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National Carers’ Strategy Survey

February 1st, 2021

Care Alliance Ireland would like to invite you to participate in a short survey on the National Carers’ Strategy.

The National Carers’ Strategy was published in 2012. It describes government policy for those who care (in an unpaid capacity) for older people, children and adults with an illness or a disability. The National Carers’ Strategy contains 42 actions and this survey is being conducted to assess whether or not these actions continue to be relevant in 2021 from the perspective of key stakeholders including family carers, policymakers, relevant service providers, and researchers.

The Programme for Government 2020 includes a commitment to review and update the National Carers’ Strategy. It is hoped that the findings from this survey will help inform the development of the next National Carers’ Strategy, that is being led by the Department of Health, in consultation with the wider family carer sector.

The survey is being undertaken as part of CARERENGAGE, a joint project between Care Alliance Ireland and Institute of Social Science in the 21st Century (ISS21), University College Cork, and funded by the Irish Research Council (New Foundations). You can read more about the CARERENGAGE project here if you wish.

To conduct the survey, Care Alliance Ireland have partnered with Dr Maria Pierce, an independent researcher. Your participation in this survey is voluntary and ‘your responses will remain anonymous and strictly confidential. The survey will take approximately 10 minutes to complete. Please read the participant information sheet before deciding if you would like to take part. The participant information sheet can be found here and also when you click on the link below to access the survey.

If you would like to be entered in the draw for the €50 participant voucher and/or would like to participate in future consultations in relation to the next National Carers’ Strategy, you will be invited to do so at the end of the survey.

If you have any questions about the survey, please contact Dr. Pierce at piercemaria@hotmail.com.

To participate in the survey, please click here

 

 

This survey will close at 5.00pm on Wednesday 3 February 2021.
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Categories: Studies

1. Muscular Dystrophies

  • Becker muscular dystrophy
  • Duchenne muscular dystrophy
  • Manifesting carrier of Duchenne
  • Congenital muscular dystrophy - General
  • • MDC1A (merosin-deficient congenital muscular dystrophy)
  • • Rigid spine syndrome (RSS)
  • • Ullrich congenital muscular dystrophies
  • • Bethlem myopathy
  • Emery-Dreifuss muscular dystrophy

2. Myotonic Disorders

  • Congenital Myotonic Dystrophy
  • Myotonia
  • Myotonic Dystrophy

3. Congenital Myopathies

  • Central Core Myopathy
  • Minicore (Multicore) myopathy
  • Myotubular or Centronuclear myopathy
  • Nemaline myopathy

4. Mitochondrial Myopathies

  • Mitochondrial Myopathies

5. Metabolic Disorders

  • Metabolic disorders (general)
  • McArdle’s Disease
  • Pompe’s Disease

6. Periodic Paralyses

  • Periodic Paralyses

7. Autoimmune Myositides

  • Polymyositis, Dermatomyositis and Sarcoid myopathy
  • Juvenile dermatomyositis
  • Inclusion body myositis

8. Spinal Muscular Atrophies

  • Severe (Type I)
  • Intermediate (Type II)
  • Mild (Type III)
  • Adult spinal muscular atrophy

9. Hereditary Motor and Sensory Neuropathies

  • (Also known as Charcot-Marie-Tooth or Peroneal muscular atrophy)

10. Disorders of the Neuromuscular Junction

  • Congenital myasthenic syndromes
  • Myasthenia Gravis

11. Friedreich’s Ataxia

  • Facioscapulohumeral muscular dystrophy
  • Limb-girdle types of muscular dystrophy (LGMD) - General
  • • LGMD 1B (also known as Laminopathy)
  • • LGMD 1C (also known as Caveolinopathy)
  • • LGMD 2A (also known as Calpainopathy)
  • • LGMD 2B (also known as Dysferlinopathy)
  • • LGMD 2I
  • Ocular myopathies including ocularopharangeal muscular dystrophy

12. Other (Please Specify)

13. Unspecified