Kontakt 2024, 26(4):347-353 | DOI: 10.32725/kont.2024.048

Language validation of a measurement instrument to assess the needs of parents and children in palliative care - a pilot studyNursing - Original article

Petra Růžičková *, Radka Bužgová
University of Ostrava, Faculty of Medicine, Department of Nursing and Midwifery, Ostrava, Czech Republic

Introduction: Pediatric palliative care is a specialized form of care provided to children with terminal illnesses or life-threatening conditions. Its aim is not only to control symptoms, but also to improve the overall quality of life of the child and its family. It includes comprehensive support and care that respects the individual needs of the child and its family, including physical, emotional, social, and spiritual aspects.

Objective: To translate and implement the language validation of the Pediatric Palliative Care - Parent & Child Needs Survey (PCNeeds) tool and to determine the level of needs of families caring for a child with a life-limiting or life-threatening illness.

Methods: To determine the needs of parents of children in palliative care, a quantitative method of a questionnaire survey was used in which 20 parents participated. Data analysis was carried out using descriptive statistics.

Results: The highest level of needs of families was in the area of coping with the child's symptoms, including pain. Parents felt emotional strain, social isolation, and overall pressure on the family, including financial burden. However, they also expressed a high degree of satisfaction in many areas, such as communication with health professionals, clarity of information, and the relationship with their child.

Conclusion: The study demonstrated the high internal consistency of the Czech version of the PCNeeds measurement instrument. It will be further tested for psychometric properties in the next stage of the research.

Keywords: Assessment tool; Children; Needs; Palliative care; Parents
Grants and funding:

The research was supported by the Student Grant Competition SGS24/LF/2023: Assessment of the needs of parents of children in palliative care.

Conflicts of interest:

The study design was approved by the Ethics Committee of the Faculty of Medicine of the University of Ostrava (5/2023). The authors declare that the study has no conflict of interest.

Received: May 5, 2024; Revised: August 1, 2024; Accepted: October 14, 2024; Prepublished online: October 23, 2024; Published: December 17, 2024  Show citation

ACS AIP APA ASA Harvard Chicago Chicago Notes IEEE ISO690 MLA NLM Turabian Vancouver
Růžičková P, Bužgová R. Language validation of a measurement instrument to assess the needs of parents and children in palliative care - a pilot study. Kontakt. 2024;26(4):347-353. doi: 10.32725/kont.2024.048.
Share...
Download citation
  • BibTeX (.bib)
  • Bookends (.ris)
  • EasyBib (.ris)
  • EndNote (.enw)
  • EndNote 8 (.xml)
  • ISI WoS (.isi)
  • Medlars (.medlars)
  • Mendeley (.ris)
  • MODS (.xml)
  • Papers (.ris)
  • RefWorks (.txt)
  • RefManager (.ris)
  • RIS (.ris)
  • MS Word (.xml)
  • Zotero (.ris)
    • Open full article

    References

    1. Adistie F, Lumbantobing VBM, Maryam NNA (2020). The Needs of Children with Terminal Illness: A Qualitative Study. Child Care in Practice 26(3): 257-271. DOI: 10.1080/13575279.2018.1555136. Go to original source...
    2. Amery J, Staníčková Z, Hrdličková L (2023). Opravdu praktický průvodce dětskou paliativní péčí: pro lékaře a zdravotní sestry. 2nd, expended ed. Prague: Cesta domů, 268 + 168 p.
    3. Aoun SM, Gill FJ, Phillips MB, Momber S, Cuddeford L, Deleuil R, et al. (2020). The profile and support needs of parents in paediatric palliative care: comparing cancer and non-cancer groups. Palliat Care Social Pract 14: 2632352420958000. DOI: 10.1177/2632352420958000. Go to original source... Go to PubMed...
    4. Aoun SM, Stegmann R, Deleuil R, Momber S, Cuddeford L, Phillips MB, et al. (2022). "It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care. Children 9(3): 322. DOI:10.3390/children9030322. Go to original source... Go to PubMed...
    5. Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. (2022). International Standards for Pediatric Palliative Care: From IMPaCCT to GO-PPaCS. J Pain Symptom Manage 63(5): e529-e543. DOI: 10.1016/j.jpainsymman.2021.12.031. Go to original source... Go to PubMed...
    6. Benini F, Pappadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. (2023). Mezinárodní standardy pro dětskou paliativní péči: Od projektu IMPaCCT k projektu GO-PPaCS. Paliativní medicína 4(2): 11-14.
    7. Boucher S, Downing J, Shemilt R (2014). The Role of Play in Children's Palliative Care. Children 1(3): 302-317. DOI: 10.3390/children1030302. Go to original source... Go to PubMed...
    8. Boyden JY, Feudtner C, Deatrick JA, Widger K, LaRagione G, Lord B, Ersek M (2021). Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach. BMC Palliat Care 20(1): 17. DOI: 10.1186/s12904-020-00703-0. Go to original source... Go to PubMed...
    9. Boyden JY, Hill DL, Nye RT, Bona K, Johnston EE, Hinds P, et al. (2022). Pediatric Palliative Care Parents' Distress, Financial Difficulty, and Child Symptoms. J Pain Symptom Manage 63(2): 271-282. DOI: 10.1016/j.jpainsymman.2021.08.004. Go to original source... Go to PubMed...
    10. Bužgová R, et al. (2019). Dětská paliativní péče. Prague: Grada, 240 p.
    11. Chin W, Jaaniste T, Trethewie S (2018). The Role of Resilience in the Sibling Experience of Pediatric Palliative Care: What Is the Theory and Evidence? Children 5(7): 97. DOI: 10.3390/children5070097. Go to original source... Go to PubMed...
    12. Cho-Hee K, Min-Sun K, Yi-Ji M, Hee-Young S, Myung-Nam L, Kyung-Ah K (2022). Content Analysis of Multifaceted Needs for Improving the Quality of Pediatric Palliative Care Among Parents of Children With Life-threatening Conditions. J Hosp Palliat Nurs. DOI: 10.1097/NJH.0000000000000908 (Online ahead of print). Go to original source... Go to PubMed...
    13. Chvílová Weberová M, Matějek J, Steinlauf B, et al. (2023). Etika v pediatrii a neonatologii. Prague: Grada, 536 p.
    14. Constantinou G, Cook EJ, Tolliday E, Randhawa G (2023). 'A team around the child' professionals' experiences of unmet needs, access and expectations in children's palliative care services, a phenomenological study in the UK. J Child Health Care 22: 13674935221147716. DOI: 10.1177/13674935221147716. Go to original source... Go to PubMed...
    15. Coombes L, Braybrook D, Roach A, Scott H, Harðardóttir D, Bristowe K, et al. (2022). Achieving child-centred care for children and young people with life-limiting and life-threatening conditions - a qualitative interview study. Eur J Pediatr 181(10): 3739-3752. DOI: 10.1007/s00431-022-04566-w. Go to original source... Go to PubMed...
    16. Djakow J, Exnerová M (2021). Dítě se závažným život limitujícím nebo život ohrožujícím onemocněním - aspekty péče paliativní a intenzivní. Urgentní medicína. České Budějovice: Mediprax CB 2021(1): 37-42.
    17. Donnelly JP, Downing K, Cloen J, Fragen P, Gupton AW, Misasi J, Michelson K (2018). Development and Assessment of a Measure of Parent and Child Needs in Pediatric Palliative Care. J Pain Symptom Manage 55(4): 1077-1084.e2. DOI: 10.1016/j.jpainsymman.2017.12.484. Go to original source... Go to PubMed...
    18. Fraser LK, Bluebond-Langner M, Ling J (2020). Advances and Challenges in European Paediatric Palliative Care. Med Sci 8(2): 20. DOI: 10.3390/medsci8020020. Go to original source... Go to PubMed...
    19. ICPCN - International Children's Palliative Care Network (2008). Charta práv dítěte s život limitujícím nebo ohrožujícím onemocněním a jejich rodin. [online] [cit. 2024-07-16]. Available from: https://perinatalnihospic.cz/2014/08/28/charta-prav-ditete-s-zivot-limitujicim-a-zivot-ohrozujicim-onemocnenim/
    20. Institut Pallium (2022a). Koncepce péče o děti a dospívající se závažnou život limitující a ohrožující diagnózou a jejich rodiny. [online] [cit. 2024-07-16]. Available from: https://pallium.cz/publikace/koncepce-pece/
    21. Institut Pallium (2022b). Pilotní projekt Koordinátora péče pro děti se závažným život limitujícím či ohrožujícím onemocněním a jejich rodiny. [online] [cit. 2024-07-16]. Available from: https://pallium.cz/aktuality/pilotni-projekt-koordinatora-pece-pro-detise-zavaznym-zivot-limitujicim-ci-ohrozujicim-onemocnenim-a-jejich-rodiny/
    22. Mandysová P (2019). Metody překladu a transkulturní validace zahraničních nástrojů. Univerzita Pardubice, 128 p.
    23. Matějek J (2023). Etické poradenství v pediatrii. In: Chvílová Weberová M, Matějek J, Steinlauf B, et al. Etika v pediatrii a neonatologii. Prague: Grada, 536 p.
    24. Medical Tribune (2023). Dětská paliativní péče se bez mezioborové spolupráce neobejde. Prague: Medical Tribune.
    25. Nadace rodiny Vlčkových (2021). Nadace rodiny Vlčkových má za cíl pomoci dostat dětskou paliativní péči mezi světovou špičku [online] [cit. 2024-07-16]. Available from: https://nrv.org/detska-paliativni-pece-cz/nadace-rodiny-vlckovych-ma-za-cil-pomoci-dostat-detskou-paliativni-peci-mezi-svetovou-spicku/
    26. Pelentsov LJ, Fielder AL, Laws TA, Esterman AJ (2016). The supportive care needs of parents with a child with a rare disease: results of an online survey. BMC Fam Pract 17: 88. DOI: 10.1186/s12875-016-0488-x. Go to original source... Go to PubMed...
    27. Poláková K, Tučková A, Loučka M (2017). Potřeby dětí s život limitujícím nebo život ohrožujícím onemocněním a jejich rodin. Prague: Sekce dětské paliativní péče ČSPM ČLS JEP, 77 p.
    28. Shields L (2015). What is "family-centered care"? Eur J Pers Cent Healthc 3(2): 139-144. DOI: 10.5750/ejpch.v3i2.993. Go to original source...
    29. Steinlauf B (2023). Zajištění péče o chronicky nemocné děti ve školách. In: Chvílová Weberová M, Matějek J, Steinlauf B, et al. Etika v pediatrii a neonatologii. Prague: Grada, 536 p.
    30. Tan CE, Lau SCD, Latiff ZA, Lee CC, Teh KH, Sidik SM (2021). Information needs of Malaysian parents of children with cancer: A qualitative study. Asia Pac J Oncol Nurs 9(3): 143-152. DOI: 10.1016/j.apjon.2021.11.001. Go to original source... Go to PubMed...
    31. Thomas R, Phillips M, Hamilton RJ (2018). Pain Management in the Pediatric Palliative Care Population. J Nurs Scholarsh 50(4): 375-382. DOI: 10.1111/jnu.12389. Go to original source... Go to PubMed...
    32. WHO - World Health Organization (2020). Palliative care. [online] [cit. 2024-03-06]. Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care
    33. Wiener L, McConnell DG, Latella L, Ludi E (2013). Cultural and religious considerations in pediatric palliative care. Palliat Support Care 11(1): 47-67. DOI: 10.1017/S1478951511001027. Go to original source... Go to PubMed...
    34. Zimmermann K, Cignacco E, Eskola K, Engberg S, Ramelet AS, Von der Weid N, Bergstraesser E (2015). Development and initial validation of the Parental PELICAN Questionnaire (PaPEQu) - an instrument to assess parental experiences and needs during their child's end-of-life care. J Adv Nurs 71(12): 3006-3017. DOI: 10.1111/jan.12741. Go to original source... Go to PubMed...

    This is an open access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND 4.0), which permits non-comercial use, distribution, and reproduction in any medium, provided the original publication is properly cited. No use, distribution or reproduction is permitted which does not comply with these terms.


    Return to the content