Early Parental Experiences of Obstetric Brachial Plexus Palsy

INTRODUCTION

Obstetric brachial plexus palsy (OBPP) varies in the number of nerve roots involved and the degree to which each is damaged. In the more severe situation, nerve roots are avulsed from the spine irreparably, whilst the mildest degree of injury is a rapidly recovering loss of conductivity without structural change. The majority of cases achieve satisfactory and useful recovery without surgical intervention. The reported incidence of “complete” recovery varies greatly (Kay, 1998). In addition to the functional difficulties, a recent study (Bellew et al., 2000) has revealed developmental and behavioural problems in these children, particularly in those with more severe injuries. These effects were independent of the general condition of the child at birth, as indicated by their Apgar scores, and were also not simply attributable to the fact that some of the children had undergone surgery. Children with OBPP and their families, therefore, face functional, psychological and social difficulties as well as the need for physiotherapy and possibly surgery.

The birth of a child with a disability is traumatic for the parents because of the discrepancy between the baby who was expected and planned for, and the baby who arrived. Their distress can be aggravated because they are usually in the company of other new parents celebrating the safe arrival of their “perfect babies”. It has been argued that the parental response to such an event closely resembles the bereavement response associated with loss and death (Bicknell, 1983; Gath, 1977; Kerr and McIntosh, 1998; Solnit and Stark, 1961). This was described by Bicknell (1983) as a “modified” bereavement response, in which the parents mourn for the loss of the anticipated perfect baby, before they can accept and form an attachment with the imperfect one. She describes “the stages of the bereavement response as it is seen in parents who are told the diagnosis of handicap in their child” (shock, panic, denial, grief, guilt, anger, bargaining, acceptance, ego-centred work and ‘other’ centred work). An important difference between this and the response to the death of a child is that the continued presence of the child has a “daily impact” which is “unrelenting” (Bicknell, 1983; Solnit and Stark, 1961). With a birth injury such as OBPP, there is the added burden of knowing that the baby was perfect up until the point of delivery.

The way in which an initial diagnosis is communicated to the parents influences the bereavement reaction, and can positively or negatively affect the way in which parents adjust to the situation and treat their child in the short and long term (Cunningham and Sloper, 1977; Kerr and McIntosh, 1998; Quine and Pahl, 1987; Robb, 1999; Strauss et al., 1995). Thus, the person delivering the “bad news” has a critical role in modulating the parental response. A consensus has emerged regarding the best way to break bad news to parents (Cottrell and Summers, 1990; Robb, 1999) but, despite this understanding, studies of many different patient populations (e.g. Down’s syndrome, cerebral palsy, spina bifida, degenerative disorders, learning difficulties of unknown origin and congenital limb deficiency) continue to document high levels of dissatisfaction with the way in which bad news is communicated (Kerr and McIntosh, 1988; Quine and Pahl, 1987; Quine and Rutter, 1994; Sloper and Turner, 1993).

An alternative view is that parental dissatisfaction with the disclosure of bad news relates to distress at the realization that their child has a problem and a natural tendency to want to blame someone. The aim of the current study was to explore these competing interpretations with the parents of 44 children with OBPP and determine whether poor communication or reactive grief plays the more important role in determining parental reaction.

SUBJECTS AND METHOD

RESULTS

Figs 1–3 present the questionnaire results for the surgical and non-surgical groups and for the sample as a whole. Comparison of data from the surgical and non-surgical groups revealed strikingly similar profiles of responses, though formal analysis was not possible due to the small sample size. The groups also did not differ significantly in terms of the number of parents who added comments to the questionnaire.

DISCUSSION

The data confirmed parental distress at the birth of a child with OBPP. In the majority of cases the mothers gave birth to large babies and experienced difficult births, as is typical in this population. For both the surgical and non-surgical groups, the adjectives that were most frequently chosen from the list to describe their response to the birth injury and the ensuing diagnosis corresponded closely to the bereavement response described by Bicknell (1983).

The data also revealed dissatisfaction with how their early experiences were managed by the professionals involved. Support was not found for the reactive grief hypothesis, but support was found for problems in the communication of bad news. Comparison of the parental responses in the severely injured group with those in the mildly injured group revealed similar levels of dissatisfaction. Had the severely injured group shown higher levels of dissatisfaction then this would have been consistent with the dissatisfaction being attributable to the bereavement reaction, the fact that their child had a problem and a need to blame someone. The fact that there was dissatisfaction regardless of the severity of the initial injury and subsequent recovery, suggests either that degree of distress is not related to the degree of disability or that the dissatisfaction was due to factors other than a reaction to their child having a problem. In support of the latter the parents provided details of problems with communication.

Many of the parents felt that the delivery had been handled “badly” or “very badly” by the staff attending them and it would be reasonable to suppose that this would add to the trauma of the delivery. As would be expected (Quine and Pahl, 1986; Strauss et al., 1995), the initial diagnosis was usually communicated by a medically qualified member of staff, although other allied professions were sometimes involved. In some cases this was reported to have been handled well. However, there was a high level of dissatisfaction with the communication of the initial diagnosis and accompanying information, and a number of the additional comments that were made, related to this issue.

The comments made about communication style by the OBPP parents were very similar to the problems reported by Quine and Rutter (1994) when they questioned the parents of children with mental and physical disabilities about the time of disclosure, satisfaction with communication, the doctor’s affective behaviour and their understanding and memory of the information they had received. A total of 58% of their sample was dissatisfied or very dissatisfied and they found that ‘‘the most important predictor of parental satisfaction was the doctor’s affective behaviour” (whether the doctor had a sympathetic manner, understood the mother’s concern and was direct, approachable and a good communicator). Problems encountered by their sample included news being given in a “blunt” unsympathetic way, lack of advice or information regarding the future, “delay, denial and evasion at the hospital”, and parental anxieties being disregarded.

The Quine and Rutter (1994) study also revealed an association between the age of the child at diagnosis and satisfaction. Those parents who could be given a diagnosis early on (e.g. Down’s syndrome can be recognized and confirmed easily at birth, and prognosis then discussed) were more satisfied than those with emerging conditions of uncertain aetiology who spent considerable time (in some cases years) “waiting and worrying” (Quine and Pahl, 1986, 1987; Quine and Rutter, 1994). With OBPP the disability may not be immediately apparent at birth and there is necessarily an element of waiting before the extent of recovery is revealed. As such the diagnosis is like those which are evolutionary or uncertain in nature and, in accordance with these studies, more likely to be associated with dissatisfaction. In addition, a number of the parents’ comments were complaints about delays in being told about their child’s difficulties. However, it was clear from the current data that neither communication style nor the evolutionary nature of the diagnosis could entirely account for the dissatisfaction experienced by the parents of the OBPP children. Much of the concern related to the provision of information.

Korsch et al. (1968) showed that parents want information and an explanation of their child’s disease and what caused it. In the Quine and Rutter (1994) study, 74% of parents said that they wanted more information and that information had been reluctantly given or actively withheld. Other studies (Cunningham et al., 1984; Lynch and Staloch, 1988) also report lack of information, and how this can elevate parental concerns, particularly about the future (Kerr and McIntosh, 1998). In a study by Sloper and Turner (1993), the provision of information emerged as a more important factor than the professionals’ manner or structural aspects of the disclosure (such as the time of telling and both parents being present): parents would forgive delays or other departures from guidelines if they were given a reason.

Many of the comments made by the OBPP parents confirmed the importance of information for the period soon after delivery. Only 16 parents reported that they had had too little information overall, but this perhaps reflects the fact that by the time they completed the questionnaire, they had already been within a specialist service for some time. However, an unanticipated but clear factor that strongly emerged was that they were dissatisfied with the quality of the information and that in many cases they perceived that they were given misinformation.

The qualitative data provided by the parents told this with an impact that percentages never could. In addition it should be noted that these comments were made on average 2 years after the children were born and their parents had first started communicating with professionals about their babies. Despite the length of time, the parents’ early feelings and recall of what had been said to them appeared to have retained considerable vividness, importance and impact, as has previously been noted regarding the communication of “bad news” (Kerr and McIntosh, 1998; Quine and Pahl, 1987; Strauss et al., 1995). It strongly emerged that there is a perceived lack of knowledge about OBPP by many of the professionals in the front line, and that as a result parents perceive that they are left not understanding and not knowing what to expect, and struggling to find out what they need to know. At its worst, parents perceived that were given misinformation that confused or misled them, particularly about prognosis, which it transpired was either overly positive, overly negative, or contradictory.

Cottrell and Summers (1990) recognized that it is easier to get disclosure communication right when the diagnosis is straightforward, but argue that the same rules of good communication apply with evolutionary diagnoses and that reassurance that is later revealed to be inaccurate leads to bitterness (Cunningham and Sloper, 1977). Their study suggested guidelines for communication and management with emerging or uncertain conditions and argued that the parents are the best source of advice in this respect. They found the level of agreement amongst parents striking, and this was mirrored by the OBPP parents.

In summary, studies such as Cottrell and Summers (1990) and Robb (1999) suggest that parents should be informed as soon as a disability is suspected, even if the diagnosis is unknown. As with other conditions they should be told together, in privacy, with the child and a familiar professional present. Respect should be given to cultural considerations, the baby should be held by the informant and the news should be given in a direct but sympathetic and approachable manner. Parents appreciate honesty, with inappropriately positive messages experienced as detrimentally as inappropriately negative ones. An adequate level of information is needed, in language that is easy to understand and remember (via an interpreter if necessary). The child should be portrayed positively as well as negatively with some positive information heard, and with information personalized to the family. Information should be both written and verbal, with sufficient time to understand (20–40 min). There should be adequate opportunity to ask questions, and a follow up appointment a few days later, as parents report that not much is retained at the first interview because of shock. With an evolutionary diagnosis regular review appointments are essential to keep parents informed as the diagnosis emerges. Breaking bad news is not a “one off” event but rather should be an ongoing process, sometimes lasting several years, and involving the multidisciplinary team. Parents can cope with a delay in diagnosis as long as there are reasons for the delay and they are kept informed of what is happening and why. They also do not want to be informed in vague terms but want to know details of how their child will be affected. Parents additionally want practical information on what they can do to help, thus giving them some hope even when they realize the disability will be permanent. There should be access and referral to other professionals and multidisciplinary teams who can provide information and practical support as soon as possible. To avoid problems of overload with information where there are many professionals involved, sometimes leading to conflicting advice, a key worker system is advocated, in which one individual would co-ordinate the whole system.

Parental dissatisfaction with diagnosis giving is not inevitable if recommended guidelines are followed (Cunningham et al., 1984; Krahn et al., 1993). Further training for health professionals and protocols for the breaking of bad news have been recommended (Kerr and McIntosh, 1998; Robb, 1999). This may involve a move away from the traditionally taught model of “clinical detachment” and maintenance of emotional neutrality which, while protecting the clinician from distress and anxiety, may give an impression of lack of sympathy (Quine and Pahl, 1987). It may also involve a shift in the typical power relationship between doctor and patient (Quine and Pahl, 1987).

The parents in the Cottrell and Summers (1990) study, were also very keen on the provision of support groups and thought that this should particularly be available for parents of children with emerging conditions. This was similarly the case in a study of parents of children with cleft lip and palate (Strauss et al., 1995) in which 67% expressed a strong desire for such contacts (though only 16% had been referred). The importance of parent-to-parent contact has certainly been borne out by the success of the Erbs Palsy Group as a source of first hand experience and support. It is striking that whereas the quality of information from professionals was so severely criticized by the current sample of parents, the results of a questionnaire study recently conducted by the Erbs Palsy Group (1999) regarding their service yielded very different results. With a sample of 348 responders, the quality of information provided by them was rated as “satisfactory” by 19% and as “very good” by 73%. Only 1% thought it could be improved, and none thought it was “poor”. It should also be noted that they provide written as well as verbal information. These data, indicate how much better the information giving to parents by professionals could be.

Furthermore, as the current study revealed that OBPP is not understood by many of the professionals who are first in contact with families, a valuable early intervention would be that every maternity unit has leaflets from the Erbs Palsy Group. The group has recently sent a mail shot to every one of 2937 hospital Paediatric Units in the country and it is hoped that this will better inform both parents and professionals. Teams treating OBBP should also routinely inform families of the group’s existence.

It is also of paramount importance that early referral is made to a specialist centre which has an experienced multidisciplinary team seeing a large number of patients. They can then begin the process of assessing the child from birth, and giving information on diagnosis, prognosis and the physiotherapy input that parents need to undertake from birth. They will also provide ongoing support for the family with the grieving process, decision-making processes and aspects of long-term adjustment and attachment. In this way it is to be hoped that the experiences reported in this paper will not continue to be repeated.