‘We are dealing with it the best we can’: Exploring parents’ attributions regarding their child’s physical disability using the ‘Four Ws’ framework

Development of the Four Ws framework

In order to ensure that our empirical study was strongly based on the extensive literature on cognitions outlined above, we used the method described by J.M. Morse and Mitcham (2002). This involves the development of a theoretically derived skeletal framework to initially scaffold the analysis of qualitative data. The scaffold can be adapted, or even dismantled, if necessary, in the light of those data. We sought to capture the essence of attribution theory by using a simple ‘Four Ws’ mnemonic: What, Who, Why and When, aimed at uncovering the kinds of attributions known to be more or less adaptive.

What concerns the nature of a problem as identified by a parent. Focusing on an unchangeable problem, such as continuing to seek a cure for an incurable condition, may be less adaptive than accepting the reality of the condition and focusing instead on unstable, potentially changeable, problems, such as the best ways to manage the condition. This opens up the possibility of having achievable goals, consistent with the literature on optimism (e.g. Aspinwall et al., 2001) and hope (Snyder, 2000).

Who relates to blame. Seeking to blame a doctor or oneself for the disability may be maladaptive (e.g. Hall et al., 1997). While attributing problems to chance is generally associated with pessimism (e.g. Seligman, 1991), clinical experience suggests that in the case of a child’s disability, believing that ‘It was pure chance, it could happen to anybody’ may be more adaptive than seeking to attribute blame.

Why something happened is also connected with blame and is central to attributions (Westen et al., 2006). A parent may hold a global, catastrophising attribution, such as ‘It happened because I am a total failure as a parent’ or a more adaptive specific one, such as ‘It is a genetic condition’ (see Mendola et al., 1990).

When relates to permanence (Seligman, 1991) or, in Abramson et al.’s (1978) terms, stability or instability. Even when a child’s disability is a permanent situation which cannot realistically be changed, parents may have attributions about future change, such as a cure centred on an unproven therapy. An example of a maladaptive temporal attribution might be ‘My life is always going to be full of problems because of this disability’, while an adaptive one might be ‘I will focus on one day at a time’.

Participants

Participants were 24 mothers and 12 fathers of children aged 10 years or younger registered with an Australian agency providing services to about 3000 children with a primary diagnosis of physical or severe and multiple disability. Most respondents (n = 29) were married, two in a de facto relationship, four separated and one single. Socio-economic status (SES) was low in 38.6%, with 40.7% middle SES and 20.7% high SES (Daniel, 1983). The mean age of the children was 6.05 years (standard deviation (SD) = 2.69 years), the majority were male (69.7%) and the main diagnosis was cerebral palsy (60.6%). Disability as rated by parents ranged from mild through moderate to severe, and about a third of the children used technological mobility aids such as wheelchairs. About 80% of the children had siblings.

Materials

The materials included semi-structured interview guide (Appendix 1), audio recorder and QSR NVivo 2.0 software. The questions in the interview guide were devised to provide opportunities for parents to discuss attributions in the context of issues that the literature and clinical experience indicated are important to parents, such as reactions to diagnosis and making decisions about whether to seek various forms of therapy (e.g. Schuengel et al., 2009). The decision to couch the questions in terms of advice to others was made on the basis of perceiving parents as experts. This method also had the advantage of being less threatening than asking direct questions about sensitive issues such as blame and anger.

Ethical considerations and author characteristics

Like many of the studies that have identified positive aspects of raising a child with a disability, we chose to use a qualitative method. Such methods are emancipatory rather than pathologising in nature (Goodley & Lawthom, 2005) and, in line with a Positive Psychology approach, we wanted to avoid casting parents in the role of ‘victims’. We explicitly respected parents as experts in bringing up a child with a disability, and therefore as people who might have wise advice to offer other parents with a newly diagnosed child. We aimed to elicit rich descriptions of parents’ attributions about their lives with their child, and to ‘. . . make sense of, or interpret, phenomena in terms of the meanings people bring to them’ (Denzin & Lincoln, 1994, p. 2).

Permission for the study was obtained from the relevant university ethics committee and from the agency providing disability services, as well as written parental consent. Parents were free not to answer any questions or to stop the interview and were told that there were no right or wrong answers.

The interviewer (the first author (M.Z.) was a clinical psychologist who was very experienced in working with such families and was motivated by emancipatory considerations; she was explicit to parents that their expertise may prove helpful for parents with newly diagnosed children. The second author (R.S.) was a PhD-qualified clinical psychologist with experience in providing paediatric psychology services and with wide experience in both qualitative and quantitative research methods in relation to children and adolescents with chronic conditions.

Procedure

Approximately 80 parents with a child aged 10 years or younger registered with the agency were selected using a stratified random sampling design; this entailed using a random number table to select potential participants within each of the five metropolitan areas serviced by the agency. The Chief Psychologist of the organisation mailed out information sheets and invitations, with a reminder 3 weeks later. The response rate was 45%. The researcher arranged to undertake the interviews at parents’ houses. Written informed consent was obtained, and parents were reminded that they could withdraw at any time and their participation or otherwise would not impact upon the services provided to them. Six interviews were with couples (with each member being individually asked each question) and the remaining interviews were with individual parents. After a preliminary explanation about the purpose of the study, the interview was carried out in accord with the interview schedule. Parents were thanked and given an opportunity to raise any further issues.

The interviews yielded 432 pages of transcript, which were introduced as documents into the qualitative analysis software program. Thematic analysis (Braun & Clarke, 2006) was carried out by M.Z., who was thoroughly familiar with the background literature on cognitions as well as with the client group. She studied each document line by line and made decisions regarding classifying each unit of text. Decisions were made concerning if, how and where the data fitted into the elements of the What, Who, Why, When framework, or whether new themes or subthemes needed to be created.

We used criteria for assessing rigour in qualitative inquiry as laid out by Sandelowski (1986). We acknowledge that she, and some other qualitative researchers, later rejected this approach as too aligned with quantitative methods. However, within our field of psychology, where qualitative research is still not well regarded, we have found this approach to have continued value in gaining acceptance of qualitative research. To check credibility, 15 of the interviewed parents were asked to give feedback on a 15-page written summary of the results, which confirmed accuracy and further clarified parents’ cognitions. Fittingness was established through individual feedback from nine mothers not involved in the study and a focus group with six more, who preferred to meet as a group to address the summary verbally. As no new issues arose, it appeared that saturation had been reached. The elite bias was avoided by the use of stratified random sampling. The holistic fallacy (over-regularising of results) was avoided by noting exceptions to patterns of findings, while auditability was achieved by keeping a clear audit trail. As a result of these procedures, we believe that confirmability was established.

‘What’ is the problem?

Five subthemes emerged: the disability, my life, my child’s life, specific issues and my child’s happiness. Given the subject of the interview, all the parents raised the disability as a problem, but this can be seen as a superordinate theme, with all parents raising at least one other problem as well. These could be distinguished cognitively.

Only one couple, who had rated their child’s disability as moderate, had ‘my life’ as their main focus. The mother said, ‘A major part of my life has been taken away from me because of some idiot doctor’. Consistent with the literature that such globalised cognitions are maladaptive, both parents had sought psychiatric help to deal with the trauma of their predicament and had no goal associated with it. It was a pervasive and generalised attribution.

‘My child’s life’ was similarly global and stable, but was a child-focused attribution about a ruined life. One mother said, ‘They’ve ruined his life’ and another reported that the child’s father was angry and blaming about their son’s eye condition, saying ‘What’s the point? Basically they’ve ruined my child’s life’.

The mother who reported this took a different view herself. She exemplified focusing on a specific issue, which the literature shows to be more adaptive: ‘I say well okay let’s fight it and see if there’s some operation that can be done. If we just leave it there’s no way he’s going to get any help’. Most parents identified some smaller, potentially changeable problems that were their current focus: ‘We are trying to get her to eat more. She does not eat enough at the moment’. In saying ‘at the moment’, this father saw the problem as not stable but temporary and changeable, and he articulated a specific goal. Consistent with previous findings that such attributions are more adaptive, some parents brought up examples of past successes in achieving goals associated with specific problems.

The final ‘What’ subtheme, of the ‘child’s happiness or self-esteem’, is illustrated by the mother who said ‘If he is happy which he is most of the time then I am happy for him. My main goal is to get him to be self-sufficient’. This child-centred category was often associated with personal growth comments and a reprioritising of one’s goals in life.

‘Who’ is to blame?

Four subthemes emerged here: I am to blame, other people, things and the supernatural. Some parents blamed themselves for their child’s disability, even if they knew this was not logical, and all these reported great sadness and guilt. One mother said, ‘No it was all my fault because why could other women carry a child full term and I couldn’t?’ (Interviewer: ‘Do you still blame yourself?’) ‘Yes that will never change until the day I die’. She therefore saw her guilt as permanent and unchangeable. Some wondered whether they were capable of having a child without a disability. One father said, ‘Can I be honest? Having had two children with disabilities, it makes me wonder if it’s possible for me to ever have a child that is normal. I will never know, because we won’t ever have any more. It’s too hard’. The strength of feeling was expressed by one mother, ‘. . . the guilt the guilt the guilt . . .’.

Some parents blamed doctors and were angry, especially if they considered the disability or a related problem as preventable, if they had warned the doctors but felt ignored or experienced a lack of compassion or caring treatment after the event:

The same father said,

[staff were] expecting to examine her without washing their hands . . . when we got down there [to intensive care] they knew nothing about her . . . they had nobody there who could do suction . . . we were doing suction ourselves on her [as she was choking] and we didn’t have a clue what we were doing.

Sometimes parents lost faith in the medical system and felt let down, with an associated increased perception of their own judgements and abilities, but most did not generalise, only blaming the staff they felt directly responsible. Only one mother blamed something else rather than someone: ‘Sometimes you just think it’s a cruel world’. This is a very global and negative attribution.

In contrast to the strong negative emotions of those who blamed themselves or others, when parents had a sense that there was a supernatural force, a ‘bigger picture’ to their situation, it gave them comfort and was often tied to a sense of being chosen and resilient. As one mother said, ‘But God only sends us what we can handle’.

‘Why’ did it happen?

Five subthemes emerged here: an event or experience, did not think about it, focus on the blame and who’s responsible, luck/chance and supernatural.

A specific event was often seen as the reason for the disability, such as when a mother said, ‘. . . scarring on the brain was caused during birth’. Sometimes, it was a relief from self-blame: ‘. . . the doctor said to me . . . you could not have done anything when you were pregnant. It happens the moment the sperm meets the egg. And for me that was a relief. It wasn’t me’.

Some parents never thought about why it happened, especially if the child’s condition was a gradual realisation, and there was then acceptance and no associated emotion. As a father said, ‘. . . it wasn’t something that we got hit with’. Having a diagnosis or label gave the parents a foundation from which to orientate themselves for the future.

Parents who focused on blaming someone sometimes gave a reason such as a doctor not taking due care, and legal proceedings might then be in train: ‘Do you think this would have happened if it was his child?’ This contrasted with other parents who recognised that doctors make mistakes; as one father said, ‘Doctors are only human’, and ‘Some people are looking to blame someone else . . . Like I said, get over it . . .’.

Many parents concluded that there was no reason for the disability, but it was chance. One mother said, ‘. . . it can happen to anybody. You are not a certain type of person’, while a father said, ‘It’s just one of life’s turns, really’. For such parents, although they faced challenges, there was a sense of proceeding with life. One father said, ‘I am quite confident with thinking there is nothing we could do and we are dealing with it the best we can’. Interestingly, although there is a lack of perceived control over the cause, and the disability itself is perceived as stable and global, parents such as these were not pessimistic but positive, being realistic about what they could change:

Acceptance that a disability is permanent does not equate to being hopeless, as exemplified by the father who said,

Well if it’s [physiotherapy] going to help them move better at least it’s a first step in the process of possibly making things better. Most physical disabilities can’t be cured . . . maybe some improvement will be made to change the physio and the doctor’s mind . . . go ahead with anything that will improve your child’s quality of life.

For many other parents, a supernatural explanation was the reason why the disability occurred, and belief systems might be changed. One father said, ‘[My child] has chosen us’. One mother said, ‘Parents are only given what they can cope with’, while another said, ‘I don’t know if I believe in God anymore’.

‘When’: the time dimension

The time dimension proved complex. Six subthemes were identified: painful past, lament the loss, lessons learned, the present as changeable or unchangeable, the future unknown and future change. The last of these, future change, had 10 sub-subthemes, as described later.

Without exception, parents expressed some pain and sadness recalling their past experiences, including the initial diagnosis, although most focused on positive aspects as well:

Even parents who focused on their child’s abilities still deeply felt for what their child could not do, especially if the child was wishful:

Some parents gave examples of life lessons they had learned:

There was acknowledgement that the past has gone and the present must be addressed, and that perspectives change:

Some had come to terms with the unchangeability of their child’s condition:

Some chose to focus on the changeable rather than the past:

Many parents were concerned about their child’s unknown future and happiness:

These cognitions were often associated with being very upset. Many parents adopted a strategy of taking things one day at a time, to deal with this unknown future.

Future change emerged as a major subtheme, with 10 sub-subthemes, some of which related to concepts apparent in the literature. Five concerned optimism and pessimism. These were as follows: pessimism, unrealistic optimism, strategic optimism, defensive pessimism and optimism. The other five were as follows: child focus, goal focus, worry, perceived control and hope.

Parents who tended to use their life or their child’s life as a problem focus tended also to be pessimistic, low on hope and with few defined goals:

While a few parents were willing to give anything a try, most were suspicious or contemptuous of miracle cures, that is, they recognised unrealistic optimism but did not use it themselves:

Some displayed strategic optimism, like the mother who said, ‘Ask for all the information . . . knowing the best case scenario . . . integrate it slowly into their life . . . do things so that mentally you’ve adjusted to it . . .’. Another example was a mother who spontaneously described herself as an optimist but still held anger about her child’s disability: ‘I would learn to compartmentalise [your anger] and put it aside so that it wasn’t interfering in your life and your child’s life’. Optimistic parents set realistic and achievable goals:

There were a few examples of using the strategy of defensive pessimism, or setting low expectations to cushion the blow of failure:

Parents whose major focus was their child rather than themselves (child-focused) showed contentment:

Concerning goals, no parents had finding a cure as their main focus. One parent with pessimistic thinking had a primary goal of winning a court case with the hospital to be able to finance the child’s future. The goal of many parents was focused on the child’s happiness or quality of life:

Worry about the future was expressed by numbers of parents:

This needs to be distinguished from pessimism and anxiety, neither of which was evident in this mother. Her worries were realistic given the nature of her son’s severe disabilities. She was less worried about her other child, whose disability was more moderate.

Many parents reported exerting a lot of control in the direction their child’s life was taking, but a lack of control was evident when the child was very young and at times of transition such as starting school, or in relation to health professions. A sense of powerlessness in relation to the latter could lead to anger.

The doctor was thwarting this father’s goal of caring for his child as he could not cure her.

Hope was consistently held in the background by parents while they focused on immediate achievable goals:

Other themes

A numbers of other themes emerged. Space does not permit a detailed discussion here, but a few points are noteworthy in considering parental cognitions and adaptation. ‘Catastrophising’, which is closely linked with depression (Beck, 1976), was expressed by a few very upset parents; they were on the verge of giving up on the future, with one father having considered killing himself and his child in the past. Also, the cognitive strategy of self-reframing was mentioned by some parents, when they described how their own perspectives had changed in more helpful directions, such as letting go of blame and concentrating more on their child, or changing from being inward-looking to getting involved in social activities. Finally, much material emerged on emotions, and negative emotions generally (not just at diagnosis) were associated with themes such as pessimism, worry and a self-focus, and positive emotions with themes such as optimism, defensive pessimism, hope, a child focus, personal evolution and self-reframing.