Farquhar M (1995) Definitions of quality of life: a taxonomy. J Adv Nurs 22(3):502–508
Article CAS PubMed Google Scholar
Lewandowska A (2021) Influence of a child’s cancer on the functioning of their family. Children (Basel) 8(7):592
Lummer-Aikey S, Goldstein S (2021) sibling adjustment to childhood chronic illness: an integrative review. J Fam Nurs 27(2):136–153
Golics CJ, Basra MK, Finlay AY, Salek S (2013) The impact of disease on family members: a critical aspect of medical care. J R Soc Med 106(10):399–407
Article PubMed PubMed Central Google Scholar
Mensah ABB, Nunoo H, Mensah KB, Okyere J, Dzomeku VM, Apiribu F et al (2023) Impact of childhood and adolescence cancer on family caregivers: a qualitative analysis of strains, resources and coping behaviours. BMC Psychol 11(1):361
Article PubMed PubMed Central Google Scholar
Nabors L, Liddle M, Graves ML, Kamphaus A, Elkins J (2019) A family affair: supporting children with chronic illnesses. Child Care Health Dev 45(2):227–233
Christensen V, Varnum M, Parker K, Chan LHK, Saxton L, Cottrell E (2024) The impact of structural and meso-level factors on caregiver coping abilities when supporting a child with cancer: a qualitative study. Int J Environ Res Public Health 21(7):907
Neris RR, Bolis LO, Leite A, Alvarenga WA, Garcia-Vivar C, Nascimento LC (2023) Functioning of structurally diverse families living with adolescents and children with chronic disease: a metasynthesis. J Nurs Scholarsh 55(2):413–428
Arestedt L, Persson C, Benzein E (2014) Living as a family in the midst of chronic illness. Scand J Caring Sci 28(1):29–37
Martire L (2005) The, “relative” efficacy of involving family in psychosocial interventions for chronic illness: are there added benefits to patients and family members? Fam Syst Health 23:312–328
Weihs K, Fisher L, Baird M (2002) Families, health, and behavior: a section of the commissioned report by the Committee on Health and Behavior: research, practice, and policy division of neuroscience and behavioral health and division of health promotion and disease prevention institute of medicine, National Academy of Sciences. Fam Syst Health 20(1):7–46
Lawoko S, Soares JJ (2003) Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children. Qual Life Res 12(6):655–666
Article CAS PubMed Google Scholar
Spezia Faulkner M, Clark FS (1998) Quality of life for parents of children and adolescents with type 1 diabetes. Diabetes Educ 24(6):721–727
Chow AJ, Saad A, Al-Baldawi Z, Iverson R, Skidmore B, Jordan I et al (2024) Family-centred care interventions for children with chronic conditions: a scoping review. Health Expect 27(1):e13897
Article PubMed PubMed Central Google Scholar
Ostlund U, Persson C (2014) Examining family responses to family systems nursing interventions: an integrative review. J Fam Nurs 20(3):259–286
Seid M, Varni JW, Jacobs JR (2000) Pediatric health-related quality-of-life measurement technology: intersections between science, managed care, and clinical care. J Clin Psychol Med Settings 7(1):17–27
Germain N, Aballea S, Toumi M (2019) Measuring the health-related quality of life in young children: how far have we come? J Mark Access Health Policy 7(1):1618661
Article PubMed PubMed Central Google Scholar
Petersen C, Schmidt S, Power M, Bullinger M, Group D (2005) Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res 14(4):1065–1077
Varni JW, Seid M, Rode CA (1999) The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 37(2):126–139
Article CAS PubMed Google Scholar
Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P (2004) The PedsQL family impact module: preliminary reliability and validity. Health Qual Life Outcomes 2:55
Article PubMed PubMed Central Google Scholar
Tiberg I, Hallström I (2009) Översättning och testning av ett livskvalitetinstrument: the PedsQL™ Family Impact Module. Vard Nord Utveckl Forsk 29(1):38–42
Golics CJ, Basra MKA, Finlay AY, Salek S (2014) The development and validation of the Family Reported Outcome Measure (FROM-16) <sup>©</sup> to assess the impact of disease on the partner or family member. Qual Life Res 23(1):317–326
Rodijk LH, Schins EMW, Witvliet MJ, Alizadeh BZ, Verkade HJ, de Kleine RH et al (2020) Quality of life in parents of children with biliary atresia. J Pediatr Gastroenterol Nutr 71(5):641–646
Article CAS PubMed Google Scholar
Farnik M, Brozek G, Pierzchala W, Zejda JE, Skrzypek M, Walczak L (2010) Development, evaluation and validation of a new instrument for measurement quality of life in the parents of children with chronic disease. Health Qual Life Outcomes 8:151
Article PubMed PubMed Central Google Scholar
Farnik M, Pierzchala W, Brozek G, Zejda JE, Skrzypek M (2010) Quality of life protocol in the early asthma diagnosis in children. Pediatr Pulmonol 45(11):1095–1102
Putterman E, Patel DP, Andrade G, Harfmann KL, Hogeling M, Cheng CE et al (2019) Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: a prospective, cross-sectional study. J Am Acad Dermatol 80(5):1389–1394
Millard SK, Murphy S, Barton G, Leathersich M, Mills G, Rixon L et al (2022) Evaluating Palin Stammering Therapy for School Children (Palin STSC 8–14): protocol for a feasibility randomised controlled trial comparing Palin STSC(8–14) with usual treatment. Pilot Feasibility Stud 8(1):210
Article CAS PubMed PubMed Central Google Scholar
Andrade G, Rangu S, Provini L, Putterman E, Gauthier A, Castelo-Soccio L (2020) Childhood vitiligo impacts emotional health of parents: a prospective, cross-sectional study of quality of life for primary caregivers. J Patient Rep Outcomes 4(1):20
Article PubMed PubMed Central Google Scholar
Selroos O, Kupczyk M, Kuna P, Lacwik P, Bousquet J, Brennan D et al (2015) National and regional asthma programmes in Europe. Eur Respir Rev 24(137):474–483
Article PubMed PubMed Central Google Scholar
Gong B, Yang W, Xing Y, Lai Y, Shan Z (2024) Global, regional, and national burden of type 1 diabetes in adolescents and young adults. Pediatr Res. https://doi.org/10.1038/s41390-024-03107-5
Blomberg K, Carlsson AA, Hagberg L, Jonsson O, Leissner L, Eriksson MH (2017) Quality of life and trust among young people with narcolepsy and their families, after the Pandemrix(R) vaccination: protocol for a case-control study. BMC Pediatr 17(1):183
Article PubMed PubMed Central Google Scholar
Costello AB, Osborne J (2005) Best practices in exploratory factor analysis: four recommendations for getting the most from your analysis. Pract Assess Res Eval 10(7):1–9
Wild D, Grove A, Martin M, Eremenco S, McElroy S, Verjee-Lorenz A et al (2005) Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: report of the ISPOR task force for translation and cultural adaptation. Value Health 8(2):94–104
Collins D (2003) Pretesting survey instruments: an overview of cognitive methods. Qual Life Res 12(3):229–238
Knafl K, Deatrick J, Gallo A, Holcombe G, Bakitas M, Dixon J et al (2007) The analysis and interpretation of cognitive interviews for instrument development. Res Nurs Health 30(2):224–234
Patton MQ (2002) Qualitative research & evaluation methods. Sage Publications, London
Osborne JW, Costello AB, Kellow JT (2008) Best practices in quantitative methods. 2008 2023/02/05. Thousand Oaks, California: SAGE Publications, Inc. Available from: https://methods.sagepub.com/book/best-practices-in-quantitative-methods
Hobart J, Cano S (2009) Improving the evaluation of therapeutic interventions in multiple sclerosis: the role of new psychometric methods. Health Technol Assess 13(12):iii, ix-x, 1–177
Mukuria C, Connell J, Carlton J, Peasgood T, Scope A, Clowes M et al (2022) Qualitative review on domains of quality of life important for patients, social care users, and informal carers to inform the development of the EQ-HWB. Value Health 25(4):492–511
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