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chapter 2 - National Federation of Voluntary Bodies

chapter 2 - National Federation of Voluntary Bodies

2.5.3. Provision

2.5.3. Provision of Information and support Informing Families Consultation and Research Report Themes Michael Guralnick (1997), in his evaluation of the effectiveness of early intervention, described a ‘crisis of information’ which many families experience when faced with the news of their child’s disability. This crisis of information, according to Guralnick, includes questions about the child’s behaviour, ways that the parent’s own care-giving activities may need to be altered, the meaning of a particular diagnosis in terms of developmental expectations for their child, and the nature and effectiveness of therapeutic services provided by professionals. Guralnick describes this information crisis as one of four major risks to the family system in the context of a child’s disability; and consequently to the development of the child. One of the key aspects of good disclosure, and a counteraction to the information crisis described above, is the provision of information on services, entitlements and sources of support for parents (Doyle, 2004; Right From The Start, 2003). Having a child with a disability may be a significant source of stress for families and can place immense pressure on the dynamics and relationships within a family (Speedwell, 2003; Pelchat, 2004; Phua et al, 2005). This is a time that the family need to have maximum support and minimum extra stresses (Redmond, 2000). A lack of information can increase pressure on the family as time and energy are invested in seeking details about services and entitlements. The evidence suggests that in Ireland this information is often provided in a haphazard fashion, leading parents to search for information from a disparate range of sources, at a time that is already very stressful (Commission on the Status of People with Disabilities, 1996; Redmond, 2000). In its’ study of the first information provided to families of children with disabilities, the former South Western Area Health Board (2003) found that 66% of families received no information pack, 30% said that the information that they had received was not clear, and 36% stated that the information they had received had not come in good time. Clearly then, there is a wide gap between the recommendations for best practice contained in the international literature, and current practice on the ground in Ireland. As detailed above there is a need to respect parents reactions and coping mechanisms, which may include a wish to avoid receiving information at the beginning as part of their coping mechanism, or may lead to parents wanting to have as much information as possible. Miller & Mangan (1983) characterise those who seek information as ‘monitors’ and those who wish to avoid information as ‘blunters’ and indicate that the amount of information provided should seek to identify parental characteristics and preferences at the outset. Since parents may not be aware of the range of information that can be provided, one device that may assist appropriate pacing of information is to outline the areas that can be covered, thus allowing for individual family choice (Girgis & Sanson-Fisher, 1998). Family choice is also indicated in the types of support that are offered following disclosure. One study (Sawyer & Glazner, 2004) found that while two-thirds of families would strongly welcome being put in touch with other parents, one third would ‘definitely not’ wish to do so. An area of particular importance for the provision of quality information is for those parents whose child receives a diagnosis that evolves over a period of time. For these parents there is often a long period of anxiety and uncertainty before a firm diagnosis is made (Quine and Rutter, 1994). The information received by many in this group has been reported by many parents to be inadequate and confusing (Quine and Rutter, 1994; Redmond, 2000). An increasing number of parents now turn to the Internet as a source of information following the disclosure of a diagnosis, and many sources on the Internet have a poor level of accuracy when benchmarked against best practice (Speedwell, 2003).The ERHA report on Integrated Patient Care (Doyle, 2004) supports the theory that many families are using the Internet as a source of information immediately following disclosure. The report identifies that this can prove problematic if families access information that is not reliable, accurate or perhaps not fully applicable to their child’s diagnosis. There is a therefore a need for professionals to direct parents to sites providing balanced, relevant and comprehensive information (Downs Syndrome Association, 2006). Recommendations from the Literature ● Information provision should be staged and the diagnosis or concern should be shared honestly and sensitively, taking into account any other treatment the child is having. ● Information should be reinforced at appropriate times to enhance parental understanding. ● Next steps should be outlined - such as what tests will be carried out, help that is available etc. ● Parents should be offered factual written information on their child’s condition. This may include leaflets, magazine articles and books. ● Parents should be provided with information on peer groups, advocacy groups and self help agencies ● After diagnosis the parent needs to be made aware of the services available to the child and family. ● The family should be provided with guidance on appropriate Internet sites which contain relevant and accurate information for their child’s particular disability.* 31 2. LITERATURE REVIEW

Informing Families Consultation and Research Report 2.5.4. Culture and language Themes As Ireland becomes more culturally diverse the increased need for culturally competent care and support is self-evident. The cultural needs of individuals accessing health care services have been identified as ...the need for equal access to treatment and care; the respect for cultural beliefs and practices, including religious, dietary, personal care needs, daily routines, communication needs, and cultural safety needs. (Narayanasamy, 2003, p.185) Different cultures may have different understandings in relation to cultural health beliefs, and this can include various interpretations of disability (Gatford 2001; Hatton et al, 2003). For example, a recent Zambian report describing myths and misinformation about disability indicates that some communities in that country look upon a disabled child as ‘a curse or a punishment from God’ (Zambian State, 2007). In other cultures some disabilities can be viewed in an extremely positive light. Levinsone & Gaccione (1997) list several cultures where people with certain types of physical impairment are highly valued and believed to have special powers or abilities. Reynolds-Whyte & Ingstad (1995) also note how, in many cultures, blind people are more likely to become learned religious men, storytellers or singers, such as Surdasi, the blind singers of India. The consequences of such views, particularly those that see disability in a negative light can be very serious for family members. Gatford (2001) found that the mothers of children with disabilities from various ethnic communities were particularly isolated for a number of reasons; some had been left by their partners who blamed them for the birth of a child with a disability; whilst others were isolated through their difficulty in explaining the child’s condition to family members and kept ‘themselves to themselves’ for fear of rejection from friends. Hatton et al (2003) found that satisfaction levels with disclosure amongst South Asian families in his study were as low as 14.7%. He suggests that it is helpful if parents are given a broad understanding of the disability and how it occurs so that they can counter unhelpful myths amongst their family and friends. This study also found that poor parental understanding the diagnosis led to delays in accessing benefits and formal supports. Parents made links between the way the disclosure process was handled and their understanding and acceptance of their child. (Hatton et al, 2003, p.183) The most obvious limitation to understanding (and therefore acceptance) is language. The literature strongly advises against the use of family members or friends as interpreters, indicating that family members or friends may provide inaccurate information due to embarrassment, may interpret rather than translate, and that the professional may be unaware of whose views are being expressed (RFTS, 2003; Narayanasamy, 2003). Further complications may be experienced if both parents are not told together, as one parent is left trying to interpret for their partner information which they themselves find difficult to understand (Hatton et al, 2003). Staff members may need to develop both cultural-specific and generic cultural competence in order to fully support families from a diversity of backgrounds (Narayanasamy, 2003). It should also be born in mind that not all members of any given group will possess the same cultural attributes and ideas, and the principle of individualised care must therefore be maintained. (Phipps & Cuthill, 2002). Without understanding the cultural meanings that different groups assign to disability, there is a danger that the support provided at disclosure will not be specific enough to cater for the family’s needs, and will not be adequately individualised (Gatford, 2001). Culturally competent care requires professionals to be aware of their communication in areas such as body language, eye-contact and proximity as well as ensuring assistance for non-English speakers. (Narayanasamy, 2003) Recommendations from the Literature ● Cultural difference should be acknowledged and respected. ● Use of an interpreter should be offered for family members with limited English proficiency, and the role of the interpreter explained. Under no circumstances should a family member or friend be expected to take on this role. ● Written information should be provided to non-native speakers in their own language. ● When families from diverse cultural backgrounds are being given a diagnosis of a disability particular attention should be paid to gaining an insight into the meanings that each family assign to disability. Accurate information should be provided to explain the diagnosis and dispel myths or unhelpful understandings of the disability.* 32

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