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Family life and relationships

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Forgotten families – The impact of isolation on families with disabled children across the UK, 2011 [PDF]

In our survey of over 1,100 families with disabled children, we found out about the levels of isolation families with disabled children experience and how this impacts on their family life.

Key findings:

  • 72 per cent of parent carers experience mental ill health such as anxiety, depression or breakdown due to isolation.
  • 1 in 5 (21 per cent) say that isolation has led to the break up of their family life.
  • Over half (56 per cent) felt the cause of their isolation is a lack of support from services such as social care and education.

Related:

What makes my family stronger: a report into what makes families with disabled children stronger – socially, emotionally and practically, 2009 [PDF]

Contact a Family surveyed 615 families with disabled children about their experiences of living in the UK, asking what makes them stronger socially, emotionally and practically.

Key findings:

  • Almost 70 per cent said that understanding and acceptance of disability from their community is poor.
  • Over 60 per cent of families said they don’t feel listened to by professionals.
  • Over 70 per cent said their child’s access to play and leisure specifically for disabled children is poor.

Patient safety in the NHS, 2007 [PDF]

This consultation was undertaken on behalf of the National Patient Safety Agency. It aimed to record the experiences and views of parents with disabled children and young people receiving NHS care in England and Wales.

  • Parents of disabled children have an expertise in the health needs of their child and they must be listened to.
  • Almost all parents talked about the need for a greater level of disability awareness amongst professionals.
  • Small changes and increased flexibility can make the difference between a useful or a wasted and risky hospital appointment.

No time for us, 2003 [PDF]

This survey of 2,000 parents looked at the impact having a disabled child has on the relationship of the parents. The report includes policy implications and recommendations.

Key findings:

  • Almost a quarter of respondents said having a disabled child has brought them closer together.
  • However, almost a quarter again felt having a disabled child caused major problems in their relationship.
  • Over one in six of the respondents are bringing up their disabled child alone.

“I want to be treated the same as my brothers.” Quality of life of disabled children and young people survey report, 2009-2012 (Scotland) [PDF]

A joint report commissioned by the fSDC coalition (of which Contact a Family is a founding member) and Long Term Conditions Alliance Scotland (LTCAS),this study looked at young people’s experiences, for example about schools, health and wellbeing.

Key findings:

  • Many disabled children enjoy close relationships with their parents, place high value on friendships and enjoy their time at school.
  • There is a need for services that would enable children and young people to develop friendships, for example befriending and buddy scemes.
  • Professionals working with disabled children and young people would benefit from disability equality training.

For Scotland’s Disabled Children (fSDC) Diary Project final report, 2009-2012 [PDF]

The Diary Project, run in partnership with Perth YMCA, enabled parents and family members to share their experiencesa of being part of a disabled family. A few of the participants contributed to a complenting DVD highlighting the merits of blogging.

Key findings:

  • The blogs and diaries provided valuable information to inform developments or changes in different policy areas.
  • Social media offered accessible avenues for people whose voices have previously been overlook to share their experiences.
  • Decision makers were given a route to hearing the voices of disabled childrem and their families.