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05-09-2021 | Review

Quality of life of parents with children with congenital abnormalities: a systematic review with meta-analysis of assessment methods and levels of quality of life

Auteurs: Marisa Garcia Rodrigues, Matilde Monteiro Soares, José Daniel Rodrigues, Luís Filipe Azevedo, Pedro Pereira Rodrigues, José Carlos Areias, Maria Emília Areias

Gepubliceerd in: Quality of Life Research | Uitgave 4/2022

Abstract

Purpose

To quantify and understand how to assess the quality of life and health-related QoL of parents with children with congenital abnormalities.

Methods

We conducted a systematic review with meta-analysis. The search was carried out in 5 bibliographic databases and in ClinicalTrials.gov. No restriction on language or date of publication was applied. This was complemented by references of the studies found and studies of evidence synthesis, manual search of abstracts of relevant congresses/scientific meetings and contact with experts.

We included primary studies (observational, quasi-experimental and experimental studies) on parents of children with CA reporting the outcome quality of life (primary outcome) of parents, independently of the intervention/exposure studied.

Results

We included 75 studies (35 observational non-comparatives, 31 observational comparatives, 4 quasi-experimental and 5 experimental studies). We identified 27 different QoL instruments. The two most frequently used individual QoL instruments were WHOQOL-Bref and SF-36. Relatively to family QoL tools identified, we emphasized PedsQL FIM, IOFS and FQOL. Non-syndromic congenital heart defects were the CA most frequently studied. Through the analysis of comparative studies, we verified that parental and familial QoL were impaired in this population.

Conclusions

This review highlights the relevance of assessing QoL in parents with children with CA and explores the diverse QoL assessment tools described in the literature. Additionally, results indicate a knowledge gap that can help to draw new paths to future research. It is essential to assess QoL as a routine in healthcare providing and to implement strategies that improve it.

vorige artikel What conservative interventions can improve the long-term quality of life, depression, and anxiety of individuals with stable COPD? A systematic review and meta-analysis

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World Health Organization, Congenital anomalies. (2016). https://www.who.int/news-room/fact-sheets/detail/c. https://doi.org/10.1046/j.1525-1594.2002.06876.x.

Chow, M. Y. K., Morrow, A. M., Robbins, S. C. C., & Leask, J. (2013). Condition-specific quality of life questionnaires for caregivers of children with pediatric conditions: A systematic review. Quality of Life Research, 22, 2183–2200. https://doi.org/10.1007/s11136-012-0343-z CrossRefPubMed

Jackson, A. C., Frydenberg, E., Liang, R. P. T., Higgins, R. O., & Murphy, B. M. (2015). Familial Impact and Coping with Child Heart Disease: A Systematic Review. Pediatric Cardiology, 36, 695–712. https://doi.org/10.1007/s00246-015-1121-9 CrossRefPubMed

Albuquerque, S., Fonseca, A., Pereira, M., Nazaré, B., & Canavarro, M. (2011). Estudos psicométricos da versão Portuguesa da Escala de Impacto Familiar (EIF). Laboratório Psicol, 9, 173–187. https://doi.org/10.14417/lp.632.

Fonseca, A., Nazaré, B., & Canavarro, M. C. (2012). Parental psychological distress and quality of life after a prenatal or postnatal diagnosis of congenital anomaly: A controlled comparison study with parents of healthy infants. Disability and Health Journal, 5, 67–74. https://doi.org/10.1016/j.dhjo.2011.11.001 CrossRefPubMed

Kolaitis, G. A., Meentken, M. G., & Utens, E. M. W. J. (2017). Mental health problems in parents of children with congenital heart disease. Frontiers in Pediatrics, 5, 1–7. https://doi.org/10.3389/fped.2017.00102 CrossRef

Wei, H., Roscigno, C. I., Hanson, C. C., & Swanson, K. M. (2015). Families of children with congenital heart disease: A literature review. Heart Lung Journal of Acute Critical Care, 44, 494–511. https://doi.org/10.1016/j.hrtlng.2015.08.005 CrossRefPubMed

West, C. A., Besier, T., Borth-Bruhns, T., & Goldbeck, L. (2009). Effectiveness of a family-oriented rehabilitation program on the quality of life of parents of chronically ill children. Klinische Padiatrie, 221, 241–246. https://doi.org/10.1055/s-0029-1216364 CrossRefPubMed

Lawoko, S. (2007). Factors influencing satisfaction and well-being among parents of congenital heart disease children: Development of a conceptual model based on the literature review. Scandinavian Journal of Caring Sciences, 21, 106–117. https://doi.org/10.1111/j.1471-6712.2007.00444.x CrossRefPubMed

10.

Gregory, M. R. B., Prouhet, P. M., Russell, C. L., & Pfannenstiel, B. R. (2018). Quality of life for parents of children with congenital heart defect: A systematic review. Journal of Cardiovascular Nursing, 33, 363–371. https://doi.org/10.1097/JCN.0000000000000466 CrossRef

11.

Woolf-King, S. E., Anger, A., Arnold, E. A., Weiss, S. J., & Teitel, D. (2017). Mental health among parents of children with critical congenital heart defects: A systematic review. Journal of the American Heart Association, 6, 1–14. https://doi.org/10.1161/JAHA.116.004862 CrossRef

12.

Dolk, H., Loane, M., & Garne, E. (2011). Congenital heart defects in Europe: Prevalence and perinatal mortality, 2000 to 2005. Circulation, 123, 841–849. https://doi.org/10.1161/CIRCULATIONAHA.110.958405 CrossRefPubMed

13.

van der Linde, D., Konings, E. E. M., Slager, M. A., Witsenburg, M., Helbing, W. A., Takkenberg, J. J. M., & Roos-Hesselink, J. W. (2011). Birth prevalence of congenital heart disease worldwide: A systematic review and meta-analysis. Journal of the American College of Cardiology, 58, 2241–2247. https://doi.org/10.1016/j.jacc.2011.08.025 CrossRefPubMed

14.

Rempel, G. R., & Harrison, M. J. (2007). Safeguarding precarious survival: Parenting children who have life-threatening heart disease. Qualitative Health Research, 17, 824–837. https://doi.org/10.1177/1049732307303164 CrossRefPubMed

15.

W. health Organization. (1946). United States Treaties and International Agreement. https://www.loc.gov/law/help/us-treaties/bevans/m-ust000004-0119.pdf.

16.

Power, M., & Kuyken, W. (1998). World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties. Social Science and Medicine, 46, 1569–1585. https://doi.org/10.1016/S0277-9536(98)00009-4 CrossRef

17.

Centers for Disease Control and Prevention, HRQOL Concepts, HRQOL Concepts. (2018). http://www.cdc.gov/hrqol/concept.htm. http://www.cdc.gov/hrqol/concept.htm. Accessed 21 Oct 2020.

18.

Campbell, J. D., Brooks, M., Hosokawa, P., Robinson, J., Song, L., & Krieger, J. (2015). Community health worker home visits for medicaid-enrolled children with asthma: Effects on asthma outcomes and costs. American Journal of Public Health, 105, 2366–2372. https://doi.org/10.2105/AJPH.2015.302685 CrossRefPubMedPubMedCentral

19.

Anderson, K. L., & Burckhardt, C. S. (1999). Conceptualization and measurement of quality of life as an outcome variable for health care intervention and research. Journal of Advanced Nursing, 29, 298–306. https://doi.org/10.1046/j.1365-2648.1999.00889.x CrossRefPubMed

20.

T.W. Group. (1998). Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological Medical, 28, 551–558.

21.

T.W. Group. (1995). The World Health Organization Quality of Life Assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409. CrossRef

22.

Centers for Disease Control and Prevention. (2016). HRQOL Concepts, Centers Disease of Control Prevention, 4–7. http://www.cdc.gov/hrqol/concept.htm. Accessed 23 Aug 2018.

23.

Centers for Disease Control and Prevention. (2000). Measuring healthy days: Population assessment of health-related quality of life. http://www.cdc.gov/nccdphp/brfss/.

24.

A.C.O.P.A.A.M., Hardin, A. P., Hackell, J. M. (2017). Age limit of paediatrics. Pediatrics, 140, e20172151. https://doi.org/10.1542/peds.2017-2151.

25.

C. on C. and A. Health. (1988). Age limits of paediatrics. Pediatrics, 81, 736. https://doi.org/10.1007/bf02734309.

26.

A.A. of Pediatrics. (2017). Brigth futures: Guidelines for the health supervision of infants, children, and adolescents, 4th ed, American Academy of Pediatrics.

27.

U.S.D. of H. and H.S.F. and D.A.& C. for D. and R. Health. (2003). Guidance for Industry and FDA Staff: Pediatric Expertise for Advisory Panels. Food and Drug Administration. http://www.fda.gov/downloads/MedicalDevices/DeviceRegulationandGuidance/GuidanceDocuments/ucm082188.pdf.

28.

Albuquerque, S., Pereira, M., Fonseca, A., & Canavarro, M. C. (2013). Qualidade de vida e sintomatologia psicopatológica em pais de crianças com diagnóstico de deficiência/anomalia congénita: A importância das características de resiliência. Analise Psicologica, 31, 171–184. https://doi.org/10.14417/ap.589.

29.

Goldbeck, L., & Melches, J. (2005). Quality of life in families of children with congenital heart disease. Quality of Life Research, 14, 1915–1924. CrossRef

30.

Goldbeck, L., Hölling, I., Schlack, R., West, C., & Besier, T. (2011). The impact of an inpatient family-oriented rehabilitation program on parent-reported psychological symptoms of chronically ill children. Klinische Padiatrie, 223, 79–84. https://doi.org/10.1055/s-0030-1262831 CrossRefPubMed

31.

van der Mheen, M., van Beynum, I. M., Dulfer, K., van der Ende, J., van Galen, E, Duvekot, J., Rots, L. E., van den Adel, T. P. L., Bogers, A. J. J. C., McCusker, C. G., Casey, F. A., Helbing, W. A., & Utens, E. M. W. J. (2018). The CHIP-Family study to improve the psychosocial wellbeing of young children with congenital heart disease and their families: design of a randomized controlled trial. BMC Pediatrics, 18

32.

Fonseca, A., Nazaré, B., & Canavarro, M. C. (2014). Parenting an infant with a congenital anomaly: An exploratory study on patterns of adjustment from diagnosis to six months post birth. Journal of Child Health Care, 18, 111–122. https://doi.org/10.1177/1367493512473856 CrossRefPubMed

33.

Fonseca, A., Nazaré, B., & Canavarro, M. C. (2016). Medical information concerning an infant’s congenital anomaly: Successful communication to support parental adjustment and transition. Disability and Health Journal, 9, 150–156. https://doi.org/10.1016/j.dhjo.2015.08.005 CrossRefPubMed

34.

Marchal, J. P., Maurice-Stam, H., Hatzmann, J., van Trotsenburg, A. S. P., & Grootenhuis, M. A. (2013). Health related quality of life in parents of six to eight year old children with Down syndrome. Research in Developmental Disabilities, 34, 4239–4247. https://doi.org/10.1016/j.ridd.2013.09.011 CrossRefPubMed

35.

Marchal, J. P., Maurice-Stam, H., van Trotsenburg, A. S. P., & Grootenhuis, M. A. (2016). Mothers and fathers of young Dutch adolescents with Down syndrome: Health related quality of life and family functioning. Research in Developmental Disabilities, 59, 359–369. https://doi.org/10.1016/j.ridd.2016.09.014 CrossRefPubMed

36.

Wolfe-Christensen, C., Wisniewski, A. B., Mullins, A. J., Reyes, K. J., Austin, P., Baskin, L., Bernabé, K., Cheng, E., Fried, A., Frimberger, D., Galan, D., Gonzalez, L., Greenfield, S., Kolon, T., Kropp, B., Lakshmanan, Y., Meyer, S., Meyer, T., Nokoff, N. J., … Mullins, L. L. (2017). Changes in levels of parental distress after their child with atypical genitalia undergoes genitoplasty. Journal of Pediatric Urology, 13(32), e1-32.e6. https://doi.org/10.1016/j.jpurol.2016.10.024 CrossRef

37.

Ellens, R. E. H., Bakula, D. M., Mullins, A. J., Scott Reyes, K. J., Austin, P., Baskin, L., Bernabé, K., Cheng, E. Y., Fried, A., Frimberger, D., Galan, D., Gonzalez, L., Greenfield, S., Kolon, T., Kropp, B., Lakshmanan, Y., Meyer, S., Meyer, T., Mullins, L. L., Nokoff, N. J., Palmer, B., Poppas, D., Paradis, A., Yerkes, E., Wisniewski, A. B., & Wolfe-Christensen, C. (2017). Psychological adjustment of parents of children born with atypical genitalia 1 year after genitoplasty. Journal of Urology, 198, 914–920. https://doi.org/10.1016/j.juro.2017.05.035.

38.

Witvliet, M., Sleeboom, C., de Jong, J., van Dijk, A., Zwaveling, S., & van der Steeg, A. (2014). Anxiety and Quality of Life of Parents with Children Diagnosed with an Anorectal Malformation or Hirschsprung Disease. European Journal of Pediatric Surgery, 24, 70–74. CrossRef

39.

Nanigian, D. K., Nguyen, T., Tanaka, S. T., Cambio, A., DiGrande, A., & Kurzrock, E. A. (2008). Development and validation of the fecal incontinence and constipation quality of life measure in children with spina bifida. Journal of Urology, 180, 1770–1773. https://doi.org/10.1016/j.juro.2008.03.103 CrossRef

40.

Albuquerque, S., Pereira, M., Fonseca, A., & Canavarro, M. C. (2012). Impacto familiar e ajustamento de pais de crianças com diagnóstico de anomalia congênita: Influência dos determinantes da criança. Rev. Psiquiatr. Clin., 39, 136–141. https://doi.org/10.1590/S0101-60832012000400004 CrossRef

41.

Alpern, A. N., Gardner, M., Kogan, B., Sandberg, D. E., & Quittner, A. L. (2017). Development of health-related quality of life instruments for young children with Disorders of Sex Development (DSD) and their parents. Journal of Pediatric Psychology, 42, 544–558. https://doi.org/10.1093/jpepsy/jsw022 CrossRefPubMed

42.

Geok, C. K., Abdullah, K. L., & Kee, L. H. (2013). Quality of life among Malaysian mothers with a child with Down syndrome. International Journal of Nursing Practice, 19, 381–389. https://doi.org/10.1111/ijn.12083 CrossRefPubMed

43.

Goldbeck, L., & Melches, J. (2006). The impact of the severity of disease and social disadvantage on quality of life in families with congenital cardiac disease. Cardiology in the Young, 16, 67–75. https://doi.org/10.1017/S1047951105002118 CrossRefPubMed

44.

Gregory, M. (2019). A descriptive, cross-sectional, correlational exploration of perceived stress, quality of life, and family functioning in parents of a child with congenital heart disease: the pinched study, Faculty of the University of Missouri-Kansas City.

45.

Ihara, H., Ogata, H., Sayama, M., Kato, A., Gito, M., Murakami, N., Kido, Y., & Nagai, T. (2014). QOL in caregivers of Japanese patients with Prader-Willi syndrome with reference to age and genotype. American Journal of Medical Genetics, 164, 2226–2231. https://doi.org/10.1002/ajmg.a.36634 CrossRef

46.

Kapoor, S., Bhayana, S., Singh, A., & Kishore, J. (2014). Co-morbidities leading to mortality or hospitalization in children with down syndrome and its effect on the quality of life of their parents. Indian Journal of Pediatrics, 81, 1302–1306. https://doi.org/10.1007/s12098-014-1389-4 CrossRefPubMed

47.

Kramer, F. J., Baethge, C., Sinikovic, B., & Schliephake, H. (2007). An analysis of quality of life in 130 families having small children with cleft lip/palate using the impact on family scale. International Journal of Oral and Maxillofacial Surgery, 36, 1146–1152. https://doi.org/10.1016/j.ijom.2007.06.009 CrossRefPubMed

48.

Kumari, V., Joshi, P., Dhua, A. K., Sapra, S., Srinivas, M., Agarwala, S., & Bhatnagar, V. (2019). Developmental status of children operated for esophageal atresia with or without tracheoesophageal fistula along with maternal stress, their quality of life, and coping abilities at AIIMS, New Delhi. European Journal of Pediatric Surgery, 29, 125–131. https://doi.org/10.1055/s-0038-1676825 CrossRefPubMed

49.

Levert, E. M., Helbing, W. A., Dulfer, K., Van Domburg, R. T., & Utens, E. M. W. J. (2017). Psychosocial needs of children undergoing an invasive procedure for a CHD and their parents. Cardiology in the Young, 27, 243–254. https://doi.org/10.1017/S1047951116000391 CrossRefPubMed

50.

Mao, S. J., Shen, J., Xu, F., & Zou, C. C. (2019). Quality of life in caregivers of young children with Prader-Willi syndrome. World J. Pediatr., 15, 506–510. https://doi.org/10.1007/s12519-019-00311-w CrossRefPubMed

51.

Mazer, P., Gischler, S. J., Koot, H. M., Tibboel, D., van Dijk, M., & Duivenvoorden, H. J. (2008). Impact of a child with congenital anomalies on parents (ICCAP) questionnaire; a psychometric analysis. Health and Quality of Life Outcomes, 6, 1–10. https://doi.org/10.1186/1477-7525-6-102 CrossRef

52.

Awoyale, T., Onajole, A. T., Ogunnowo, B. E., Adeyemo, W. L., Wanyonyi, K. L., & Butali, A. (2016). Quality of life of family caregivers of children with orofacial clefts in Nigeria: A mixed-method study. Oral Diseases, 22, 116–122. https://doi.org/10.1111/odi.12379 CrossRefPubMed

53.

Molinas, C., Cazals, L., Diene, G., Glattard, M., Arnaud, C., Tauber, M., Lorenzini, F., Jésuran-Pérelroizen, F., Nègre-Pagès, L., Thuilleaux, D., Jauregui, J., Demeer, G., Copet, P., Barat, P., Boulard, S., Colle, M., Puel, O., Lacombe, D., Dalla Vale, F., Jeandel, C., Garnier, P., Grandjean, H., Lienhardt, A., Mas, J. C., Wagner, K., Simonin, G., Moncla, A., Voelckel, M. A., & Nicolino, M. (2008). French database of children and adolescents with Prader-Willi syndrome. BMC Medical Genetics. https://doi.org/10.1186/1471-2350-9-89.

54.

Oliveira, E. D. F., & Limongi, S. C. O. (2011). Quality of life of parents/caregivers of children and adolescents with Down syndrome. Revista da Sociedade Brasileira de Fonoaudiologia, 23, 321–327. https://doi.org/10.1590/S2179-64912011000400006.

55.

Ortiz-Quiroga, D. M., Ariza, Y., Pachajoa, H. (2018). Calidad de vida de familias de niños y adolescentes con discapacidad asociada a defectos congénitos. University of Psychology, 17, 1–10. https://doi.org/10.11144/Javeriana.upsy17-1.cvfn.

56.

Patjanasoontorn, N., Pradubwong, S., Mongkoltawornchai, S., Phetcharat, T., & Chowchuen, B. (2010). Development and reliability of the THAICLEFT quality of life questionnaire for children with Cleft Lip/Palate and families. J. Med. Assoc. Thail., 93, S16-18.

57.

Payakachat, N., Tilford, J. M., Brouwer, W. B. F., Van Exel, N. J., & Grosse, S. D. (2011). Measuring health and well-being effects in family caregivers of children with craniofacial malformations. Quality of Life Research, 20, 1487–1495. https://doi.org/10.1007/s11136-011-9870-2 CrossRefPubMed

58.

Sadhwani, A., Willen, J. M., LaVallee, N., Stepanians, M., Miller, H., Peters, S. U., Barbieri-Welge, R. L., Horowitz, L. T., Noll, L. M., Hundley, R. J., Bird, L. M., & Tan, W. H. (2019). Maladaptive behaviors in individuals with Angelman syndrome. American Journal of Medical Genetics, 179, 983–992. https://doi.org/10.1002/ajmg.a.61140 CrossRefPubMed

59.

Sampogna, F., Tabolli, S., Di Pietro, C., Castiglia, D., Zambruno, G., & Abeni, D. (2013). The evaluation of family impact of recessive dystrophic epidermolysis bullosa using the Italian version of the Family Dermatology Life Quality Index. J. Eur. Acad. Dermatology Venereol., 27, 1151–1155. https://doi.org/10.1111/j.1468-3083.2012.04682.x CrossRef

60.

Sawin, K. J., Brei, T. J., Buran, C. F., & Fastenau, P. S. (2002). Factors associated with quality of life in adolescents with Spina Bifida. Journal of Holistic Nursing, 20, 279–304. https://doi.org/10.1177/089801010202000307 CrossRefPubMed

61.

Steel, R., Poppe, L., Vandevelde, S., Van Hove, G., & Claes, C. (2011). Family quality of life in 25 Belgian families: Quantitative and qualitative exploration of social and professional support domains. Journal of Intellectual Disability Research, 55, 1123–1135. https://doi.org/10.1111/j.1365-2788.2011.01433.x CrossRefPubMed

62.

Stoffel, G., Spirig, R., Stiasny, B., Bernet, V., Dave, H., & Knirsch, W. (2017). Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period – a prospective mixed-method study. Journal of Clinical Nursing, 26, 3363–3370. https://doi.org/10.1111/jocn.13694 CrossRefPubMed

63.

Azhar, A. S., Al Shammasi, Z. H., & Higgi, R. E. (2016). The impact of congenital heart diseases on the quality of life of patients and their families in Saudi Arabia: Biological, psychological, and social dimensions. Saudi Medical Journal, 37, 392–402. https://doi.org/10.15537/smj.2016.4.13626.

64.

Tosello, B., Zahed, M., Guimond, F., Baumstarck, K., Faure, A., Michel, F., Claris, O., Massardier, J., Gire, C., & Merrot, T. (2017). Neurodevelopment and health-related quality of life in infants born with gastroschisis: A 6-year retrospective French Study. European Journal of Pediatric Surgery, 27, 352–360. https://doi.org/10.1055/s-0036-1597268 CrossRefPubMed

65.

Valença, M. P., De Menezes, T. A., Calado, A. A., De Aguiar Cavalcanti, G. (2012). Burden and quality of life among caregivers of children and adolescents with meningomyelocele: Measuring the relationship to anxiety and depression. Spinal Cord, 50, 553–557. https://doi.org/10.1038/sc.2012.10.

66.

van’t Veer, T., Meester, H., Poenaru, D., Kogei, A., Augenstein, K., & Bransford, R. (2008). Quality of life for families with spina bifida in Kenya. Tropical Doctor, 38, 160–162. https://doi.org/10.1258/td.2007.070053.

67.

Warnakulasooriya, P. H., & Kasturiaratchi, K. (2020). Quality of life of caregivers with children having congenital heart disease awaiting cardiac surgery at the Lady Ridgeway Hospital for Children, Colombo, Sri Lanka. Sri Lanka J. Child Heal., 49, 17–22. https://doi.org/10.4038/sljch.v49i1.8892 CrossRef

68.

da Silva, G. V., de Moraes, D. E. B., Konstantyner, T., & Leite, H. P. (2020). Social support and quality of life of families with children with congenital heart disease. Cienc. e Saude Coletiva., 25, 3153–3162. https://doi.org/10.1590/1413-81232020258.18402018 CrossRef

69.

Bektas, İ, Kır, M., Yıldız, K., Genç, Z., Bektas, M., & Ünal, N. (2020). Symptom frequency in children with congenital heart disease and parental care burden in predicting the quality of life of parents in Turkey. Journal of Pediatric Nursing, 53, e211–e216. https://doi.org/10.1016/j.pedn.2020.04.012 CrossRefPubMed

70.

Beluci, M. L., da Silva Demoro Mondini, C. C., dos Santos Trettene, A., & Spadoti Dantas, R. A. (2019) Correlation between quality of life and burden of family caregivers of infants with cleft lip and palate. Revista da Escola de Enfermagem da USP, 53, 1–6. https://doi.org/10.1590/S1980-220X2017047603432.

71.

Bevilacqua, F., Palatta, S., Mirante, N., Cuttini, M., Seganti, G., Dotta, A., & Piersigilli, F. (2013). Birth of a child with congenital heart disease: Emotional reactions of mothers and fathers according to time of diagnosis. J. Matern. Neonatal Med., 26, 1249–1253. https://doi.org/10.3109/14767058.2013.776536 CrossRef

72.

Carter, R. D., Raia, M., Ewing-Cobbs, L., Gambello, M., Hashmi, S. S., Peterson, S. K., Robbins-Furman, P., & Potocki, L. (2013). Stress and well-being among parents of children with potocki-lupski syndrome. Journal of Genetic Counseling, 22, 633–642. https://doi.org/10.1007/s10897-013-9602-6 CrossRefPubMed

73.

Close, S., Sadler, L., & Grey, M. (2016). In the Dark: challenges of caring for Sons with Klinefelter syndrome. Journal of Pediatric Nursing, 31, 11–20. https://doi.org/10.1016/j.pedn.2015.05.002 CrossRefPubMed

74.

De Cuyper, E., Dochy, F., De Leenheer, E., & Van Hoecke, H. (2019). The impact of cleft lip and/or palate on parental quality of life: A pilot study. International Journal of Pediatric Otorhinolaryngology, 126, 109598. https://doi.org/10.1016/j.ijporl.2019.109598 CrossRefPubMed

75.

Alkan, F., Sertcelik, T., Yalln Sapmaz, S., Eser, E., & Coskun, S. (2017). Responses of mothers of children with CHD: Quality of life, anxiety and depression, parental attitudes, family functionality. Cardiology in the Young, 27, 1748–1754. https://doi.org/10.1017/S1047951117001184.

76.

Senses Dinc, G., Cop, E., Tos, T., Sari, E., & Senel, S. (2019). Mothers of 0–3-year-old children with Down syndrome: Effects on quality of life. Pediatrics International, 61, 865–871. https://doi.org/10.1111/ped.13936.

77.

Eagleson, K. J., Justo, R. N., Ware, R. S., Johnson, S. G., & Boyle, F. M. (2013). Health-related quality of life and congenital heart disease in Australia. Journal of Paediatrics and Child Health, 49, 856–864. https://doi.org/10.1111/jpc.12296 CrossRefPubMed

78.

Hatzmann, J., Heymans, H. S. A., Ferrer-i-Carbonell, A., Van Praag, B. M. S., & Grootenhuis, M. A. (2008). Hidden consequences of success in pediatrics: Parental health-related quality of life-results from the care project. Pediatrics, 122, e1030–e1038. https://doi.org/10.1542/peds.2008-0582 CrossRefPubMed

79.

Kaugars, A., Shields, C., & Brosig, C. (2018). Stress and quality of life among parents of children with congenital heart disease referred for psychological services. Congenital Heart Disease, 13, 72–78. https://doi.org/10.1111/chd.12547 CrossRefPubMed

80.

Khoshhal, S., Al-Harbi, K., Al-Mozainy, I., Al-Ghamdi, S., Aselan, A., Allugmani, M., Salem, S., El-Agamy, D., & Abo-Haded, H. (2019). Assessment of quality of life among parents of children with congenital heart disease using WHOQOL-BREF: A cross-sectional study from Northwest Saudi Arabia. Health and Quality of Life Outcomes, 17, 1–8. https://doi.org/10.1186/s12955-019-1249-z CrossRef

81.

Kubota, A., Yamakawa, S., Yamamoto, E., Kosugi, M., Hirano, S., Shiraishi, J., Kitajima, H., Yoneda, A., Taduke, Y., Mitani, Y., Watanabe, T., Takifuji, K., & Yamaue, H. (2016). Major neonatal surgery: Psychosocial consequence of the patient and mothers. Journal of Pediatric Surgery, 51, 364–367. https://doi.org/10.1016/j.jpedsurg.2015.09.017 CrossRefPubMed

82.

Kun, Z., Xiong, Y., Yan-Hua, X., Zhongwei, Z., Jian, M., Jinfang, Z., Yirui, W., & Yongqing, H. (2013). Study on life quality and influence factors in cleft lip and palate parents. West China J. Stomatol., 31, 279–282.

83.

Landolt, M. A., Buechel, E. V., & Latal, B. (2011). Predictors of parental quality of life after child open heart surgery: A 6-month prospective study. Journal of Pediatrics, 158, 37–43. https://doi.org/10.1016/j.jpeds.2010.06.037 CrossRef

84.

Lawoko, S., & Soares, J. (2003). Quality of life among parents of children with congenital heart disease, parents of children with other diseases and parents of healthy children Author(s ): S. Lawoko and J. J. F. Soares. Source : Quality of Life Research, 12(6), 655–666.

85.

Michel, F., Baumstarck, K., Gosselin, A., Le Coz, P., Merrot, T., Hassid, S., Chaumoître, K., Berbis, J., Martin, C., & Auquier, P. (2013). Health-related quality of life and its determinants in children with a congenital diaphragmatic hernia. Orphanet Journal of Rare Diseases, 8. https://doi.org/10.1186/1750-1172-8-89.

86.

Allam, L. E., Nabih, M. A. E., & El-Missiry, M. A. (2018). The psychological impact of permanent cardiac pacemakers on pediatric patients and their parents: A case control study. Indian Heart Journal, 70, 872–878. https://doi.org/10.1016/j.ihj.2018.02.007 CrossRefPubMedPubMedCentral

87.

Poley, M. J., Brouwer, W. B. F., Van Exel, N. J. A., & Tibboel, D. (2012). Assessing health-related quality-of-life changes in informal caregivers: An evaluation in parents of children with major congenital anomalies. Quality of Life Research, 21, 849–861. https://doi.org/10.1007/s11136-011-9991-7 CrossRefPubMed

88.

Ridosh, M. M., Sawin, K. J., Schiffman, R. F., & Klein-Tasman, B. P. (2016). Factors associated with parent depressive symptoms and family quality of life in parents of adolescents and young adults with and without Spina Bifida. Journal of Pediatric Rehabilitation Medicine, 9, 287–302. https://doi.org/10.3233/PRM-160399 CrossRefPubMed

89.

Sileshi, L., & Tefera, E. (2017). Health-related quality of life of mothers of children with congenital heart disease in a sub-Saharan setting: Cross-sectional comparative study. BMC Research Notes. https://doi.org/10.1186/s13104-017-2856-6.

90.

Suorsa, K. I., Mullins, A. J., Tackett, A. P., Scott Reyes, K. J., Austin, P., Baskin, L., Bernabé, K., Cheng, E., Fried, A., Frimberger, D., Galan, D., Gonzalez, L., Greenfield, S., Kropp, B., Meyer, S., Meyer, T., Nokoff, N., Palmer, B., Poppas, D., Paradis, A., Yerkes, E., Wisniewski, A. B., & Mullins, L. L. (2015). Characterizing early psychosocial functioning of parents of children with moderate to severe genital ambiguity due to disorders of sex development. Journal of Urology, 194, 1737–1742. https://doi.org/10.1016/j.juro.2015.06.104.

91.

Tekinarslan, I. L. C. (2013). A comparison study of depression and quality of life in Turkish mothers of children with Down syndrome, cerebral palsy, and Autism Spectrum Disorder. Psychological Reports, 112, 266–287. https://doi.org/10.2466/21.02.15.PR0.112.1.266-287.

92.

Tilford, J. M., Grosse, S. D., Robbins, J. M., Pyne, J. M., Cleves, M. A., & Hobbs, C. A. (2005). Health state preference scores of children with spina bifida and their caregivers. Quality of Life Research, 14, 1087–1098. CrossRef

93.

Weigl, V., Rudolph, M., Eysholdt, U., & Rosanowski, F. (2005). Anxiety, depression, and quality of life in mothers of children with cleft lip/palate. Folia Phoniatrica et Logopedica, 57, 20–27. https://doi.org/10.1159/000081958 CrossRef

94.

Werner, H., Balmer, C., & Lehmann, P. (2019). Posttraumatic stress and health-related quality of life in parents of children with cardiac rhythm devices. Quality of Life Research, 28, 2471–2480. https://doi.org/10.1007/s11136-019-02202-z CrossRefPubMed

95.

Witt, S., Dellenmark-Blom, M., Dingemann, J., Dingemann, C., Ure, B. M., Gomez, B., Bullinger, M., & Quitmann, J. (2018). Quality of life in parents of children born with esophageal atresia. European Journal of Pediatric Surgery, 29, 371–377. https://doi.org/10.1055/s-0038-1660867 CrossRefPubMed

96.

Witvliet, M. J., Bakx, R., Zwaveling, S., Van Dijk, T. H., & Van Der Steeg, A. F. W. (2016). Quality of life and anxiety in parents of children with an anorectal malformation or hirschsprung disease: The first year after diagnosis. European Journal of Pediatric Surgery, 26, 2–6. https://doi.org/10.1055/s-0035-1559885 CrossRefPubMed

97.

Arafa, M. A., Zaher, S. R., El-Dowaty, A. A., & Moneeb, D. E. (2008). Quality of life among parents of children with heart disease. Health and Quality of Life Outcomes. https://doi.org/10.1186/1477-7525-6-91.

98.

Yanyan, Z., Caixia, G., Hong, W., Ying, C., Xiaolin, Z., Yuye, L., Pin, H., Bing, S., Lip, C., & Surgery, P. (2015). Analysis of quality of life of 115 parents with cleft lip and/or palate children. 33, 169–173.

99.

Aslan, B. I., Gulsen, A., Tirank, S. B., Findikcioglu, K., Uzuner, F. D., Tutar, H., & Ucuncu, N. (2018). Family functions and life quality of parents of children with cleft lip and palate. The Journal of Craniofacial Surgery, 29, 1614–1618. https://doi.org/10.1097/SCS.0000000000004611 CrossRefPubMed

100.

Bannink, N., Maliepaard, M., Raat, H., Joosten, K. F. M., & Mathijssen, I. M. J. (2010). Health-related quality of life in children and adolescents with syndromic craniosynostosis. J. Plast. Reconstr. Aesthetic Surg., 63, 1972–1981. https://doi.org/10.1016/j.bjps.2010.01.036 CrossRef

101.

Carrada, C. F., Scalioni, F. A. R., Abreu, L. G., Ribeiro, R. A., & Paiva, S. M. (2020). Impact of oral conditions of children/adolescents with Down syndrome on their families’ quality of life. Spec. Care Dent., 40, 175–183. https://doi.org/10.1111/scd.12444 CrossRef

102.

Choi, E. K., Lee, Y. J., Lee, H., & Jung, E. (2019). Bladder and bowel dysfunction in korean children with down syndrome and parental quality of life. Journal of Pediatric Nursing, 49, e74–e80. https://doi.org/10.1016/j.pedn.2019.09.016 CrossRefPubMed

103.

Civilibal, M., Suman, M., Elevli, M., & Duru, N. S. (2014). The quality of life of mothers of children with spina bifida. J. Pediatr. Orthop. Part B., 23, 319–321. https://doi.org/10.1097/BPB.0000000000000063 CrossRef

104.

Denniss, D. L., Sholler, G. F., Costa, D. S. J., Winlaw, D. S., & Kasparian, N. A. (2019). Need for routine screening of health-related quality of life in families of young children with complex congenital heart disease. Journal of Pediatrics, 205, 21-28.e2. https://doi.org/10.1016/j.jpeds.2018.09.037 CrossRef

105.

Emeka, C. I., Adeyemo, W. L., Ladeinde, A. L., & Butali, A. (2017). A comparative study of quality of life of families with children born with cleft lip and/or palate before and after surgical treatment. Journal of the Korean Association of Oral and Maxillofacial Surgeons, 43, 247–255. https://doi.org/10.5125/jkaoms.2017.43.4.247 CrossRefPubMedPubMedCentral

106.

Macho, P., Bohac, M., Fedeles, J. J., Fekiacova, D., & Fedeles Sr, J. (2017). Impact of cleft lip and/or palate in children on family quality of life before and after reconstructive surgery. Bratisl Med J., 118, 370–373. CrossRef

107.

Ok, J. H., & Kurzrock, E. A. (2011). Objective measurement of quality of life changes after ACE Malone using the FICQOL survey. Journal of Pediatric Urology, 7, 389–393. https://doi.org/10.1016/j.jpurol.2011.02.012 CrossRefPubMed

108.

Du, Q., Salem, Y., L, H. H Liu, Zhou, X., Chen, S., Chen, N., Yang, X., Liang, J., & Sun, K. (2017). A home-based exercise program for children with congenital heart disease following interventional cardiac catheterization: Study protocol for a randomized controlled trial. Trials. https://doi.org/10.1186/s13063-016-1773-7.

109.

Edraki, M., Kamali, M., Beheshtipour, N., Amoozgar, H., Zare, N., & Montaseri, S. (2014). The effect of educational program on the quality of life and self-efficacy of the mothers of the infants with congenital heart disease: A randomized controlled trial. IJCBNM., 2, 51–59. PubMedPubMedCentral

110.

Hancock, H. S., Pituch, K., Uzark, K., Bhat, P., Fifer, C., Silveira, M., Yu, S., Welch, S., Donohue, J., Lowery, R., & Aiyagari, R. (2018). A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease. Cardiology in the Young, 28, 561–570. https://doi.org/10.1017/S1047951117002761 CrossRefPubMed

111.

van der Mheen, M., Meentken, M. G., Van Beynum, I. M., Van Der Ende, J., Van Galen, E., Zirar, A., Aendekerk, E. W. C., Van Den Adel, T. P. L., Bogers, A. J. J. C., McCusker, C. G., Hillegers, M. H. J., Helbing, W. A., & Utens, E. M. W. J. (2019). CHIP-Family intervention to improve the psychosocial well-being of young children with congenital heart disease and their families: Results of a randomised controlled trial. Cardiology in the Young, 29, 1172–1182. https://doi.org/10.1017/S1047951119001732 CrossRefPubMed

112.

Zou, K., Fan, Y., Jiang, L., Huang, J., Miao, Y., Yang, C., Yang, M., & Zhao, L. (2020). Ear mold for congenital ear malformation: A randomized controlled trial. Medicine (Baltimore), 99, e21313. https://doi.org/10.1097/MD.0000000000021313 CrossRef

Titel: Quality of life of parents with children with congenital abnormalities: a systematic review with meta-analysis of assessment methods and levels of quality of life
Auteurs: Marisa Garcia Rodrigues
Matilde Monteiro Soares
José Daniel Rodrigues
Luís Filipe Azevedo
Pedro Pereira Rodrigues
José Carlos Areias
Maria Emília Areias
Publicatiedatum: 05-09-2021
Uitgeverij: Springer International Publishing
Gepubliceerd in: Quality of Life Research / Uitgave 4/2022
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-021-02986-z

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