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

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

(2017) Andreas Hinz et al.   JOURNAL OF AFFECTIVE DISORDERS

A window into living with an undiagnosed disease: illness narratives from the Undiagnosed Diseases Network

(2017) Rebecca C. Spillmann et al.   Orphanet Journal of Rare Diseases

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

(2017) Yvonne Zurynski et al.   Orphanet Journal of Rare Diseases

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

(2016) Jacob J. van den Berg et al.   AIDS PATIENT CARE AND STDS

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

(2016) Allyn McConkie Rosell et al.   Journal of Genetic Counseling

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

(2016) Tatiane Yanes et al.   Journal of Genetic Counseling

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

(2015) Jessica X. Chong et al.   AMERICAN JOURNAL OF HUMAN GENETICS

Parent distress reactions following a serious illness or injury in their child: a protocol paper for the take a breath cohort study

(2015) Frank Muscara et al.   BMC Psychiatry

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

(2015) M. Lingen et al.   CLINICAL GENETICS

Mothers’ psychological adaptation to Duchenne/Becker muscular dystrophy

(2015) Holly L Peay et al.   EUROPEAN JOURNAL OF HUMAN GENETICS

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

(2015) F. Muscara et al.   EUROPEAN PSYCHIATRY

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

(2015) Aris Angelis et al.   HEALTH POLICY

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

(2015) M. A. Waszczuk et al.   PSYCHOLOGICAL MEDICINE

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

(2015) Lemuel J. Pelentsov et al.   Disability and Health Journal

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

(2015) Pierre-Cédric B. Crouch et al.   PeerJ

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest

(2014) Jill M. G. Bally et al.   Journal of Family Nursing

“Is it Going to Hurt?”: The Impact of the Diagnostic Odyssey on Children and Their Families

(2014) Nikkola Carmichael et al.   Journal of Genetic Counseling

Standardization of the depression screener Patient Health Questionnaire (PHQ-9) in the general population

(2013) Rüya-Daniela Kocalevent et al.   GENERAL HOSPITAL PSYCHIATRY

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

(2013) Noemí Guillamón et al.   JOURNAL OF CLINICAL NURSING

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

(2012) Anne C. Madeo et al.   AMERICAN JOURNAL OF MEDICAL GENETICS PART A

Clinical application of exome sequencing in undiagnosed genetic conditions

(2012) Anna C Need et al.   JOURNAL OF MEDICAL GENETICS

Advances in the Conceptualization and Measurement of Health Care Empowerment: Development and Validation of the Health Care Empowerment Inventory

(2012) Mallory O. Johnson et al.   PLoS One

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

(2011) Megan Truitt et al.   PATIENT EDUCATION AND COUNSELING

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

(2011) Tanja Besier et al.   PEDIATRIC PULMONOLOGY

The Shifting Landscape of Health Care: Toward a Model of Health Care Empowerment

(2010) Mallory O. Johnson   AMERICAN JOURNAL OF PUBLIC HEALTH

Living Without a Diagnosis: The Parental Experience

(2010) Celine Lewis et al.   Genetic Testing and Molecular Biomarkers

Caregiver's Burden and Quality of Life in Mitochondrial Disease

(2010) Kyung Ran Kim et al.   PEDIATRIC NEUROLOGY

Differences on Psychosocial Outcomes Between Male and Female Caregivers of Children With Life-Limiting Illnesses

(2010) Monica Schneider et al.   Journal of Pediatric Nursing-Nursing Care of Children & Families

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

(2009) Kimberly A. Driscoll et al.   PEDIATRIC PULMONOLOGY

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

(2009) Diane Pelchat et al.   Journal of Child Health Care