Psychosocial aspects of children and families treated with hemodialysis

Medyńska, Anna; Zwołińska, Danuta; Grenda, Ryszard; Miklaszewska, Monika; Szczepańska, Maria; Urzykowska, Agnieszka; Zachwieja, Katarzyna; Kiliś‐Pstrusińska, Katarzyna

doi:10.1111/hdi.12526

Cited by 18 publications

(20 citation statements)

References 30 publications

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“…Two studies [25, 28] assessed QoL in patients undergoing dialysis (haemodialysis /PD) and renal transplantation, whereas another [9] assessed QoL in children undergoing dialysis (haemodialysis /PD) and conservative treatment. One paper measured QoL in a homogeneous population: haemodialysis in children aged 2 to 18 years [27]. The results of this study are along the same lines as ours, but the analysis does not address the same age group, and comparisons with healthy children are not sex- and age-matched.…”

Section: Discussionmentioning

confidence: 91%

“…It can be attributed to a relatively small sample and thus a lack of statistical power. Previous studies have reported that the school functioning among dialysis children was significantly lower than in healthy children [11, 27, 28]. Transportation and many hours in hospitals make it difficult or even impossible to integrate with school peers.…”

Section: Discussionmentioning

confidence: 99%

“…The short stature was associated with a negative impact on QoL [33]. The patient’s appearance of a short stature or bone deformities, which appear mainly during puberty, is a significant element of self-acceptance [27]. Short stature may foreshadow poor long-term social outcomes that have been observed by a number of research groups [33–35].…”

Section: Discussionmentioning

confidence: 99%

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Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment

et al. 2019

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Background To describe the quality of life of adolescents initiating haemodialysis, to determine the factors associated with quality of life, and to assess coping strategies and their impact on quality of life. Methods All adolescents initiating haemodialysis between September 2013 and July 2015 in French paediatric haemodialysis centres were included. Quality of life data were collected using the “Vécu et Santé Perçue de l’Adolescent et l’Enfant” questionnaire, and coping data were collected using the Kidcope questionnaire. Adolescent’s quality of life was compared with age- and sex-matched French control. Results Thirty-two adolescents were included. Their mean age was 13.9 ± 2.0 years. The quality of life score was lowest in leisure activities and highest in relationships with medical staff. Compared with the French control, index, energy-vitality, relationships with friends, leisure activities and physical well-being scores were significantly lower in haemodialysis population. In multivariate analyses, active coping was positively associated with quality of life and especially with energy-vitality, relationships with parents and teachers, and school performance. In contrast, avoidant and negative coping were negatively associated with energy-vitality, psychological well-being and body image for avoidant coping, and body image and relationships with medical staff for negative coping. Conclusions The quality of life of haemodialysis adolescents, and mainly the dimensions of leisure activities, physical well-being, relationships with friends and energy-vitality, were significantly altered compared to that of the French population. The impact of coping strategies on quality of life seems to be important. Given the importance of quality of life and coping strategies in adolescents with chronic disease, health care professionals should integrate these aspects into care management.

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Section: Discussionmentioning

confidence: 91%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment

et al. 2019

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“…Childhood chronic diseases usually affect family functioning. Chronic disease greatly increases children's dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease [1]. Furthermore, family plays an important role in the child's adaptation and coping with his/her chronic disease.…”

Section: Introductionmentioning

confidence: 99%

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Darwish

Hassan

Taha

et al. 2020

J. Egypt. Public. Health. Assoc.

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Background Chronic disease greatly increases children’s dependency on parents/caregivers (usually mothers) as they face new problems associated with caring for a child with chronic disease. Thus, chronic kidney disease (CKD) presents a burden for children and their families that last throughout life in different aspects. This study aimed to assess family impact and economic burden of chronic kidney disease (CKD) in children on their families. Methods A cross-sectional study was carried out on 250 caregivers of children with CKD attending tertiary care hospital/health insurance clinics in Assiut, Egypt using PedsQL™ family impact module (FIM) for assessing family impact and economic burden between January and May 2018. Results Seventy six percent of caregivers shared paying for treatment with health insurance while 14% paid the total expenses out of their pockets. Although the majority (87.2%) of caregivers suffered different degrees of financial hardship, more than 60% of them had no coping strategy. The regression module showed that responding caregiver, degree of financial hardship, treatment modality, and socioeconomic class were significant predictors of total FIM (β = 0.38, P < 0.001; β = 0.28, P < 0.001; β = 0.22, P < 0.001; β = 0.13, P = 0.006 respectively). Conclusion Most caregivers were involved in paying for treatment of their children either totally or sharing with health insurance and suffered different degrees of financial hardship. Mothers, caregivers with great financial hardship, and caregivers of children on dialysis had the lowest scores of PedsQL™ FIM. There is a high need for expansion of health insurance umbrella to reduce financial hardship together with continued multidimensional support to families.

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“…Studies show that the quality of life evaluated in patients with CKD is lower when compared to the general population or to control groups. 17 It is believed, considering the psychosocial aspects that make up the overall QOL of the individual, that the use of targeted psychosocial interventions have been shown to improve quality of life and lead to better treatment adherence.…”

Section: • Feelings Of the Adolescent Associated With The Disease Anmentioning

confidence: 99%

Impacto da doença renal crônica em adolescentes em tratamento hemodialítico

Rêgo

Martins

Salviano

2019

Rev enferm UFPE on line.

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Objetivo: compreender o impacto social da doença renal crônica em adolescentes submetidos à hemodiálise. Método: trata-se de estudo qualitativo, descritivo, com adolescentes dos 12 aos 18 anos, que realizavam hemodiálise na unidade hospitalar de Terapia Renal Substitutiva, por meio de entrevista semiestruturada. Analisaram-se os dados segundo o método de pesquisa de narrativas e figura. Resultados: identificaram-se três categorias temáticas: Modificações causadas pela hemodiálise que interferem na rotina; Sentimentos do adolescente associados à doença e à hemodiálise; Sentimentos da família associados à doença e à hemodiálise na perspectiva do adolescente. Conclusão: concluiu-se que o adolescente passa por modificações importantes em seu cotidiano, tanto pelas restrições necessárias para o controle da doença quanto pelas alterações fisiológicas. Revela-se, além disso, que sentimentos como tristeza e medo também permeiam o atendimento a este paciente. Descritores: Insuficiência Renal Crônica; Diálise Renal; Rede social; Adolescente; Família.Abstract Objective: to understand the social impact of chronic kidney disease in adolescents undergoing hemodialysis. Method: this is a qualitative, descriptive study with adolescents from 12 to 18 years old, who underwent hemodialysis in the hospital unit of Renal Replacement Therapy, through semi-structured interviews. Data was analyzed according to the narrative and figure research method. Results: three thematic categories were identified: Modifications caused by hemodialysis that interfere in the routine; Adolescent feelings associated with the disease and hemodialysis; Family feelings associated with the disease and hemodialysis from the adolescent's perspective. Conclusion: it was concluded that the adolescent undergoes important changes in their daily life, both due to the restrictions necessary to control the disease and physiological changes. Moreover, feelings such as sadness and fear also permeate the care of this patient. Descriptors: Renal Insufficiency, Chronic; Renal Dialysis; Social Networking; Adolescent; Family. Resumen Objetivo: comprender el impacto social de la enfermedad renal crónica en adolescentes sometidos a hemodiálisis. Método: se trata de un estudio cualitativo y descriptivo con adolescentes de 12 a 18 años que se sometieron a hemodiálisis en la unidad hospitalaria de Terapia de Reemplazo Renal, a través de entrevistas semiestructuradas. Los datos se analizaron de acuerdo con el método de investigación de narrativas y figura. Resultados: se identificaron tres categorías temáticas: modificaciones causadas por hemodiálisis que interfieren en la rutina; Sentimientos adolescentes asociados con la enfermedad y la hemodiálisis; Sentimientos de la familia asociados con la enfermedad y la hemodiálisis desde la perspectiva del adolescente. Conclusión: se concluyó que el adolescente sufre cambios importantes en su vida diaria, tanto por las restricciones necesarias para controlar la enfermedad como por cambios fisiológicos. También se revela que sentimientos como la tristeza y el miedo también impregnan el cuidado de este paciente. Descriptores: Insuficiencia Renal Crónica; Diálisis Renal; Red Social; Adolescente; Familia.

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Psychosocial aspects of children and families treated with hemodialysis

Abstract: The assessment of QoL in pediatric patients would allow for the earliest possible identification of their nonsomatic problems and irregularities. This could, consequently, contribute to improving QoL in both children with chronic kidney disease and their families.

Cited by 18 publications

References 30 publications

Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment

Quality of life in adolescents with chronic kidney disease who initiate haemodialysis treatment

Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt

Impacto da doença renal crônica em adolescentes em tratamento hemodialítico

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