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Living with a rare disease - experiences and needs in pediatric patients and their parents
16 references·0 citing·46 second hop
Living with a rare disease - experiences and needs in pediatric patients and their parents (2023)Living with a rare disease - experiences …Analyzing Qualitative Data with MAXQDA (2019)Analyzing Qualitative Data wi…Parenting stress in caregivers of children with chronic physical condition—A meta‐analysis (2017)Parenting stress in caregiver…Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research (2016)Annual Research Review: Quali…The supportive care needs of parents caring for a child with a rare disease: A scoping review (2015)The supportive care needs of …Qualitative Research: Data Collection, Analysis, and Management (2015)Qualitative Research: Data Co…Anxiety and Depression in Mothers and Fathers of a Chronically Ill Child (2014)Anxiety and Depression in Mot…Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature (2013)Parents' experiences of livin…Grounded Theory for Qualitative Research: A Practical Guide (2013)Grounded Theory for Qualitati…Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support (2013)Australian families living wi…Children and young people's experiences of cancer care: A qualitative research study using participatory methods (2010)Children and young people's e…Psychosocial adjustment of siblings of children with cancer: a systematic review (2009)Psychosocial adjustment of si…The psychosocial well‐being of children with chronic disease, their parents and siblings: an overview of the research evidence base (2006)The psychosocial well‐being o…Stress and well‐being among parents of children with rare diseases: a prospective intervention study (2006)Stress and well‐being among p…Striving to Survive: Families’ Lived Experiences When a Child Is Diagnosed With Cancer (2005)Striving to Survive: Families…Understanding the impact of stigma on people with mental illness. (2002)Understanding the impact of s…Families coping with childhood chronic illness: A research review. (1999)Families coping with childhoo…Nature of Prejudice (1954)The Paradox of Self-Stigma and Mental Illness (2002)The stigma of mental illness: effects of labelling on public attitudes towards people with mental disorder (2003)Public beliefs about and attitudes towards people with mental illness: a review of population studies (2005)The Stigma of Alcohol Dependence Compared with Other Mental Disorders: A Review of Population Studies (2010)Qualitative research and evaluation methods (1980)Naturalistic inquiry (1985)Basics of Qualitative Research: Grounded Theory Procedures and Techniques. 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(2003)Implementing patient-reported outcomes assessment in clinical practice: a review of the options and considerations (2011)The supportive care needs of parents with a child with a rare disease: results of an online survey (2016)Whatever happened to qualitative description? (2000)Scoping studies: towards a methodological framework (2005)Social isolation and exclusion: the parents' experience of caring for children with rare neurodevelopmental disorders (2020)The Multidimensional Scale of Perceived Social Support (1988)A power primer. (1992)Trim and Fill: A Simple Funnel‐Plot–Based Method of Testing and Adjusting for Publication Bias in Meta‐Analysis (2000)Featured Article: Depressive Symptoms in Parents of Children With Chronic Health Conditions: A Meta-Analysis (2018)Children with a rare congenital genetic disorder: a systematic review of parent experiences (2022)Parent, child, and situational factors associated with parenting stress: a systematic review (2022)A systematic literature review exploring uncertainty management and sustainability outcomes in circular supply chains (2021)A dozen effective interventions to reduce car use in European cities: Lessons learned from a meta-analysis and transition management (2022)Applying a business simulation game in a flipped classroom to enhance engagement, learning achievement, and higher-order thinking skills (2022)Grounded theory in software engineering research (2016)Using conceptual depth criteria: addressing the challenge of reaching saturation in qualitative research (2016)Value co-creation practices in business-to-business platform ecosystems (2019)
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References

  • 2002Understanding the impact of stigma on people with mental illness.1,786 cited
  • 2015Qualitative Research: Data Collection, Analysis, and Management1,172 cited
  • 2013Grounded Theory for Qualitative Research: A Practical Guide1,041 cited
  • 2019Analyzing Qualitative Data with MAXQDA983 cited
  • 2006The psychosocial well‐being of children with chronic disease, their parents and siblings: an overview of the research evidence base444 cited
  • 2009Psychosocial adjustment of siblings of children with cancer: a systematic review442 cited
  • 2017Parenting stress in caregivers of children with chronic physical condition—A meta‐analysis342 cited
  • 2013Australian families living with rare disease: experiences of diagnosis, health services use and needs for psychosocial support325 cited
  • 2015The supportive care needs of parents caring for a child with a rare disease: A scoping review311 cited
  • 2006Stress and well‐being among parents of children with rare diseases: a prospective intervention study299 cited
  • 2013Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature259 cited
  • 1999Families coping with childhood chronic illness: A research review.230 cited
  • 2010Children and young people's experiences of cancer care: A qualitative research study using participatory methods204 cited
  • 2005

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Striving to Survive: Families’ Lived Experiences When a Child Is Diagnosed With Cancer
203 cited
  • 2016Annual Research Review: Quality of life and childhood mental and behavioural disorders – a critical review of the research164 cited
  • 2014Anxiety and Depression in Mothers and Fathers of a Chronically Ill Child147 cited
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