Experience of Parents Caring for Their Children with Thalassemia: Challenges and Issues for Integrative Review

Punaglom, Nedruetai; Kongvattananon, Puangpaka; Somprasert, Chomchuen

doi:10.31524/bkkmedj.2019.02.018

Cited by 11 publications

(19 citation statements)

References 8 publications

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“…A range of psychological and social maladjustment have been premeditated among the parents of thalassemic children, that includes; social isolation, stigmatization, anxiety and depression (Mufti et al 2015 ). The accentuate on reducing social and psychological burden requires effective parental knowledge for the management and prevention of thalassemia (Maheen et al 2015 ), strong social support (Messina et al 2008 ), elimination of social stigma (Pouraboli 2019 ) and patriarchy (Raffa 2019 ), along with the awareness of religious believes (Punaglom et al 2019 ).…”

Section: Discussionmentioning

confidence: 99%

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

2020

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The study investigates the socio-religious factors in the propagation of genetically inherited disease of Beta thalassemia. The disorder which reportedly has a significant protraction through repeated cousin marriages results in the social maladjustment of the parents of the sick children due to constant depression, anxiety, and weak social interaction and may lead to social isolation as well. This research aims to find out the significant effect of socio-religious trends on psychosocial burden of beta thalassemia major among cousin and non-cousin couples in the province of Punjab in Pakistan. It takes a sample of 932 parents of sick children, among whom 735 were married with cousins and 197 with non-cousins, for data collection. The findings reveal that inadequate knowledge of the disease, insufficient or misdirected social support, stigmatization, and marriage breakups caused by the disease, superstitions, and misinterpretations of religion and the subsequent practices accordingly as significant predictors of psychosocial burden of beta thalassemia major among non-cousins and cousin couples. Additionally, it also finds patriarchy as only significant predictors of outcome variable among cousin couples.

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Section: Discussionmentioning

confidence: 99%

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

2020

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“…For instance, genetic counseling, setting up a social media group connecting families living with children with thalassemia are a few useful channels that could act as knowledge bridges to help those families access the information at their discretion. 6,27 Importantly, genetic counseling is a significant intervention in helping the family alleviate suffering from stigmatization caused by their communities' misconception about the cause of thalassemia. Furthermore, it is very useful to prevent the reoccurrence of new patients from reproductive compensation behavior in some regions.…”

Section: Discussionmentioning

confidence: 99%

“…16 children living with thalassemia in the family setting can produce a high intensity of stress and severe psychological impacts on family members which can in turn lead to disruptions in family functioning. 1,5,6 From reviews, only two existing studies were found which helped to fully understand family functioning with children affected by thalassemia. 3,7 Most studies were qualitative studies describing the experience of parents who have children with thalassemia.…”

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confidence: 99%

Integrative Review for Factors Related to Family Functioning in the Family Living with the Children with Thalassemia

Punaglom

Mangkarakeree²

2020

bkkmedj

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Integrative Review for Factors Related to Family Functioning in the Family Living with the Children with Thalassemia F amily is a crucial support system for all family members, especially when faced with chronic illnesses including thalassemia. 1 Thalassemia is an inherited disease that requires continuous care. The standard treatments for children living with thalassemia are folic acid supplements, blood transfusion, iron chelation therapy, and splenectomy or stem cell transplantation in selected cases. Children living with thalassemia inevitably encounter the immense impacts of this inherited disease and its treatment, as well as needing to continue receiving care from their parents throughout their life. This situation seems likely to be the challenge event that triggers the adaptation of the entire family to meet the increased demand and the complex need of children living with thalassemia. 2 The goal for caring for children living with thalassemia focuses on the children adapting well to their illness, and to be fulfilled with the feeling of responsiveness from their family to allow them to meet their developmental needs as much as possible. However, this depends upon the limitations of thalassemia. This reflects the necessity of family functioning at a high level as an important mechanism to drive family tasks to reach those goals. Family functioning refers to the capability of the whole family to maintain the function of the entire family, consisting of problem-solving, communication, role, affective involvement, affective responsiveness, and behavior control in order to provide a setting for the social, psychological, and biological development and maintenance of family members. 3 In other words, family functioning shows the adaptive ability of the whole family in terms of how the family manages the care of children living with thalassemia and the extent to which they are able to incorporate thalassemia into their daily lifes. 3,4 By achieving a high level of family functioning, this will result in the family providing the best care for children living with thalassemia resulting in a healthy well-being for children. 5 However, there is widespread recognition that caring for

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“…A researcher stated that parents of children with thalassemia did not want to abort their children. Accepting abortion was highly dependent on race and religious backgrounds (15).…”

Section: Discussionmentioning

confidence: 99%

Explaining Consequences of Parents Having Child with Thalassemia: Qualitative Study

Heidari

Ahmadi

2020

Med Surg Nurs J

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Background: Thalassemia can affect different aspects of life the same as any other chronic disease. Despite therapeutic measures of thalassemia, the patient and families encounter several physical and psychological problems. Having a child with thalassemia can disrupts the family mental balance. Objectives: The purpose of this study is to explain the consequences of parents who have children with thalassemia. Methods: Inductive qualitative approach was applied in 2017 - 2018 in Hajar Hospital. Semi-structured interviews were conducted for data collection. Qualitative conventional content analysis was employed for data analysis. 10 five mothers, one grandmother, and two fathers and nurses participated in this study. Results: The three specified categories were as follows: (1) Non-acceptance of disease: disbelief, not following up treatment, and interest for abortion, (2) parent psychological reactions: unhappiness, anxiety, and mental confusion, (3) Isolation: dissociation and stigma. Conclusions: Parents who had children with thalassemia experienced several psychological problems. The consultative and supportive services of the health system were necessary for these parents. Also, it was urgent that the health authorities establish consulting clinics for chronic diseases to provide them the required consulting services.

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Experience of Parents Caring for Their Children with Thalassemia: Challenges and Issues for Integrative Review

Cited by 11 publications

References 8 publications

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

Socio-religious Prognosticators of Psychosocial Burden of Beta Thalassemia Major

Integrative Review for Factors Related to Family Functioning in the Family Living with the Children with Thalassemia

Explaining Consequences of Parents Having Child with Thalassemia: Qualitative Study

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