(Q47664781)

4 February 2018

title

Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing? (English)

1 reference

4 February 2018

Undiagnosed Diseases Network

author

8

object named as

Undiagnosed Diseases Network

1 reference

4 February 2018

Stephen R. Hooper

2

object named as

Stephen R Hooper

1 reference

4 February 2018

author name string

Allyn McConkie-Rosell

1

1 reference

4 February 2018

Loren D M Pena

3

1 reference

4 February 2018

Kelly Schoch

4

1 reference

4 February 2018

Rebecca C Spillmann

5

1 reference

4 February 2018

Yong-Hui Jiang

6

1 reference

4 February 2018

Heidi Cope

7

1 reference

4 February 2018

Christina Palmer

9

1 reference

4 February 2018

Vandana Shashi

10

1 reference

4 February 2018

publication date

2 January 2018

1 reference

4 February 2018

Journal of Genetic Counseling

published in

1 reference

4 February 2018

Parent Perspective on Care Coordination Services for Their Child with Medical Complexity

cites work

1 reference

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29 September 2018

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Australian children living with rare diseases: experiences of diagnosis and perceived consequences of diagnostic delays

29 September 2018

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"It goes against the grain": A qualitative study of the experiences of parents' administering distressing health-care procedures for their child at home.

29 September 2018

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The role of coping strategies and self-efficacy as predictors of life satisfaction in a sample of parents of children with autism spectrum disorder.

29 September 2018

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Psychometric evaluation of the Generalized Anxiety Disorder Screener GAD-7, based on a large German general population sample

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Factors Associated with Parental Adaptation to Children with an Undiagnosed Medical Condition

29 September 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Using Path Analysis to Evaluate the Healthcare Empowerment Model Among Persons Living with HIV for Antiretroviral Therapy Adherence

29 September 2018

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The nuanced negative: Meanings of a negative diagnostic result in clinical exome sequencing

29 September 2018

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Not the End of the Odyssey: Parental Perceptions of Whole Exome Sequencing (WES) in Pediatric Undiagnosed Disorders

29 September 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

The stability and change of etiological influences on depression, anxiety symptoms and their co-occurrence across adolescence and young adulthood

29 September 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Mothers' psychological adaptation to Duchenne/Becker muscular dystrophy

29 September 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

The Genetic Basis of Mendelian Phenotypes: Discoveries, Challenges, and Opportunities

29 September 2018

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Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a Breath Cohort Study.

29 September 2018

1 reference

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Obtaining a genetic diagnosis in a child with disability: impact on parental quality of life

29 September 2018

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The supportive care needs of parents caring for a child with a rare disease: A scoping review

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

A pilot study to evaluate the magnitude of association of the use of electronic personal health records with patient activation and empowerment in HIV-infected veterans

29 September 2018

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https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Socio-economic burden of rare diseases: A systematic review of cost of illness evidence

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Early psychological reactions in parents of children with a life threatening illness within a pediatric hospital setting.

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

"Is it going to hurt?": the impact of the diagnostic odyssey on children and their families

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Standardization of the depression screener patient health questionnaire (PHQ-9) in the general population

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Quality of life and mental health among parents of children with cerebral palsy: the influence of self-efficacy and coping strategies

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Advances in the conceptualization and measurement of Health Care Empowerment: development and validation of the Health Care Empowerment inventory

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Clinical application of exome sequencing in undiagnosed genetic conditions

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

The role of hope in adaptation to uncertainty: the experience of caregivers of children with Down syndrome

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Psychometric comparison of the generalized anxiety disorder scale-7 and the Penn State Worry Questionnaire for measuring response during treatment of generalised anxiety disorder

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Differences on psychosocial outcomes between male and female caregivers of children with life-limiting illnesses

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Anxiety, depression, and life satisfaction in parents caring for children with cystic fibrosis

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Living without a diagnosis: the parental experience.

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Caregiver's burden and quality of life in mitochondrial disease

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

How do mothers and fathers who have a child with a disability describe their adaptation/ transformation process?

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

A validity and reliability study of the coping self-efficacy scale

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

A brief measure for assessing generalized anxiety disorder: the GAD-7.

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Stress and well-being among parents of children with rare diseases: a prospective intervention study

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Understanding the narratives of people who live with medically unexplained illness

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Parental attitudes toward a diagnosis in children with unidentified multiple congenital anomaly syndromes.

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

The PHQ-9: validity of a brief depression severity measure

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Stress and family functioning in parents of girls with Rett syndrome

29 September 2018

1 reference

https://eutils.ncbi.nlm.nih.gov/entrez/eutils/elink.fcgi?dbfrom=pmc&linkname=pmc_refs_pubmed&retmode=json&id=6028305

Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis

29 September 2018

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/29297108

12 December 2020

inferred from PubMed ID database lookup

The shifting landscape of health care: toward a model of health care empowerment

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/29297108

12 December 2020

inferred from PubMed ID database lookup

Factors associated with perceived uncertainty among parents of children with undiagnosed medical conditions

1 reference

PubMed

https://pubmed.ncbi.nlm.nih.gov/29297108

12 December 2020

inferred from PubMed ID database lookup

Identifiers

DOI

10.1007/S10897-017-0193-5

1 reference

4 February 2018

release_7wx2h7owwnds3lpt5o4sbo2x3i

Fatcat ID

1 reference

Fatcat

https://api.fatcat.wiki/v0/release/7wx2h7owwnds3lpt5o4sbo2x3i

24 November 2022

mapped directly with Wikidata item

PMC publication ID

6028305

0 references

1 reference

4 February 2018