University of Edinburgh
 

Early Diagnosis: Supporting Parents to Support their Child

Presented on Thursday 9 November 2006

Why Family Friendly Services

Brian Shannan

There is evidence to suggest that the early identification and management of children with a permanent congenital hearing impairment prior to six months of age can benefit the linguistic development of the child (Yoshinaga-Itano, 1998)

With NHSP the age of identification will be earlier than before when the typical age for identification was 12 months (Davis et al, 1997)

There is anecdotal evidence that early diagnosis may cause anxiety and stress to the family

Therefore, there is the potential at worst that the emotional, psychological and social consequences of early diagnosis may undermine the purpose of the screen. Even at best the process of early diagnosis may be painful and difficult. (Baguley et al 2000)

There is a need for services to be ‘family friendly’ – that is to focus on the support and care that each individual family need

Two main components – within the hospital setting and follow up support

Underlying Principles of a Family Friendly Service (All)

  • Families are different
  • Families and professionals should work in partnership
  • There should be partnership between agencies
  • Families have a right to comprehensive, unbiased evidence-based information
  • Services and professionals should be disinterested – making no value judgements on the decisions taken

Principles of a Family Friendly Service (Audiology)

  • Dialogue should be undertaken in appropriate language
  • Continuity of care
  • The physical environment should be family friendly
  • Meeting the needs of the family is more important than adhering to standards

Principles of a Family Friendly Service (Follow Up Support)

  • Intervention can be counter-productive – DO NO HARM
  • The child may be deaf but the family make decisions about the services provided
  • Legitimacy & trust are essential
  • Relationship building
  • Enable parents to identify, clarify and manage problems

Family Friendly Services

  • Professionals should not bring their own prejudices with them
  • Professionals should take care not to reinforce the medical model in the follow up support
  • Perceptions of deafness as a tragedy/deficit can impact on attachment & interaction
  • Self-awareness
  • Need to tune into the family and how it works

The Family

  • The nuclear family has become outmoded with the emergence of ever more complex family patterns
  • Marriage no longer a definitive factor
  • Couples living together
  • Single parent families
  • Step families
  • Gay couples
  • Extended family no longer grandparents, uncles etc
  • Blood ties may take second place in the concept of ‘significant other’ in relation to a family network
  • These could include friends, neighbours etc
  • These ‘significant others’ can be instrumental in shaping and influencing the values and beliefs of the family unit
  • Families have their own culture and values

The Impact of a Deaf Baby on the Family

  • The birth of any child brings disruption to the family
  • Along with joy there can also be fear/anxiety
  • There is a process of adjustment and realignment
  • A woman becomes a mum, a mum becomes a grandma etc
  • During this process of adjustment there becomes assigned expectations either from your own experiences or the media
  • Diagnosis of deafness can add further stress
  • Depending on family experience their knowledge and expectations on the subject of ‘deafness’ can also be limited

Methods of Working with Parents – The Expert Model

  • The professionals are the experts with knowledge of the subject –deafness
  • They are in control – decides and elicits information thought to be appropriate
  • Derives solution to any difficulties from his/her perspective
  • May decide on goals without making them explicit
  • The parents is assumed to need and accept the intervention
  • The parents are compliant

Methods of Working with Parents – The Expert Model

Advantages

  • May give relief that another person takes responsibility
  • Straightforward for the support worker

Disadvantages

  • Denies expertise to the parents
  • May reinforce a feeling of inadequacy at a time when the parents feel vulnerable
  • May create dependency rather than independence

Methods of Working with Parents – The Partnership Model

  • Joint working
  • Respect
  • Open interaction
  • Flexible
  • Empowering – increase experience and understanding
  • Supporting the family not only the child
  • Evidence based
  • Disinterested when providing information

Methods of Working with Parents – The Partnership Model

Advantages

  • Parents more likely to engage
  • Empowering of parents does not mean giving the family power as it is theirs by right (Baguley et al 2000)
  • Allows parents to express their views
  • Acknowledges parents vital role

Disadvantages

  • A relationship takes time to establish –
  • More emotionally demanding – difficult to switch off
  • High degree of sensitivity, skilled listening, understanding and communication
  • Training issues
  • Time consuming

Essential Qualities/Skills

  • Respect
  • Genuineness
  • Empathy
  • Humility
  • Personal integrity
  • Organised
  • Listening
  • Problem solving
  • Skilled communication
  • Able to work in partnership with others