国产探花

Being Informed on Informed Choices

Gwen Carr and Ian Noon

The principle of 鈥業nformed Choice鈥� has long been a focus in relation to provision for deaf children and families.聽 Research carried out by the University of Manchester in partnership with the National Deaf Children鈥檚 Society in 2005, as part of the then UK government鈥檚 Early Support Initiative, gave rise to the following definition:

鈥淚nformed Choice means that families can make knowledgeable decisions which reflect their own culture, values and views. It is based on access to comprehensive, unbiased and evidence-based information, about the full range of options鈥�.

The focus on Informed Choice really arose out of three related factors: the reported experience of families of deaf children who were not always informed of all potential options (and particularly not informed about options not readily available in their own areas); growing understanding of and evidence for the impact of family empowerment and family centred service delivery; and the wider political and policy climate that recognised the importance of Informed Choice in many aspects of healthcare and education.聽 Added to these was the then relatively new but now routine context of newborn hearing screening, leading to the early identification of deaf children and bringing with it a seemingly compressed time frame in which parents were faced with decisions which they had not anticipated, notably about language and communication.

Janet DesGeorges, The Director of the US parent-peer organisation 鈥楬ands and Voices鈥�, has described choice and decision making as 鈥渁n enduring experience of parenting a deaf child鈥�. The experience applies to a wide range of issues 鈥� amplification, cochlear implantation, education placement, social activities and in many other aspects throughout a child and young person鈥檚 life, but it is perhaps in the area of language and communication, especially following early identification, that it has received most focus. The term is probably better phrased as 鈥業nformed Choices鈥� in the plural, to avoid subconsciously implying options as binary, an 鈥榚ither-or鈥� in relation to spoken or visual language options, or inferring that only one choice can be made, or is a 鈥榝orever鈥� choice.

Notwithstanding the position of some in holding to a particular belief or philosophy about what is right for all deaf children, the principle of Informed Choices is generally widely supported amongst professionals. But it can be very challenging to enact and to make a reality for families, even when commitment to do so is strong. From research in both the UK and in international contexts, as well as the continued reported experiences of families, it is clear that barriers to enabling informed choices exist not only in systems in terms of resourcing, practicalities of organisation and geographical constraints,聽 but also in how professionals, especially at the time of diagnosis and the time following, support families to explore and make choices for their child and family. This involves not only sharing information which is comprehensive, accurate and impartial, and providing experiences that deepen families鈥� understanding of potential choices聽 (such as routinely meeting other families and deaf people who have made a range of communication choices themselves) but also supporting families to make decisions in ways that are sensitive to their individual strengths, resources, needs and experience and respecting families鈥� cultures, values and views. To make properly informed choices, parents need to understand the implications of their choices and what they may mean for their child and family both in the short and longer term, whilst appreciating that no choice is 鈥榝or life鈥� or cannot be modified as they learn more about and are led by their child鈥檚 needs and strengths, and move increasingly towards the time when their children grow and develop to become informed choice and decision makers for themselves.

So what do services who promote and enable Informed Choices ideally look like? From a systems level and from a practitioner level?

At a systems level, for Informed Choices to become a reality for families:

• All language and communication options should be valued as equal and respected as positive choices for families to adopt, whether those choices are for a sign or spoken language only approach, a combination of approaches, or a bilingual approach. They should be available and accessible to all families via publicly funded services from the start.
• Services should make no value judgements about language and communication choices nor infer that there are 鈥榬ight or wrong鈥� choices. This should be reflected in their strategic decision making and resourcing.
• Information shared about language and communication options should be full, unbiased and evidence-informed.
• Whether in the health, education, or social care sectors, services should have in the professional team, both members who have experience as parents of a deaf child, and those who have lived experience of deafness. Families should also be supported to explore wider experiences with other families with deaf children and with deaf adults 鈥� both to gain an understanding of deaf culture and to appreciate the many identities and choices deaf people choose to embrace.
• Whatever approach or approaches to developing language and communication are chosen by families, the professionals who support them should be knowledgeable and skilled in supporting parents in those choices. Where sign language is a choice, appropriate and accessible means of helping families learn to sign should be available.
• Language and communication choices should not be equated with a child鈥檚 level of deafness. All choices should be enabled for all families based on individual deaf children鈥檚 strengths and needs (and later, preferences), and those of the family.
• Families should be respected as equal partners, and shared decision making between families and professionals can support families in making initial informed choices for their child, especially in the early weeks and months when parents do not yet have the knowledge and experience they will later acquire to support their confidence in decision making.

From an individual practitioner or specialist team perspective, the characteristics, skills and attitudes of Teachers of the Deaf, as key supporters of families following identification of a child鈥檚 deafness, together with those of their colleagues in audiology and other allied services in the care pathway, can have a huge influence on parents鈥� opportunities and abilities to make informed choices. Professionals supporting families can promote and facilitate informed choice making by:

• Recognising and reflecting on their own potential bias 鈥� either declared or unconscious 鈥� towards different communication choices and being careful that any bias does not affect the way they frame options, or serve to persuade or dissuade families in relation to their choices
• Being careful not to make assumptions about child and family needs and preferences. For example, assuming that hearing families will naturally 鈥榩refer鈥� a spoken language approach or that children with mild or unilateral hearing losses will not be interested in exploring sign language, or that Deaf families whose home language is BSL would not wish to explore amplification or spoken language options.
• Being knowledgeable about different language and communication choices and being able to explain these to families in a meaningful way, recognising the unique strengths and needs of each family
• Ensuring that they have the skills and expertise to engage in shared decision making with families, to support families to become confident decision makers on behalf of their own child and family, and in working in a multi-disciplinary way and in partnership with families to do so.
• Ensuring that they fully inform families about all options, being honest about what is and isn鈥檛 available locally, and informing families about where they can find more information and actively explore a wide range of options.
• Helping families to connect with other families and with those with lived experience of deafness, to help deepen their understanding of language and communication options.
• Being proactive about widening opportunities for families to make informed choices and to enact their choices, in partnership with all those in the family鈥檚 support network from other sectors.

The challenges to translating a belief in and commitment to Informed Choices can be significant at both systems and practitioner levels, and the barriers inhibiting availability and accessibility at the strategic level cannot be underestimated. These barriers require continued dedicated and sustained efforts to address and minimise, to persuade strategic decision makers of the importance of properly enabling and resourcing options to enable true informed choice making for families. At the same time however, it is important to recognise that individual practitioners, and notably Teachers of the Deaf who share close relationships with families in the early years in particular, can have huge positive impact in empowering and enabling families to pursue their choices from an informed and confident position, and in influencing others in the support network whose communication and actions also affect families鈥� opportunities. The positive impact of skilled and knowledgeable professionals who communicate fully, effectively and without bias in respect of empowering families to make informed choices is significant, even in the face of systemic barriers.

References / Further reading

Young A, Carr G, Hunt R, Skipp A, Tattersall H, McCracken W: Informed Choice, Families and Deaf Children: Professional Handbook; UK Govt. Department for Education and Skills / Early Support Programme (2006)

Des Georges J: Family perceptions of early hearing detection and intervention systems 鈥� listening and learning from families: Developmental Disabilities Research Review 9(2) (2003)

Harris C, Hermer SR, Chur-Hansen A: Informed Choice and unbiased support: Parents鈥� experiences of decision-making in paediatric deafness; SSM- Qualitative Research in Health (2021)

National Deaf Children鈥檚 Society: Investigating how families experience informed choice and perceive the impact of information they receive on their decision making about language and communication for their child in Scotland (NDCS website, 2024)

Porter, A, Creed P, Hood M and Ching YC: 聽Parental Decision-Making and Deaf Children: A Systematic Literature Review; Journal of Deaf Studies and deaf education (2018)