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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

Informing Families

Informing Families Consultation and Research Report There is a little more diversity of opinion in relation to the people present during disclosure. It is agreed that parents should be told together (Hedov et al, 2002; Pearson et al, 1999; Price et al, 2006). However the question of whether the child should be with the parents while the diagnosis is communicated is one area requiring further analysis. Some emphasise the positive outcomes of having the child present; Cunningham states in relation to the diagnosis of Downs Syndrome; Having the child present allows the professional to convey value and worth by touching and referring to the baby. (Cunningham, 1994, p.91) Others note the risk that the absence of the child may even lead to parents thinking that the child is dead or dying, if diagnosis occurs soon after birth (Doran, 1999). However Price et al (2006) state that uncertainty exists about the presence of the child during the meeting; …it may appear inappropriate given the reactions experienced by the parents at the time of being told the bad news… Although debate continues and a distinct lack of evidence around this question is apparent, many health professionals choose not to include the child in the initial discussion, giving parents time to assimilate their feelings and vent their emotions, before talking to their child. (Pg. 116) A trend that does appear to be consistent throughout this debate is the suggestion that the baby should be present if the diagnosis takes place close to birth, while the parents of an older child may benefit from the opportunity to absorb the news and openly express emotions and reactions without the child being present. Many studies indicate that a support person should accompany the professional who discloses the diagnosis of the disability (Gatford, 2001; Phipps & Cuthill, 2002). Ideally the support person should be known to the family (Girgis & Sanson-Fisher, 1998). The presence of a support person can have a twofold benefit in supporting parents and assisting the professional giving the news. ‘[The support person]…may take notes on behalf of the parents during the meeting which may be helpful for parents in reviewing the main points covered at a later stage’ (Price et al, 2006 p.118). If possible the additional person present at disclosure should have a role in supporting the family that will continue beyond the initial telling, as their presence will strongly emphasise to the parent that the disclosure is merely the beginning of a supportive process and that there are positive things to be done (Cunningham, 1994). Recommendations from the Literature ● The news should be given in a private, comfortable setting. ● The news should be given by an appropriately trained professional with knowledge of the guidelines. It is recommended that a second professional, preferably known to the family, should be present to support the family after initial consultation. No additional personnel should be present. ● Both parents should be present. If it is only possible to have one parent present, the option should be given to have another family member or friend present to provide support. When a parent hears the news alone, arrangements should be made as soon as possible to inform the other parent and close family members. ● If the diagnosis takes place close to birth, parents should be given some time with the baby before any disclosure takes place. This can help with the bonding process and allow the parents to identify with their child first and the disability as secondary. ● When diagnosis takes place close to birth, the baby should be present if possible. If it is not possible, the baby should be referred to in a respectful way at all times. The child’s name should be used; it is important that professionals see the child first and their disability second. When sharing the news of the additional needs of an older child consideration should be given as to whether they should be present. (If the baby cannot be present, the parents should first be sensitively reassured that the difficult news to be imparted does not mean that their child has died or is dying*) 6 ● Time and space should be available to the family to reflect, and they should be able to meet with a member of the team if they wish. The ERHA report recommends that the hospital should explore the possibility of offering overnight stay to the father (or person of the mother’s choice). 6 The presence of an asterisk* beside a recommendation, or a section of a recommendation contained in brackets, indicates that the recommendation emerged from the literature but was not specifically present in the ERHA or RFTS reports. 29 2. LITERATURE REVIEW

Informing Families Consultation and Research Report 2.5.2. Communication Themes As discussed above, Sloper and Turner (1993) found the manner in which the diagnosis is communicated to be a key determinant of parental satisfaction. Empathy, sensitivity, and honesty have been mentioned in a number of studies as important elements of positive disclosure practice (Girgis & Sanson-Fisher, 1999; Hatton et al, 2003; Price et al, 2006). In discussing empathetic communication, Davies (2003) describes it as the ability of a clinician to understand needs from a parent’s perspective and thus to respond sensitively to those needs. A lack of sensitivity can have a range of negative consequences (Fallowfield & Jenkins, 2004), including a delay in diagnosis if insensitivity leads to the dismissal of parental concerns (Leonard, 1999; Davies, 2003). An insensitive approach increases the distress of recipients of bad news, may exert a lasting impact on their ability to adapt and adjust, and can lead to anger and an increased risk of litigation. (Fallowfield & Jenkins, 2004, p. 312) The literature stresses the need for those communicating the diagnosis to be aware that the responses of parents to the diagnosis of their child’s disability and the amount of information that parents are able to absorb and understand, are affected by many factors. These factors include previous family history; educational, socio-ecomonic, cultural and linguistic background; and the shock that many parents will experience (Ormond et al, 2003, Gatford, 2001). Parents will be likely to make use of a variety of coping mechanisms, including at one end of the spectrum wishing to learn as much as possible about the diagnosis, and at the other end of the spectrum denial or avoidance of what they have been told (Price et al, 2006, Phipps et al, 2002). People who use avoidance strategies may cope less well if these strategies are taken away (Girgis & Sanson-Fisher, 1998). Therefore positive communication with families must involve an individualised approach, which takes account of the particular needs of each family and the responses and coping mechanisms which need to be supported for those individuals (Ormond et al, 2003, Gatford, 2001). Effective communication also takes account of the meaning which the receiver places on the information provided, since the news communicated can mean different things to different people (Buckman, 1984). For instance in relation to the provision of an evolving diagnosis, the term ‘developmental delay’ may be used. While this is a term that may be familiar and well understood by professionals, it has been noted that the term may give parents an unrealistic expectation that the condition is a set-back, a delay implying perhaps indicating ultimate arrival at a specified goal and that the child will catch up with peers. It is proposed instead that at an early stage the terms ‘developmental disorders’, ‘difficulties’, ‘problems’, but not ‘delay’ should be used. (Williams & Essex, 2004). Of course, the goal of early intervention is to ‘prevent or minimise developmental problems’ for children and therefore effective early intervention will mean that some children do not need ongoing intervention in later years (Guralnick, 1997). However the importance of this example is to illustrate the need for professionals to ensure that the messages communicated have been understood, and the requirement for simple, clear language that avoids medical or technical jargon (Phipps et al, 2002; Price et al, 2006). A hugely important aspect of positive disclosure practice identified throughout the literature is the communication of hope when giving the diagnosis. Parents who received counselling following the diagnosis of cystic fibrosis in their infant expressed the wish for positive messages that contained optimism about the future (Ormond et al, 2003). As discussed earlier, parents have indicated that positive messages should be communicated, rather than a catalogue of all potential negative outcomes (Leonard, 1999), and that empathy and sensitivity is hugely important (Mulrooney and Harrold, 2004). Recommendations from the Literature ● The news should be given as soon as possible and care should be taken to avoid giving negative non-verbal signals before concerns have been shared with parents. ● Language used should be plain, understandable and avoid the use of medical jargon or terminology. Explanations should be given at a level that parents can understand, to build their confidence, taking into account socio-economic, linguistic and cultural factors. ● The manner of the professionals providing the news should be empathetic, sensitive and honest. ● Discussions about the child should be kept positive and predictions should be avoided. ● Parent’s reactions vary widely and cannot be predicted. Parents should be listened to, supported and empowered, and their concerns treated seriously. ● During the disclosure process the parent should be given opportunities to ask questions, and professionals should ask parents to explain what they have heard in their own words to ensure that understanding is as intended. ● A follow up session should be arranged as soon as possible. Contact details should be provided at the first meeting and parents encouraged to make contact to ask further questions if they arise. ● Adequate time should be set aside, including time for the parents to ask questions and vent emotions, with no interruptions – pagers should be switched off. 30

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