Clinical focus

Tool Development

Everything on the hub tagged Tool Development: researchers, groups, current studies, resources and published literature together.

62 results

Researchers

Marta Salek

St. Jude Children's Research Hospital · United States

Miriam George

Kotagiri Medical Fellowship Hospital · India

Rebecca Singer Cohen

Johns Hopkins School of Nursing · United States

Filter the directory by Tool Development →

Published literature

Advancing Advance Care Planning: Evaluating a Revised Version of Voicing My CHOiCES

Bedoya S, Gordon M, Zabokrtsky K, Kasper K, Frediani J, Ruble K, Ciampa D, Moynihan L, Pao M, Wiener L · Journal of Palliative Medicine · 2024

Advancing the science of outcome measurement in paediatric palliative care

Harding R, Chambers L, Bluebond-Langner M · International journal of palliative nursing · 2019

Analysis of the surprise question as a tool for predicting death in neonates

Asenjo S, Soler-Garcia A, Morillo-Palomo A, Habimana-Jordana A, Guillen M, Bolance C, Navarro-Vilarrubi S · European Journal of Pediatrics · 2025

An Intervention in Congruence for End-of-Life Treatment Preference: A Randomized Trial

Baker J, Friebert S, Needle J, Jiang J, Wang J, Lyon M · Pediatrics. · 2022

A Qualitative Study of Clinicians and Parents of Children with Severe Neurological Impairment on Tools to Support Family-Centered Care

Lewis H, Trowbridge A, Jonas D, Rosenberg A, Bogetz J · Journal of palliative medicine · 2022

A review of instruments measuring the basic knowledge of palliative care concepts in teenagers

Elder A · Illness, Crisis, & Loss · 2024

Assessing the feasibility of use and content validity of ICECAP-CPM with bereaved family members of young people who died from serious illness: a UK think-aloud study

Floredin I, Mitchell P, Husbands S, Neilson S, Coast J · BMC palliative care · 2026

Communicating after the Death of a Child: Bereaved Parent Insights on the GRIEV_ING Framework

Baker L, Gagne-Loparo K, Stern N, Rouchou B, Remy A, Anderson I · Journal of Palliative Medicine · 2025

Delphi Method to Develop a Palliative Care Tool for Children and Families in Sub-Saharan Africa

Chinyundo K, Casas J, Bank R, Abenawe C, Gaolebale B, Nakirulu A, Maifale-Mburu G, Hesselgrave J, Butia M, Bakulumpagi D, Nassanga I, Higgins J, Hockenberry M · J Pain Symptom Manage · 2022

Designing and maturing the OKRA-Compass for breaking bad news in the German pediatric oncology setting: A participatory action research study

Dittmer K, Vitinius F, Hamm I, Dabritz T, Hanse S, Hoemberg M, Lorenz A, Misgeld R, Paul N, Stamm W, Krieger T · Patient Education and Counseling · 2025

Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care

Donnelly J, Downing K, Cloen J, Fragen P, Gupton A, Misasi J, Michelson K · J Pain Symptom Manage · 2017

Development and psychometric validation of the family-centered multidimensional outcome measure for pediatric palliative care targeted to children with severe neurological impairmentis-A multicenter prospective study

Pelke S, Wager J, Claus B, Zernikow B, Reuther M · Palliat Med · 2020

Development and Testing of VOICES-C: A Questionnaire for Assessing the Quality and Experiences of End-of-Life Care for Children and Their Families

Hunt K, Wright D, Almahadeen R, Dijkstra J, Wagland R, Randall D, Uhm S, Richardson A, Darlington A · Journal of Palliative Care · 2026

Development and validation of pediatric opioid analgesia self-instruction system (pedoasis): An opioid knowledge tool for pediatric clinicians

MacDonell-Yilmaz R, Anderson A, Hirway P, Welch J · Journal of Pediatric Hematology/Oncology. · 2021

Development of an instrument to measure stress in Korean nurses performing end-of-life care for children

Park S, Ju H · Journal of Pediatric Nursing · 2020

Development of a parent survey to identify children with severe neurologic impairment and distress

Herold B, Dussel V, Hauer J, Requena M, DeCourcey D, Avery M, Snaman J, Wolfe J · Journal of Pain and Symptom Management · 2026

Development of Patient-Centered End-of-Life Care Quality Measures in China: A Modified Delphi Process

Li L, Gong X · Journal of palliative care · 2024

Development of the Korean version of the Children's Palliative care Outcome Scale

Kim E, Kim S, Braybrook D, Min H, Lee Y, Harding R · Journal of pain and symptom management · 2026

Digital decision aid for prenatal counseling in imminent extreme premature labor: development and pilot testing

van den Heuvel J, Hogeveen M, Lutke Holzik M, van Heijst A, Bekker M, Geurtzen R · BMC medical informatics and decision making · 2022

Evaluating the reliability and validity of a new pediatric palliative care needs assessment tool

Michelson K, Downing K, Rudnik M, Cloen J, Donnelly J · Journal of Pain and Symptom Management · 2016

Evaluating the validity, reliability and clinical utility of the Music therapy Sensory Instrument for Cognition, Consciousness and Awareness (MuSICCA): protocol of a validation study

Pool J, Siegert R, Taylor S, Dunford C, Magee W · BMJ Open · 2020

Experiences with an Advance Care Planning Intervention for Children with Life-Limiting Conditions: A Qualitative Study of Families and Clinicians Using the IMplementing Pediatric Advance Care Planning Toolkit +

Fahner J, van Delden J, Rietjens J, van der Heide A, Kars M · Children · 2026

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries

Namisango E, Bristowe K, Murtagh F, Downing J, Powell R, Atieno M, Abas M, Ali Z, Luyirika E, Meiring M, Mwangi-Powell F, Higginson I, Harding R · Palliative Medicine · 2022

Healthcare provider’s perceptions of family values when making end-of-life care decisions for their children: developing and implementing a survey tool

Sivakumar N, Kukora S, Ginwalla C, Lakshminrusimha S, Rosenthal J · Palliative Care and Social Practice · 2026

[IMPaCCT: standards of paediatric palliative care]

Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris P, Zernikow B · Der Schmerz · 2008

Implementing the PAR Scale in a Pediatric Concurrent Care Setting: A Quality Improvement Project

Ronne T, Cahill A, Horst K, Struwe L, Gonzales K · Journal of hospice and palliative nursing : JHPN : the official journal of the Hospice and Palliative Nurses Association · 2026

Japanese Version of the Quality of Dying and Death in the PICU Instrument: Development and Validation in Eight Centers in Japan

Takayama A, Kawaguchi A, Irie W, Miyashita M, Yamaguchi T, Yotani N, Shiwaku H · Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2026

Methods to Assess Adverse Childhood Experiences of Children and Families: Toward Approaches to Promote Child Well-being in Policy and Practice

Bethell C, Carle A, Hudziak J, Gombojav N, Powers K, Wade R, Braveman P · Acad Pediatr · 2017

MyPal-Child study protocol: an observational prospective clinical feasibility study of the MyPal ePRO-based early palliative care digital system in paediatric oncology patients

Meyerheim M, Karamanidou C, Payne S, Garani-Papadatos T, Sander A, Downing J, Stamatopoulos K, Ling J, Payne C, Scarfò L, Lokaj P, Maramis C, Graf N · BMJ Open · 2021

Opening end-of-life discussions: how to introduce Voicing My CHOiCESTM, an advance care planning guide for adolescents and young adults

Zadeh S, Pao M, Wiener L · Palliative & Supportive Care · 2015

Outcome measurement in paediatric palliative care: lessons from the past and future developments

Downing J, Namisango E, Harding R · Ann Palliat Med · 2018

Palineo score: development of a score to identify the palliative care needs of neonatal patients admitted to the neonatal intensive care unit

Barbosa S, Santana V, Goncalves C, Santos E, Takahashi P, Costa P, Alves K, Lebrao C, Castro A · Critical Care Science · 2025

Palliative Care in Children with Severe Neurological Impairment: The PediQUEST Refine Case Series

Snaman J, Requena M, Avery M, Herold B, Balossi M, DeCourcey D, Hauer J, Dussel V, Wolfe J · Journal of pain and symptom management · 2026

Parental Perceptions of the Impact of a Child’s Complex Chronic Condition: A Validation Study of the Impact on Family Scale

Alves S, Braz A, Graça L, Fontaine A · International Journal of Environmental Research and Public Health · 2024

Pediatric Palliative Care: Insights into Assessment Tools andReview Instruments

Papa S, Mercante A, Giacomelli L, Benini F · Children (Basel) · 2023

Pediatric Palliative Symptom Categories for (e)PROM in specialized pediatric palliative home care

Hocher R, Ruthke N, Busse T, Ghori S, Krumpelmann S, Messerschmidt C, Nathrath M, Vaillant V, Voelker T, Voelzke A, Zimmermann J, Deckers M · Journal of pain and symptom management · 2026

Performance of Pediatric Risk of Mortality Score Among Critically Ill Children With Heart Disease

Russell R, Rettiganti M, Brundage N, Jeffries H, Gupta P · World J Pediatr Congenit Heart Surg. · 2017

Point-of-Care Complexity Screening Algorithm to Identify Children With Medical Complexity

Parente V, Parnell L, Childers J, Spears T, Jarrett V, Ming D · Hosp Pediatr · 2021

Predicting grief intensity after recent perinatal loss

Hutti M, Myers J, Hall L, Polivka B, White S, Hill J, Kloenne E, Hayden J, Grisanti M · J Psychosom Res · 2017

Predictive Ability of an Illness Severity Measure: Implications for Nursing Research

Lindley L, Fortney C, Cozad M · Journal of Nursing Measurement · 2021

Psychometrics assessment of ethical decision-making around end-of-life care scale for adolescents in the final stage of life

Mohammadi F, Masoumi S, Khazaei S, Hosseiny S · Frontiers in Pediatrics · 2023

Quality-of-Life Assessment in Pediatric Advanced Cancer: Development of the Patient-Reported Outcome Measure Advance QoL

Robichaud L, Felipe J, Duval M, Michon B, Olivier-D'Avignon M, Perreault S, Tyo-Gomez M, Marquis M, Sultan S · Curr Oncol · 2024

Reliability and predictive validity of the Standardized Infant NeuroDevelopmental Assessment neurological scale

Hadders-Algra M, Tacke U, Pietz J, Rupp A, Philippi H · Developmental Medicine and Child Neurology · 2019

Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement

Hamilton C, Hoens A, McKinnon A, McQuitty S, English K, Hawke L, Li L · Health Expectations · 2021

Spanish adaptation of the Perinatal Grief Intensity Scale

Fernández-Alcántara M, Madrid-Valero J, Esteban-Burgos A, Congost-Maestre N, Oliver-Roig A, Cabañero-Martínez M · Journal of Reproductive and Infant Psychology · 2025

Subcutaneous Drug Administration in Pediatric Palliative Home Care: A Multicenter Prospective Study

Riva de la Hoz B, de Miguel M, Gorbe C, Tristancho-Perez A, Garcia-Palop B, Corro B, Nogue-Pujadas E, Bosch-Peligero M, Zurbano R, Yunquera-Romero L, Garcia-Lopez I · Journal of Pain & Symptom Management · 2026

Tailoring support for parents of children in palliative care: Feasibility of the carer support needs assessment tool intervention paediatric in a Norwegian context

Trae G, Winger A, Nordstrøm M · Palliative Care and Social Practice · 2026

The development and evaluation of a holistic needs assessment within children's palliative care

Hartley G, Berger Z, Maynard L · Int J Palliat Nurs · 2016

The Home-based Experiences of Palliative and Hospice Care for Children and Caregivers (EXPERIENCE) Measure: Evaluation of psychometric properties

Boyden J, Ersek M, Widger K, Shea J, Feudtner C · Journal of pain and symptom management · 2024

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

Olivier d'avignon M, Dumont S, Valois P, Cohen S · Palliat Support Care · 2016

The Psychological Experience of Grandparents: Proposal of a Qualitative Clinical Assessment Tool in Pediatric Palliative Care

Nogueira A, Ribeiro M · Clinics and Practice · 2024

The ROAR Score: Quantifying Risk of Acute Return to the Hospital in Pediatric Hospice Patients

Maddox K, Newcomer K · Journal of Pain and Symptom Management · 2024

The spectrum of children's palliative care needs-a useful tool?

Azim H · Archives of Disease in Childhood · 2016

Translation and cultural adaptation of the Italian version of the Paediatric Palliative Screening Scale

De Zen L, Peri F, Catalano I, Gabrielli M, Rizzi B, Valente E, Zamagni G, Recchia A, Visconti G, Pellegatta F · European Journal of Pediatrics · 2024

Unidentified paediatric palliative needs: use of the Paediatric Palliative Screening Scale

Preto C, Condeco L · International Journal of Palliative Nursing · 2026

Use of the interRAI PEDS HC in children receiving home care in Ontario, Canada

Thorburn-Winsor E, Doherty M, Jones A, Vadeboncoeur C · BMC health services research · 2022

[Validation of the European Portuguese Version of a Pediatric Palliative Needs Assessment Tool: The Pediatric Palliative Screening Scale]

Simoes M, Tavares F, Machado M · Validacao da Versao Portuguesa de um Instrumento de Avaliacao de Necessidades Paliativas Pediatricas: A Pediatric Palliative Screening Scale. · 2023

Validation of the FACETS-OF-PPC as an Outcome Measure for Children with Severe Neurological Impairment and Their Families-A Multicenter Prospective Longitudinal Study

Pelke S, Wager J, Claus B, Stening K, Zernikow B, Reuther M · Children (Basel) · 2021

Validation of the Turkish adaptation of FACETS-OF-PPC: a multidimensional outcome measure for pediatric palliative care

Oztek Celebi F, Bozdag Y, Boybeyi S, Oguz M, Altinel Acoglu E, Senel S, Sahin S · Frontiers in oncology · 2025

Filter the literature by Tool Development →