Coping with child’s disease by children and their parents (guardians) – a systematic review of the literature
DOI:
https://doi.org/10.2478/pielxxiw-2022-0011Keywords:
parents, guardian, child, coping strategies, chronic diseaseAbstract
COPING WITH CHILD’S DISEASE BY CHILDREN AND THEIR PARENTS (GUARDIANS) – A SYSTEMATIC REVIEW OF THE LITERATURE
Introduction. Illness is a stressful experience for a sick child and its parents (guardians). Coping and studying specific coping behaviors of parents and children with the disease are an essential part of care.
Aim. Presentation of available research results in English and/or Polish, carried out by researchers in the field of coping strategies of children and their parents (guardians) with the child’s disease.
Material and methods. The systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta Analyzes (PRISMA 2020) statement. Electronic databases searched in May 2021 included PubMed, Scopus and Web of Science. Methodological limitations demonstrated using the Critical Skills Appraisal Program (CASP) check-lists package. In total 42 articles were qualified for the analysis.
Results. The analysis of the publications showed that children and their parents most often cope with the disease through social support, active coping, emotional-focused coping, referring to religion and avoidance.
Conclusions. Conscious use of coping strategies may contribute to better results in the treatment undertaken and allow the child and its parents to feel in control of the stressful situation in which they find themselves. Knowing about parents’ and child’s coping strategies can be helpful in developing childcare plans.
References
1. Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer publishing company; 1984, p.141-178.
2. Almeida AC, Pereira MG. Psychometric properties of the Portuguese version of the coping health inventory for parents (CHIP) of adolescents with chronic illness. J. Pediatr. Nurs. 2016; 31(5): 528-536.
3. Berrocoso S, Amayra I, Lazaro E, et al. Coping with Wolf-Hirschhorn syndrome: quality of life and psychosocial features of family carers. Orphanet. J. Rare Dis. 2020; 15(1): 1-14.
4. Brown A, Crowe L, Boneh A, et al. Parent Coping and the Behavioural and Social Outcomes of Children Diagnosed with Inherited Metabolic Disorders. JIMD Rep. 2017; 31: 29-36.
5. Bose M, Mahadevan M, Schules DR, et al. Emotional experience in parents of children with Zellweger spectrum disorders: A qualitative study. Mol. Genet. Metab. Rep. 2019; 19: 100459.
6. Bikmazer A, Orengul AC, Buyukdeniz A, et al. Coping and psychopathology In children with malignancy and bronchiectasis. Pediatr. Pulmonol. 2020; 55(1): 214- 220.
7. Cheng A, Manfredi R, Badolato G, et al. Adolescent Coping Strategies in the
Emergency Department. Pediatr. Emerg. Care. 2019; 35(8): 548-551.
8. Bell M, Biesecker BB, Bodurtha J, et al. Uncertainty, hope, and coping effi cacy among mothers of children with Duchenne/Becker muscular dystrophy. Clin. Genet. 2019; 95(6): 677-683.
9. Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. J. Clin. Epidemiol. 2021; 134: 178-189.
10. Critical Appraisal Skills Programme (2020). CASP (Randomised Controlled Trial) Checklist. [online] Available at: https://casp-uk.net/. Accessed: 08.08.2021.
11. Mauritz PJ, Bolling M, Duipmans JC, et al. The relationship between quality of life and coping strategies of children with EB and their parents. Orphanet. J. Rare Dis. 2021; 16(1): 53.
12. Hoseinzadeh F, Radfar M, Moghaddamtabrizi F, et al. Eff ect of Resilience-based Group Therapy Intervention on Coping in Mothers of Children with Cancer: A Randomized Clinical Trial. Iran J. Nurs. Midwifery Res. 2019; 24(4): 291-295.
13. Ziołkowska N, Bargiel-Matusiewicz K, Gruszczyńska E. Emotional State of Parents of Children Diagnosed with Cancer: Examining Religious and Meaning-Focused Coping. Religions. 2020; 11(3): 132.
14. Zaidman-Zait A. The contribution of maternal executive functions and active doping to dyadic aff ective dynamics: Children with autism spectrum disorder and their mothers. Autism. 2020; 24(3): 645-657.
15. Wen CC, Chu SY. Parenting stress and depressive symptoms in the family caregivers of children with genetic or rare diseases: The mediation eff ects of coping strategies and self-esteem. Tzu-Chi Medical Journal. 2019; 32(2):181-185.
16. Tesei A, Nobile M, Colombo P, et al. Mental health and coping strategies in familie of children and young adults with muscular dystrophies. J. Neurol. 2020; 267(7): 2054-2069.
17. Padeniya RN, Thushari G, Nissanka DH, et al. Maternal coping strategies in response to child’s oncological diseases in Sri Lanka. Acta Oncol. 2020; 59(7): 866-871.
18. Meleady J, Nearchou F, Bramham J, et al. Family adaptation among parents of children on the autism spectrum without a comorbid intellectual disability: A test of the Double ABCX model. Research in Autism Spectrum Disorders. 2020; 78: 101637.
19. Manokara V, Medvedev ON, Lee BO. Parental Illness Representation of Intellectual Disability and Parental Emotional Distress and Coping. Adv. Neurodev. Disord. 2020; 4(3): 284-294.
20. Lopez J, Velasco C, Noriega C. The role of acceptance in parents whose child suff ers from cancer. Eur. J. Cancer Care. 2021; 30(4): e13406.
21. Ghorbani F, Iranmanesh S, Razban F, et al. Parental coping with childhood cancer and its relationship with self-construal: A survey in southeast Iran. Health Sci. Rep. 2020; 3(3): e185.
22. de Man MACP, Segers EW, Schappin R, et al. Parental experiences of their infant’s hospital admission undergoing cardiac surgery: A systematic review. Acta Paediatr. 2021; 110(6): 1730-1740.
23. Clever K, Schepper F, Maier S, et al. Individual and Dyadic Coping and Fear of Progression in Mothers and Fathers of Children with Hematologic Cancer. Fam. Process. 2020; 59(3): 1225-1242.
24. Calışkan Z, Evgin D, Caner N, et al. Determination of burnout, life satisfaction, and stress coping styles of parents with disabled children. Perspect. Psychiatr. Care. 2021; 57(3): 1505-1514.
25. Shokri M, Tarjoman A, Borji M, et al. Investigating psychological problems In caregiver of pediatrics with cancer: A systematic review. J. Child Adolesc. Psychiatr. Nurs. 2020; 33(4): 229-238.
26. Verberne LM, Kars MC, Schouten-van Meeteren AYN, et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. Eur. J. Pediatr. 2019; 178(7): 1075-1085.
27. Van Schoors M, Loeys T, Goubert L, et al. Couples dealing with pediatric blood cancer: a study on the role of dyadic coping. Front Psychol. 2019; 10: 402.
28. Mazhari F, Rayyani M, Iranmanesh S, et al. Power of Religious Beliefs and Coping with Cancer: Opinions of Iranian Parents. J. Relig. Health. 2021; 60(4): 2878-2891.
29. Manicacci M, Bouteyre E, Despax J, et al. Involvement of Emotional Intelligence In Resilience and Coping in Mothers of Autistic Children. J. Autism. Dev. Disord. 2019; 49(11): 4646-4657.
30. Lyu QY, Zhang MF, Bu XQ, et al. A Qualitative Study Exploring Coping Strategies In Chinese Families During Children’s Hospitalization for Cancer Treatment. J. Pediatr. Nurs. 2019; 48: e27-e34.
31. Lumsden MR, Smith DM, Wittkowski A. Coping in parents of children with congenital heart disease: A systematic review and meta-synthesis. J. Child. Fam. Stud. 2019; 28(7): 1736-1753.
32. Jepsen SL, Haahr A, Eg M, et al. Coping with the unfamiliar: How do children cope with hospitalization in relation to acute and/or critical illness? A qualitative metasynthesis. J. Child. Health Care. 2019; 23(4): 534-550.
33. D’Angelo CM, Mrug S, Grossoehme D, et al. Coping, attributions, and health functioning among adolescents with chronic illness and their parents: Reciprocal relations over time. J. Clin. Psychol. Med. Settings. 2019; 26(4): 495-506.
34. Craig F, Savino R, Scoditti S, et al. Coping, stress and negative psychological outcomes in parents of children admitted to a pediatric neurorehabilitation care unit. Eur. J. Phys. Rehabil. Med. 2019; 55(6): 772-782.
35. Clave S, Tsimaratos M, Boucekine M, et al. Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment. BMC Nephrol. 2019; 20(1):163
36. Chong LT, Chong MC, Tang LY, et al. The relationship between psychological distress and religious practices and coping in Malaysian parents of children with Thalassemia. J. Pediatr. Nurs. 2019; 48: e15-e20.
37. Bikmazer A, Orengul AC, Buyukdeniz A, et al. Coping and psychopathology In children with malignancy and bronchiectasis. Pediatr. Pulmonol. 2020; 55(1): 214- 220.
38. Bell M, Biesecker BB, Bodurtha J, et al. Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy. Clin. Genet. 2019; 95(6): 677-683.
39. Ang KQP, Loh PR. Mental Health and Coping in Parents of Children with Autism Spectrum Disorder (ASD) in Singapore: An Examination of Gender Role in Caring. J. Autism. Dev. Disord. 2019; 49(5): 2129-2145.
40. Abdelaziz RB, Chehida AB, Chakchouk HK, et al. Self-Reported Anxiety, Depression and Coping in Parents of Children with Phenylketonuria. J. Dev. Phys. Disabil. 2019; 31(6): 753-776.
41. Ludwig NN, Sil S, Khowaja MK, et al. Executive functioning mediates the relationship between pain coping and quality of life in youth with sickle cell disease. J Pediatr. Psychol. 2018; 43(10): 1160-1169.
42. Johnson EJ, Onieka Mendoza S. Care-giving coping strategies among mothers with chronically ill children. J. Soc. Serv. Res. 2018; 44(3): 400-413.
43. Chivukula U, Kota S, Nandinee D. Burden Experience of Caregivers of Acute
Lymphoblastic Leukemia: Impact of Coping and Spirituality. Indian. J. Palliat. Care. 2018; 24(2): 189-195.
44. Abdoljabbari M, Sheikhzakaryaee N, Atashzadeh-Shoorideh F. Taking Refuge In Spirituality, a Main Strategy of Parents of Children with Cancer: a Qualitative Study. Asian Pac. J. Cancer Prev. 2018; 19(9): 2575-2580.
45. Waters DM, Olson AM, Foushee N, et al. Perceptions of stress, coping, and intervention preferences among caregivers of disadvantaged children with asthma. J. Child. Fam. Stud. 2017; 26(6): 1622-1634.
46. Schadewald A, Kimball E, Ou L. Coping Strategies, Stress, and Support Needs In Caregivers of Children with Mucopolysaccharidosis. JIMD Rep. 2018; 42: 89-97.
47. Peng J, Yang H, Fu G, et al. A study of the stressors and coping behaviors of parents of Chinese hemophilic children. J. Child. Health Care. 2017; 21(2): 212-221.
48. beGheibizadeh M, Gholami Z, Bassaknejad S, et al. Coping strategies of parents with chronic ill children hospitalized in educational hospitals, Ahvaz-Iran. Int. J. Pediatr. 2017; 5(10), 5813-5825.
49. Willis K, Timmons L, Pruitt M, et al. The relationship between optimism, coping, and depressive symptoms in Hispanic mothers and fathers of children with autism spectrum disorder. J. Autism. Dev. Disord. 2016; 46(7): 2427-2440.
50. Lakkis NA, Khoury JM, Mahmassani DM, et al. Psychological distress and doping strategies in parents of children with cancer in Lebanon. Psychooncology. 2016; 25(4): 428-434.
51. Dellenmark-Blom M, Chaplin JE, Jonsson L, et al. Coping strategies used by children and adolescents born with esophageal atresia–a focus group study obtaining the child and parent perspective. Child. Care. Health Dev. 2016; 42(5): 759-767.
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