helplessness.

The theme of emotional ventilation is consistent with previous findings that parents who are open about their emotions often achieve better outcomes in adjustment than their counterparts (Chapieski et al., 2005). However, one qualitative study on paternal experiences found salient gendered accounts of coping where participants argued that gender stereotypes was an intractable barrier to them exploring or expressing their emotions the way women do (Ware & Raval, 2007).

Mothers spoke positively of conversations with similar parents but despite their informative and reassuring value, there appear to be no studies that have specifically explored the protective effects that interactions with similar parents have on parental adjustment. It is possible that parents may be deterred by the perceived inaccessibility of other parents or the onerous task of contacting a family. As a result, parents may not immediately consider communication with other parents as a feasible coping strategy.

Conclusion

This study is unique in its focused exploration of the cognitions and coping behaviours exercised by mothers as they adjust to the experience of caring for a child with epilepsy. Mothers provided rich, detailed reports of their experiences to reveal thinking and behavioural patterns that promoted adaptation. To effectively manage the emotional symptomatology, parents developed protective cognitive appraisals that sustained a positive outlook (normalizing, positive comparisons, hope, finding meaning) and contained worries related to care management and future risks (ceding control, living one day at a time). Parents demonstrated cognitive flexibility by re-structuring pre-conceived meanings and expectations to better accommodate the changes precipitated by the diagnosis. It was apparent that pro-active behaviours such as information-seeking and problem-solving had a dual effect of reducing the uncertainty of the epilepsy trajectory and also providing a sense of mastery to increase parental perceptions of control. Intense emotions tend to compromise rational decision-making and some parents specified emotional ventilation as necessary in regulating their emotions so that they can adequately plan for their family’s future. While self-care was described as a luxury, it was also presented as a buffer against stress and was an opportunity for mothers to re-build a personal identity and feel accomplished outside the carer role. Lastly, conversations with parents in comparable situations were valued for perceived benefits of experiential advice, increased sense of normality and a feeling of hope that they too will survive the epilepsy as others did.

Clinical implications

The mothers of this sample certainly demonstrated a promising ability to self-regulate psychological symptoms but adjustment timeframes were variable and for some, many years had elapsed before an enduring sense of normality was attained by the family. According to the Risk-Resistance Model of adjustment (Wallander & Varni, 1992), effective stress-processing significantly buffers against illness-related stress and in some cases even eclipses the effects of disease parameters in predicting parental adjustment. It is then speculated that parents with delayed onset of adjustment may have tapped into helpful coping strategies later in the course of epilepsy management or under-utilized protective cognitive appraisals or coping behaviours. As noted with this particular sample, many parents emphasized medication success and lived experience as primary factors in their adjustment. It is a concern that parents unaware of their own ability to process high levels of stress are at increased risk of feeling helpless, particularly if they believe that situational factors such as seizure control and lived experience are pre-requisites to stress reduction.

There is a role for health professionals to provide psycho-education on the diverse strategies successfully trialled by other parents and to support parents’ attempts to implement such strategies. Since stabilization of child’s epilepsy and effective incorporation of new family roles and care routines are priorities following diagnosis, parents are likely to benefit most from formal practical aid and strategies to deal with procedural stress in this initial stage. Many mothers were surprised at the emotional upheaval experienced so illustrating typical reactions of a family going through epilepsy with proposed methods to manage the emotional and physiological symptoms may help prepare parents for the changes ahead. This is particularly important since uncertainty and loss of control is known to elevate stress (Silver et al., 1995).

While mothers spoke positively of interactions with parents of similar pediatric illness backgrounds, for the most part they relied on fortuitous encounters. Considering the emotional benefits, more opportunities for parents to converse with other role-model families should be facilitated. Illness-specific group programmes targeting child and parental adjustment to chronic illness have been developed in the past (see Snead et al., 2004) but parents may also appreciate informal one-on-one contact with other parents. An accessible network of contacts or support group can be a strong resource of experiential information and inspiration for parents confronted with newly diagnosed epilepsy.

Parents with significant psychological sequelae may require clinical interventions beyond standard psycho-education. Cognitive re-structuring techniques that encourage positive appraisals (normalizing, positive comparisons and meaningful interpretations) to reduce debilitating perceptions of helplessness can bolster parent’s morale and future outlook. A behavioural activation programme can be a means for parents to initiate valued and goal-oriented activities to prevent their personal identity from being consumed by the carer role. Practical strategies to minimize worries can serve to address the anxiety and hyper-vigilance that appears common to mothers following diagnosis. Parents who struggle in emotional regulation may benefit from practicing emotional expressiveness while assertiveness training and problem solving skills may be relevant for those who feel ill-equipped to negotiate resources for their child.

Methodological issues

The original stringent selection criteria was intended to provide a more homogenous sample of parents but the criteria was subsequently expanded due to difficulties with recruitment. As a result, a few of the mothers interviewed were not merely dealing with epilepsy but also with co-morbid pediatric illness. There was insufficient data for a generalizable comparison between the groups but with this particular subset of mothers, epilepsy was perceived as minor compared to preceding genetic conditions and the diagnosis did not significantly aggravate existing psychological sequelae. To increase the likelihood of potential participants, the child’s age range and the time since diagnosis was extended. The relevant issues are dependent upon the child’s developmental stage and as the resultant sample consisted of parents with children diagnosed from the age of 1 to 14, it is unsurprising that the content of worries and challenges was particularly diverse in this study. Another concern was that a period of 5 years may obscure memories of the adjustment process and resulted in parents minimizing the impact of the diagnosis or their role in facilitating adjustment.

Since the dataset of this study represents those parents willing to share their experiences, there is the possibility that the sample is biased towards mothers who are well-adjusted or those who place a premium on psychology. Mothers may also have felt compelled to describe themselves in a particular, mostly positive way to manage some degree of social desirability in the interview context. Although invitations were directed to both genders, it was unfortunate that the lack of interest from fathers resulted in a study that is purely based on maternal accounts of the phenomenon. This is in keeping with the stereotype that fathers are less prepared to discuss emotional aspects of their experiences and with the observation that epilepsy management and contact with medical services tend to be the domain of mothers. This study can thus only propose to provide a picture of the adjustment and coping strategies of mothers and may not be generalizable to the experiences of fathers or representative of the parental dyad.

Further theoretical research

A strength of this study is its focused approach in extracting themes related to protective cognitive appraisals and coping behaviours. Few studies in the literature specifically explore resilience factors against pediatric illness and how they manifest in maternal thought and behavioural patterns. Within the Risk-Resistance framework, the stress-processing factor appeared most accessible to parents because it was less contingent upon entrenched characteristics of the parent or environmental factors and as such was deemed highly amenable to change and having the most potential for clinical intervention. However, other proposed sources of resilience of personal factors (temperament, competence, problem-solving ability) and social-ecological factors (family environment/social support) are argued to affect stress-processing and certainly have an important role in determining parental adjustment. Future research looking specifically at these areas of parents’ experiences will further build upon the Risk-Resistance Model.²

Footnotes

Acknowledgements

We would like to express our gratitude to The Epilepsy Centre of South Australia for supporting this study. In particular, we would like to thank Mark Francis (Client Services Manager) for his time and work in promoting this project and for his ongoing dedication to improving the needs of children and families dealing with epilepsy.

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Notes

Author biographies

Sylvia Nguyen is a registered Psychologist and has National Endorsement as a Clinical Psychologist with the Psychology Board of Australia. She completed her Masters in Clinical Psychology from the University of Adelaide and is currently a candidate for the Doctor of Clinical Neuropsychology at Monash University. At present, she is employed at the Monash-Epworth Rehabilitation Research Centre and has particular interests in psychological adjustment to Epilepsy and Traumatic Brain Injury.

Mark Pertini is Head of the Department of Psychological Medicine at the Women’s and Children’s Hospital, South Australia. He is a member of the College of Clinical Neuropsychology and Clinical Psychology with the Australian Psychological Society and has National Endorsement as a Clinical Neuropsychologist and Clinical Psychologist with the Psychology Board of Australia. He has a particular interest in the neuropsychological and psycho-social issues that impact children with epilepsy.

Lisa Kettler is a Visiting Research Fellow in Psychology at the University of Adelaide, where she is involved in research and postgraduate training. She is also currently the College Psychologist for Trinity College, a multi-campus, multi-school co-educational College in Adelaide, South Australia. Lisa is member of the College of Clinical Psychology with the Australian Psychological Society and has National Endorsement as a Clinical Psychologist with the Psychology Board of Australia. She has broad research interests in the areas of clinical, health and developmental psychology.

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