Read SEND/medical research

patientINFORM patient informThis is the page where you will find all the articles that have been opened up to us from our collaboration with patientINFORM. A small number are awaiting being opened up - check back soon if you find this is the case with an article you want to read.

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pi: autistic spectrum disorders

Cognitive Behavioural Therapy for anxiety in youth with an autism spectrum disorder

patient inform logoAutism Journal

This report attempts to gather an evidence profile for the advantages of behavioural therapies on autistic spectrum young people suffering with anxiety symptoms. It argues that whilst the links between mitigating anxiety and such therapies might appear self-evident and logical, it proceeds from the standpoint of wanting the value of such therapies, which is achieved by assessing the progression of 32 cases of young people suffering with autism-derived anxiety.

It finds greater-than-expected change in cases of anxiety, and the article subsequently argues that cognitive-behavioural therapy is a treatment that should be allowed to gain momentum. Whilst this is a review of the value of this approach, the article is throughout aware of the fact that in many cases alternative methods are not available, and that it is a method that can seldom do harm.

Authors: Robert R Selles, Elysse B Arnold, Vicky Phares, Adam B Lewin, Tanya K Murphy and Eric A Storch, Article first published online: 12 JUN 2014.

Publisher: Sage Journals. Opened up at request from SNJ via patientINFORM partnership
Volume 19, Issue 5, pages 613–621, July 2015.

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Experiences of diagnosing autism: A survey of professionals in the UK

Experiences of diagnosing autism spectrum disorder: A survey of professionals in the United Kingdom

Introduction

The aim of this research was to obtain professional opinions of the autism spectrum disorder (ASD) diagnosis process in the UK.  116 professionals involved in the diagnosis of ASD in the UK were asked their views of accessibility, the diagnostic process and post-diagnostic support.

The overall findings were that the most professionals were satisfied with accessibility yet around 40% of services were failing to provide timely assessments.  The majority of professionals also reported the standard tests to be useful but there was concern about how useful they were in detecting atypical ASD (e.g. in females). Less than half of the professionals surveyed reported being able to offer post-diagnostic follow-up support sessions (as recommended by NICE).  There was also dissatisfaction with post diagnostic provision and a feeling that service improvements were needed for most age groups.

Claire L Rogers, Lorna Goddard, Elisabeth L Hill, Lucy A Henry and Laura Crane.   Article first published online: 16 December 2015

Publisher: Sage Journals. Article opened up to free access at request from SNJ via patientINFORM

Autism October 2016 vol. 20 no. 7 820-831

http://aut.sagepub.com/content/20/7/820.full.pdf+html (PDF link)

http://aut.sagepub.com/content/20/7/820.abstract (Abstract link)

Immune mediators in the brain and peripheral tissues in autism spectrum disorder

PATIENT RESEARCH

Nature Reviews Neuroscience

This article is a comprehensive, detailed review of current research into the role of the immune system in the development of autistic spectrum disorder (ASD). There are a number of ASD associated genes and many encode components of the immune system. There are also a number of environmental risk factors for ASD many of which are mediated via the immune system. The authors end by raising the possibility of future treatment of some of the symptoms of ASD by targeting immune function.

Pages:
Published by: Springer Nature, opened up to free access at request from SNJ via patientINFORM

Read the whole article here: http://rdcu.be/l7yg

Nature Reviews Neuroscience. Volume: 16, Pages 469–486 Year published: (2015) doi:10.1038/nrn3978 Published online 20 July 2015 Nature Reviews Neuroscience Myka L. Estes, A. Kimberley McAllister

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Onset of psychiatric disorders in mothers after the birth of a child with autism

Onset of maternal psychiatric disorders after the birth of a child with autism spectrum disorder: A retrospective cohort study

This research paper looks at the incidence of mental health problems in mothers with a child with autistic spectrum disorder (ASD) and Learning Disability (LD), with a child with ASD and no LD and to compare this with mental health problems in mothers with a typically developing child.

The team analysed medical data from over 250,000 women in Western Australia and found that of the three groups, overall, mothers with children with ASD and no LD were most likely to suffer with mental health problems.  They suggest that in view of their findings more support and interventions are put in place for mothers with children diagnosed with ASD.

Jenny Fairthorne, Peter Jacoby, Jenny Bourke, Nick de Klerk and Helen Leonard

Article first published online: 4 February 2015

Publisher: Sage Journals.  Article opened up to free access at request from SNJ via patientINFORM

Autism January 2016 vol. 20 no. 1 37-44

http://aut.sagepub.com/content/20/1/37.full.pdf+html (PDF link)

http://aut.sagepub.com/content/20/1/37.abstract (Abstract link)

Plugged in: Electronics use in youth and young adults with autism spectrum disorder

PATIENT RESEARCH

Plugged in: Electronics use in youth and young adults with autism spectrum disorder

The paper aimed to look at both the benefits and problems with electronics use in young people with an autism spectrum disorder and compare this with electronic use in young people without autism.

The data was collected using an online survey of parents in the USA and Canada.  Young people with ASD appeared more likely to use certain electronics and electronics use appeared to be significantly more likely to have a negative impact on young people with ASD than with children without ASD.  In conclusion the authors suggest that more research is needed to support families of young people with ASD to manage electronics usage to avoid problems.

Authors: Jennifer A MacMullin, Yona Lunsky and Jonathan A Weiss

Article first published online: February 18th 2015

Publisher: Sage Journals. Opened up at request from SNJ via patientINFORM partnership

Link to article: http://aut.sagepub.com/content/20/1/45.full.pdf+html

Link to abstract: http://aut.sagepub.com/content/20/1/45.abstract?rss=1

Autism January 2016 vol. 20 no. 1 45-54

Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

psychology logo

Clinical Child Psychology and Psychiatry

Separating ‘emotion’ from ‘the science’: Exploring the perceived value of information for parents and families of children with autistic spectrum disorder

With the diagnosis of autistic spectrum disorders (ASDs) on the increase, it is the position of this report that information, and the management of it, is an essential part of managing an ASD within a family context. This analysis deploys the use of focus groups, with candidates either with a personal and/or professional interest in ASDs, to assess the central issues of information dialogue.

The central themes exhumed were the value of particular information sources (i.e. accessible to the non-professional), the potential vulnerabilities of families and the need for evidence. The report argues therefore that information must be managed carefully and with close reference to perceived familial vulnerabilities. The effect of practicalities, such as fatigue or time constraints are also accentuated.

Authors: Michelle O’Reilly, Khalid Karim and Jessica Nina Lester, Article first published online: 14 APR 2014

Publisher: Sage Journals. Article opened up to free access at request from SNJ via patientINFORM
Volume 20, Issue 3, pages 500-514, July 2015

Read the article abstract here.

Read the article PDF here.

The effect of ‘Autistic Spectrum Disorder’ labels on the responses of college students towards peers

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Autism Journal

Managing social interactions within the college/university environment can prove challenging for those with austistic spectrum disorders, but equally the reactions and responses of other peers can be important in making progress. Mark Brosnan and Elizabeth Mills' report seek to explore the effects of diagnostic labels in situations of social interaction. Do such labels explain the situation to peers or rather act to isolate individuals?

This report analyzes the responses of higher education students after reading fictitous scenarios, some of which include diagnostic labels and some that don't. The report argues that the way in which it fails to find a link between poor prior knowledge of autism and a more negative reaction might suggest that attitudes towards mental health have improved among the general public more broadly.

Authors: Mark Brosnan and Elizabeth Mills, Article first published online: 4 JUN 2015

Publisher: Sage Journals / National Autistic Society

Opened up at request from SNJ via patientINFORM partnership

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PI: Development

Neurobehavioural effects of developmental toxicity

patient inform: lancet

 

The Lancet Neurology, Volume 13, No. 3, p330–338, March 2014

Neurodevelopmental disabilities, including autism, attention-deficit hyperactivity disorder, dyslexia, and other cognitive impairments, affect millions of children worldwide and some diagnoses seem to be increasing in frequency. Industrial chemicals that injure the developing brain are among the known causes for this rise in prevalence.

In 2006, the study authors did a systematic review and identified five industrial chemicals as developmental neurotoxicants: lead, methylmercury, polychlorinated biphenyls, arsenic, and toluene. Since 2006, epidemiological studies have documented six additional developmental neurotoxicants—manganese, fluoride, chlorpyrifos, dichlorodiphenyltrichloroethane, tetrachloroethylene, and the polybrominated diphenyl ethers. We postulate that even more neurotoxicants remain undiscovered.

To control the pandemic of developmental neurotoxicity, we propose a global prevention strategy. Untested chemicals should not be presumed to be safe to brain development, and chemicals in existing use and all new chemicals must therefore be tested for developmental neurotoxicity. To coordinate these efforts and to accelerate translation of science into prevention, we propose the urgent formation of a new international clearinghouse.

  • Dr Philippe Grandjean, MDa, b, , ,
  • Philip J Landrigan, MDc 
  • aDepartment of Environmental Medicine, University of Southern Denmark, Odense, Denmark; b Department of Environmental Health, Harvard School of Public Health, Boston, MA, USA; c Icahn School of Medicine at Mount Sinai, New York, NY, USA

NOTE: This review received a mixed reaction from other scientists as you can see from this link but it is important to read and consider the evidence, reaction and implications for yourself

Opened up at request from SNJ via patientINFORM partnership

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pi: long term conditions

Children With Chronic Conditions: Ideas about Condition Management

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Journal of Pediatric Nursing

This report assesses the implications of a chronic, long-term medical condition from the perspective of a child. Through evaluating cases of varied conditions of children aged between 8-13, Barbara Beacham and Janet Deatrick seeks how best to manage chronic conditions within the contexts of family and childhood.

A central thread of this report argues the central importance of the child's views on condition management at a school age where they are growing in awareness as to the nature of their condition. Routines are argued as an important way of combining a child's need for consistency and clarity, with a family's need for manageability. Finally the report evaluates how best to involve a child in future planning, and how to inform them about the long-term implications of their condition.

Author: Barbara L. Beacham and Janet A. Deatrick, Article first published online: 10 NOV 2014

Publisher: ScienceDirect. Article opened up for free access at request from SNJ via patientINFORM
Volume 30, Issue 1, Pages 25–35, January–February 2015

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PI: Paediatric Medicine

Care taker blogs in caregiver fabricated illness in a child: a window on the caretaker’s thinking?

Child Abuse & Neglect Journal

Abstract

Three recently diagnosed cases of caregiver-fabricated illness in a child at Seattle Children's Hospital shed light on a new manifestation of their caretakers' attention seeking. The patients' mothers were actively blogging about their children's reputed illnesses. Although it is not uncommon for parents of chronically ill children to blog about their child's medical course, specific themes in these blogs of parents suspected of medically abusing their children were noted.

In particular, gross distortions of the information parents had received from medical providers were presented online, describing an escalation of the severity of their children's illnesses. The mothers reported contacting palliative care teams and Wish organizations, independently from their medical providers' recommendations. They sought on-line donations for their children's health needs. We believe these blogs provide additional direct evidence of the suspected caregivers' fabrications. Although we have not performed formal content analysis, blogs might also provide insight into the caretakers' motivations.

Protective Services and/or police investigators could consider querying the internet for blogs related to children at risk for caregiver-fabricated illness in a child. These blogs, if viewed in parallel with the children's medical records, could assist medical diagnosis and legal documentation of medical fabrication and assist in protective planning for the affected children.

Published by: Elsevier, opened up to free access at request from SNJ via patientINFORM

Read the whole article here: http://www.sciencedirect.com/science/article/pii/S0145213413003876

Child Abuse Negl. 2014 Mar;38(3):488-97. doi: 10.1016/j.chiabu.2013.12.002. Epub 2014 Jan 4.

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Common skin and bleeding disorders that can potentially masquerade as child abuse

American Journal of Medical Genetics partC seminars in Medical Genetics.

Common skin and bleeding disorders that can potentially masquerade as child abuse

 Introduction

This review documents a number of skin and bleeding disorders that can be mistaken for child abuse.  There is a detailed analysis of each condition and how it mimics child abuse.  The review cites a study of 2890 children evaluated for physical abuse reported that almost 5% of the children presented with physical abuse mimic.  There is a detailed discussion of a variety of skin and bleeding disorders which can present as suspected child abuse.  Skin lesions and bruising from child abuse is compared and contrasted to that seen in a variety of skin and bleeding disorders to aid clinicians in diagnosis.  The reviewer concludes that clinicians investigating child abuse need to be open minded in their diagnosis but must also not rule out child abuse in children with skin and bleeding disorders as the two can exist in the same child at the same time.

Publisher: Wiley Online Library. [AWAITING ACCESS] Article opened up to free access at request from SNJ via patientINFORM

Bhavita Patel and Rebecca Butterfield

Article first published online: 26 OCT 2015

American Journal of Medical Genetics partC seminars in medical Genetics Volume 169, Issue 4.

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31462/pdf  (PDF Text Link)

http://onlinelibrary.wiley.com/doi/10.1002/ajmg.c.31462/abstract (Abstract Link)

Improvement in functioning and psychological distress in adolescents with Postural Orthostatic Tachycardia Syndrome following interdisciplinary treatment

PATIENT RESEARCH

Clinical Pediatrics

This study involved 33 young people aged 11-18 with postural orthostatic tachycardia syndrome (POTS).  The 33 patients and their parents were put on an intensive 3 week outpatient rehabilitation program with the aim to improve the level of functioning of the patients, not to resolve POTS.

They found that the young people who had undertaken the program showed significant improvements in overall functional ability as well as a significant reduction in psychological distress.  As the authors note, the findings show immediate positive results but further follow up over time is needed to see the long term effects of the program.

Published by: SAGE journals, Article opened up to free access at request from SNJ via patientINFORM (awaiting access)

Read the whole article at : http://journals.sagepub.com/doi/pdf/10.1177/0009922816638663

 Volume: 55 issue: 14, page(s): 1300-1304 Article first published online: March 15, 2016;Issue published: December 1, 2016 DOI: https://doi.org/10.1177/0009922816638663

Barbara K. Bruce, PhD1[email protected], Tracy E. Harrison, MD1, Susan M. Bee, CNS1, Connie A. Luedtke, RN1, Co-Burn J. Porter, MD1, Philip R. Fischer, MD1, Sarah E. Hayes1, Daniel A. Allman1, Chelsea M. Ale, PhD1, Karen E. Weiss, PhD1

1Mayo Clinic, Rochester, MN, USA

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Social concerns in children being investigated for chronic intestinal pseudo-obstruction

PI-gastro

Journal of Pediatric Gastroenterology & Nutrition:

October 2015 - Volume 61 - Issue 4 - p 512
doi: 10.1097/01.mpg.0000472212.40680.46

Social concerns in children being investigated for chronic intestinal pseudo-obstruction

J, Brind1; E, Bowring1; K, Larmour1,2; H, Cronin1; L, Barkley2; A, Rybak1; E, Saliakellis1; KJ, Lindley1; O, Borrelli1; N, Thapar1

Read article: [Awaiting opening]

http://journals.lww.com/jpgn/Abstract/2015/10000/OP_8_SOCIAL_CONCERNS_IN_CHILDREN_BEING.34.aspx

J, Brind1; E, Bowring1; K, Larmour1,2; H, Cronin1; L, Barkley2; A, Rybak1; E, Saliakellis1; KJ, Lindley1; O, Borrelli1; N, Thapar1

PI: Rare Disease

Clinical management of achondroplasia

JOURNAL LOGO

Disease in Childhood Journal

Medical geneticists M. J. Wright and M. D. Irving offer a developmental assessment of the implication of achondroplasia in this wide-ranging study. Wright and Irving discuss a broad range of observable developments including:

  • Early stage care, including diagnosis
  • Normal developments with the condition
  • Complications
  • Neurological and respiratory issues
  • Practical and emotional support
  • Transitional care

Authors: M. J. Wright, M. D. Irving, Article first published online: 3 APR 2011

Publisher: BMJ Journals. 
Volume 97, Issue 2, pages 129-134, February 2012

[PENDING OPENING - CHECK BACK SOON]
The supportive care needs of parents caring for a child with a rare disease

patient inform logoDisability and Health Journal

This wide-ranging review of studies of parental needs dating between 1990-2014, finds numerous unmet needs for parents with children with rare conditions. These issues range through a lack of emotional support, poor communication on the part of medical professionals and the more specific needs to mitigate stress, pressure and anxiety. Using the Supportive Care Needs Framework (SCNF) as a reference, this comprehensive study finds a great deal of inefficiencies in the current support levels.

However although this report finds that in many cases the standards of the SCNF is not met, the report argues that the SCNF is itself not an ambitious enough standard of well-being for parents, and that in reality, parental needs require substantial further research and review.

Authors: Lemuel J. Pelentsov, Thomas A. Laws, Adrian J. Esterman, Article first published online: 7 APR 2015

Publisher: ScienceDirect, April 2015.

Article url:       http://www.disabilityandhealthjnl.com/article/S1936-6574(15)00045-X/abstract#/article/S1936-6574(15)00045-X/abstract  

Article DOI:    10.1016/j.dhjo.2015.03.009

Using Online Health Communication to Manage Chronic Sorrow: Mothers of Children with Rare Diseases Speak

patient inform logo

Journal of Pediatric Nursing

Rare diseases pose an intimidating challenge for both families and medical professionals: they are inherently subject to shortages of information and medical expertise. Adriana Glenn acknowledges that in too many situations, this places immense strain on the family sphere; in many cases the mother especially. However Glenn notes that increasingly online communication methods are allowing mothers to manage their struggles and collectively pool their experience.

This study is built on a series on interviews with 16 mothers of children with the rare Alagille syndrome. It concludes that the "e-Health" environment has great potential to improve the coping strategies of families in the situations rare conditions impose. Through her interviews Glenn notes that themes of connectedness and empowerment make online communication "essential" to the rare disease community. Moreover Glenn argues that the success of the internet is a result of inadequate emotional support for mothers, and that support in accessing the correct online materials could help the situation further.

Author: Adriana D. Glenn, Article first published online: 13 SEP 2014

Publisher: ScienceDirect
Volume 30, Issue 1, Pages 17–24, January–February 2015.

Opened up at request from SNJ via patientINFORM partnership

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PI:SEN

Inclusive special education: development of a new theory for the education of children with SEND

BJSE

British Journal of Special Education

Inclusive special education: development of a new theory for the education of children with SEND

Garry Hornby argues that cultural evolution is required if SEND outcomes are to be improved, in this thoroughly visionary thesis. He argues that answer to improving educational outcomes is not inclusive education, nor special education (two approaches Hornby argues are increasingly contrasting), but inclusive special education.

Hornby's strategic theory of SEND teaching amalgamates the the philosophy, values and practices of inclusive education with the interventions, strategies and procedures of special education. The ambition is to achieve support without isolation, a social experience without endangering the child's medical needs. Hornby hopes to influence future policy, and represent a model for teaching strategy.

Authors: Garry Hornby, Article first published online: 18 JUN 2015

Publisher: Wiley Online Library. 
Article available on Researchgate

Read the article  here.

The placement of statemented secondary school students in the diversified system of English schooling

BJSEBritish Journal of Special Education

This reports observes the distribution of statemented SEN placements in secondary schools, and how this varies across academies (both "sponsored" - often failing schools that are coerced into the academy model - and "converter" academies - those that chose to convert towards an academy system), mainstream schools, technical colleges and the newly created free schools. Brahm Norwich and Alison Black assess the enrolment data for both the 2013/4 and the 2014/5 academic years.

They find that converter academies possess a markedly smaller percentage of statemented students versus sponsored academies or schools still under local authority control. Sporadically, free schools can sometimes possess unusually large numbers of statemented students, which is something Norwich and Black discuss in relation to the observed greater likelihood of inclusiveness in smaller schools.

Authors: Brahm Norwich and Alison Black, Article first published online: 3 JUN 2015

Publisher: Wiley Online Library. [Awaiting opening, please check back soon!]
Volume 42, Issue 2, pages 128–151, June 2015

Read the article abstract here.

 

PI: Therapy

A wellness program for individuals with disabilities: Using a student wellness coach approach

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Disability and Health Journal

Disabilities make individuals more susceptible to lapses in health and degradation of condition, and it is viewed as essential by this report to improve the preventative methods that are currently in use. This report assesses the effects and viability of one technique in particular: an assigned student wellness coach. On the surface of things, twinning a student pre-healthcare worker with a disabled person seems likely both to improve preventative care and provide experience to future clinical healthcare professionals: this research paper sought to affirm this logic with a trial program.

This study analyzes the effects of a three month program in which 32 student wellness coaches, aged between 19 and 23, attended the needs of 15 people with disabilities aged between 28 and 74. The study observes weight loss in the disabled participants, greater functionality, fitness and universal satisfaction with the program. Overall the study notes that this trial demonstrated a great deal of benefit and feasibility.

Authors: Hui-Ju Young, Melissa L. Erickson, Kristen B. Johnson, Mary Ann Johnson, and Kevin K. McCully, Article first published online: 12 MAR 2014

Publisher: Disability & Health Journal, ScienceDirect.
Volume 8, Issue 3, Pages 345–352, July 2015

Opened up at request from SNJ via patientINFORM partnership

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Efficacy and safety of acupuncture in children: an overview

Pediatric Research

This reports represents one of the largest observations of pediatric acupuncture outcomes of recent years, and comes in response to an increased prominence in the usage of acupuncture in pediatric health care. The authors draw from 24 systematic reviews, comprising of 142 randomized controlled trials with 12,787 participants - albeit only a fraction of these trials are actively used in forming conclusions.

Outcomes are assessed in a huge variety of conditions, ranging from myopia, through cerebral palsy, to mumps. Overall, the report does not find evidence of marked improvements to condition, although some improvements are found in some cases, such as cerebral palsy and tic disorders, and conversely, acupuncture is only found to cause harm in a very same number of cases.

Authors: Chunsong Yang, Zilong Hao, Ling-Li Zhang and Qin Guo, Article first published online: 17 JUN 2015

Publisher: Nature Publishing Group.  Opened up at request from SNJ via patientINFORM partnership
Volume 78, Issue 2, pages 112–119, August 2015

Read the article here.

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Treating a child with cerebral palsy using the ‘Rhythmical Intention’ method

The Institute for Movement Therapy and School for ‘Conductors’

This report describes how it is possible for Prof. Petö, at the Institute for Movement Therapy and School for ‘Conductors’ in Budapest, to combine, in the hands of one person, the treatment, education and management of a child with cerebral palsy by using the method of ‘Rhythmical Intention’.

In this way, 4–5 hours of physical treatment a day can be combined with several hours of academic and general teaching, thus educating the children up to the normal standard of the Hungarian schools. After 2–3 years' residential care the children are returned to their parents and are expected to attend normal school. All cases are severe, but hardly any calipers or operations are used, the approach being neurophysiological.

Author: Ester Cotton MCSP. 1965, Article first published online: 12 NOV 2008

Publisher: Developmental Medicine & Child Neurology. 
Volume 7, Issue 4, pages 437–446, August 1965

Read the article abstract here: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1965.tb08241.x/abstract

Read the article PDF here: http://onlinelibrary.wiley.com/doi/10.1111/j.1469-8749.1965.tb08241.x/pdf

Opened up at request from SNJ via patientINFORM partnership

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pi:undiagnosed

Respectful communication by geneticists important for parents of children with Undiagnosed Disorders

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The American Journal of Medical Genetics

This report argues that mutual respect should structure the relationship between geneticists and the parents of children with undiagnosed conditions. A panel of three mothers is interviewed as geneticists seek to improve the productivity of their discussions with families. The two main themes examined are those of respect and language. In terms of the latter, the article argues the need successfully to balance easy-to-understand language with the need to express the full extent of the medical situation. It subsequently advises the importance of people skills in overcoming this trade-off.

However, perhaps the most central point the report makes is the need to respect the parent's own knowledge and research of their child's situation. It subsequently makes the profound point that case comparison cannot be fully helpful in such scenarios.

Author: American College of Medical Genetics and Genomics (ACMG), Article first published online: 15 NOV 2015
Publisher: Developmental Medicine & Child Neurology. Opened up at request from SNJ via patientINFORM partnership

Volume 167, Issue 7, pages 8-9, July 2015.

[Editor's note: Our SNJ columnist and Just Bring The Chocolate blogger, Renata Blower, was recently instrumental in launching the first dedicated nursing role for undiagnosed children at the Great Ormond Street Hospital, funded by the Roald Dahl's Marvellous Children's Charity ]

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