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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 Marvin & Pianta (1996) also found that many parents feel intense distress in first learning that their child has a disability. Parents may need help in resolving and integrating the conflicting representational models they might have of the healthy child they were hoping for and the child with disability they actually have (Pianta et al, 1996). Failure to resolve the conflict between the expectation and the reality increases the chances of children feeling insecure. Parents value clear easily understood and sympathetically delivered information about their child’s condition (Sloper & Turner, 1993) and this will be discussed in greater detail later in the chapter. The key to a successful outcome is the ability of the parent and child to communicate effectively and reciprocally and this will require expert advice and training. If parents feel unable to understand the child and his or her needs they become less psychologically available. Parents of children with a specific type of disability benefit from advice guidance and support about the developmental interactional and communicational aspects of their child’s condition. Therefore children with different disabilities will pose different parent-infant relationship challenges (e.g., Lewis, 2003). The psychosocial support that the family receives at the time of disclosure can affect access to support and intervention for the child. Parental acceptance of the diagnosis is strongly linked to their understanding of what they have been told. If appropriate and accurate information and support leading to understanding the nature and extent of the disability are not provided during the disclosure process, the family may not accept the diagnosis, and subsequently may not become aware of benefits and formal support services that their child or family may require, or may not believe that interventions are necessary or appropriate for their child (Hatton et al, 2003). Increased levels of dissatisfaction with disclosure have also been related to increased levels of litigation. Families who were dissatisfied with the disclosure of their child’s disability were significantly more likely to sue than those who were satisfied (Baird et al 2000; Fallowfield & Jenkins, 2004). Attachment, disability, parental stress and caregiver sensitivity remains an under researched field. Children’s development and security benefit when parents feel supported and they are helped to understand their child’s condition. In addition to its role in facilitating the attachment process, this report examines other important areas of the disclosure process, including the development of positive parent-professional relationships, and providing the basis for outcomes leading to increased parental satisfaction. 2.2 Parents’ Experiences For the reasons outlined above it is clear that the disclosure process is a very important step in the family’s adjustment to their child’s disability. The literature shows that while many parents hear the news in a positive and supportive manner, there are also many cases where the news is disclosed in less than ideal ways. Those imparting the news may have views of disability that are negative or ill-informed: [The doctor]… said that he was handicapped. When I asked what type, his answer was that he is mongol and they are all the same. I dreaded going to see him. I thought I might see a monster. But he was lovely; he fed well and was very good. (Parents Future Planning Group, 2000. p8) The feeling that medical professionals see disability in a very pessimistic light is a common thread running through many of the stories told by parents. Throughout the literature, however, parents frequently call for a diagnosis that is truthful and positive (e.g. Leonard, 1999; Sharp, Strauss & Lorch, 1992). Parents can often feel, particularly in the case of an evolving diagnosis, that their concerns are not being taken seriously, or that they are not given full information, and that they are therefore ‘left in the dark’, which is distressing and isolating. (Baird et al, 2000) Parents spoke of the depression that came with the sense of helplessness when they were not listened to. Feelings of isolation were accompanied by (often disproportionate) fears when their suspicions that something was wrong with their baby were not recognised and responded to. (Leonard, 1999. p12) In the initial period after disclosure and particularly following discharge from hospital, there can be a lack of co-ordination between hospital or community services (Redmond, 2000) which can leave parents feeling very alone. …we expected someone to be in contact with us but no-one did (…) we walked out of the hospital when our baby was diagnosed and nobody told us what to do or where to go next. (Western Health Board & Brothers of Charity Galway, 2003 p.15) This report; Review of Early Childhood Services, Brothers of Charity Galway Services, recommends that there be a single liaison person that families deal with in accessing information on diagnosis and services. This person should also assist the family in the transition period after discharge from hospital. 25 2. LITERATURE REVIEW

Informing Families Consultation and Research Report In discussing ways of telling the news that have been positive, some parents mention honesty, directness, and an empathetic manner as important factors. He told us, gently and sensitively – that tests had shown that our child had brain damage, caused probably by a tiny brain haemorrhage, and that an operation was not recommended…. He told us to rear her as normal as possible and only in time would we know the extent of her handicap.We never had any problem with the forthright manner in which we were told. We still believe this was best. (Mulrooney and Harrold, 2004, p.47) 2.3 Professionals’ Experiences Various studies have indicated that the news of a child’s disability is most commonly provided by Paediatricians or other consultant doctors. Cunningham, Morgan & McGuckan (1984) found that 88% of parents were told by a Paediatrician, in Pearson et al (1999) the percentage was 87%. Both of these studies were carried out in the UK. In a Swedish study by carried out by Hedov (2002) 85% of families were told by a Paediatrician. The most recent available study also comes from the UK, and deals with the disclosure of Down Syndrome only (Downs Syndrome Association, 2006). This report found that when the diagnosis was given during pregnancy 41% of parents were told by Midwives and 40% by Obstetricians. When the diagnosis was given after birth 71% were told by Paediatricians, 11% by Midwives, and the remainder were told by various other disciplines or had guessed themselves (Downs Syndrome Association, 2006). There is a large body of literature describing the role played by nurses in reinforcing and clarifying the information that parents receive, encouraging appropriate settings and fostering sensitive, effective communication (Ahmann, 1998; Narasanayamy, 2003; Price et al, 2006). One major limitation of the literature is that it concentrates largely on the experiences of professionals from medical and nursing backgrounds, and does not widely report the perspectives of other members of the multidisciplinary team who also play a key role, such as those identified by Doyle (2004), e.g. Social Workers, Physiotherapists, Occupational Therapists, Speech and Language Therapists, Psychologists, etc. The international research indicates that the process of communicating the diagnosis of a disability to a child’s parents is difficult for the professionals involved, and one that can bring the professional’s own emotions to the fore. Consequently those providing the diagnosis may find themselves feeling sad and upset, and perhaps thinking of their own children (Hasnat & Graves, 1999). Clinicians have expressed the view that the process of disclosing difficult news is of significant importance, but many feel inadequately trained to do it (Phipps & Cuthill, 2002). Having the communication skills required to break news is one of the key aspects of disclosure that can leave professionals feeling a lack of confidence (Abel et al, 2001). An Australian study found that while 64% of interns felt competent with their technical skills, only 35% of the same group felt competent about their interactional skills, including breaking ‘bad news’ (Campbell & Sanson-Fisher, 1998). Hasnat and Graves (1999) found that of a group of 26 paediatricians studied, 50% noted that providing the diagnosis of the child’s disability had left them sad or upset, 23% reported feelings of detachment, 12% felt fearful and experienced anxiety and uncertainty, and 8% indicated that they felt drained. It is not surprising therefore, given these feelings, that some professionals may use distancing tactics when discussing emotionally charged topics (Phipps & Cuthill, 2002). 2.4 Dissatisfaction with Disclosure is not inevitable The theme of whether dissatisfaction with disclosure is inevitable receives much attention in the literature (Cunningham et al, 1984, Cunningham, 1994; Doyle, 2004; Pearson et al, 1999; Sloper and Turner, 1993). There is a need to dispel the view that dissatisfaction with disclosure is attributable to parental dissatisfaction with the diagnosis itself (and therefore that ‘there is no good way to give bad news’), in order to move forward with implementing practice which aims to improve parents’ satisfaction with the way in which the news is communicated. Through a study of the then existing literature, from the 1960’s to the 1990’s, Cliff Cunningham (Cunningham 1994) found that between 40% and 80% of parents expressed dissatisfaction with the way in which they were told of their child’s disability. He found that the reasons for dissatisfaction came from a number of key areas; firstly the manner of the person giving the diagnosis (e.g. insensitive, or using language that was difficult for parents to understand). Secondly, a lack of, or problematic information, including contradictory or inaccurate information, and finally organisational aspects, such as delay in giving the news, lack of privacy, co-ordination, etc. However, through his own work with families, Cunningham found that parents who had been given the news in a positive way felt no need to recount the event of disclosure for cathartic reasons, and that they maintained positive relationships with the professionals who disclosed the news. He also found that when kept fully informed of reasons for delay, or 26

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