Thalassemia and the adolescent: An investigation of chronic illness, individuals, and systems.

Georganda, Eugenia T.

doi:10.1037/h0089740

Cited by 13 publications

(10 citation statements)

References 11 publications

(13 reference statements)

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“…Conversely, adolescents lacking acceptance voice concerns about feeling different or isolated due to parent maladjustment or negative peer judgment toward their diagnosis . Adolescents who are able to normalize and disclose their condition while retaining connectedness with peers and family are shown to be successful in achieving acceptance . Several studies also highlighted the importance of normalizing the physical changes resulting from an illness, which can often affect an adolescent's self‐perception .…”

Section: Resultsmentioning

confidence: 99%

“…39 Adolescents who are able to normalize and disclose their condition while retaining connectedness with peers and family are shown to be successful in achieving acceptance. 40 Several studies also highlighted the importance of normalizing the physical changes resulting from an illness, which can often affect an adolescent's self-perception. 25,41,42 For example, adolescents voice the challenge of accepting themselves on days where their physical appearance looks more sickly than usual.…”

Section: Normalizationmentioning

confidence: 99%

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Illness acceptance in adolescents: A concept analysis

2019

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Aim To strengthen the theoretical understanding of illness acceptance in adolescents and to inform healthcare strategies geared toward supporting adolescents with chronic illness. Background Illness acceptance is associated with positive health outcomes. Though well understood in adults with chronic illness, less is known about how this phenomenon ensues in adolescents. Adolescents may have a difficult time accepting an illness due to their unique developmental needs. Consequently, they are vulnerable to poor health outcomes. Design Concept analysis. Data Sources A literature search through 2 databases (PubMed and PsycINFO) and a hand‐search through Google were conducted to identify uses of the concept. Review Methods The Walker and Avant method of concept analysis. Results Four attributes of illness acceptance were identified: understanding of illness, overcoming limitations, normalization, and readiness for responsibility. Antecedents that predisposed illness acceptance included peer and family support, disease management education, and developmental readiness. Positive consequences of illness acceptance included high self‐esteem, improved quality of life, resilience, identity formation, and better disease control. Conclusions Establishing a standardized conceptual understanding of how illness acceptance ensues in adolescents can enable nurses and other health professionals to tailor developmentally appropriate care strategies and optimize the overall quality of life for this unique patient population.

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Section: Resultsmentioning

confidence: 99%

Section: Normalizationmentioning

confidence: 99%

Illness acceptance in adolescents: A concept analysis

2019

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“…In addition, the fears, restrictions, and over‐protectiveness of their parents may also influence the perceptions thalassemia patients have of their ability to adapt to appropriate developmental stages. 6–8…”

Section: Introductionmentioning

confidence: 99%

Future Orientation and Life Expectations of Adolescents and Young Adults with Thalassemia Major^a

Bush

Mandel

Giardina

1998

Annals of the New York Academy of Sciences

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Until recently, Thalassemia Major was considered a fatal disease and patients did not usually live into adulthood. Advances in the medical management of the disease have greatly increased the life expectancy of these patients. The present study aims to evaluate the future orientation and other aspects of psychosocial functioning of thalassemics compared to healthy controls. Thirty patients and 33 healthy subjects of similar age, ethnicity, education, and geographic area were compared on measures of future expectations, perceived social support, life orientation, health locus of control and hopelessness. Results show no significant differences between thalassemics and controls on all measures except for higher levels of internal health locus of control among the patient group. Results and implications of perceptions of thalassemics' future orientation relevant to patient care are discussed.

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“…Rutter and Hersov (1985) found that parents of a diabetic child often go through a period of bereavement or loss and a sense that the child has not lived up to expectations. Georganda (1988) found a similar reaction in parents of adolescents suffering from thalassemia. Although what both Georganda (1988) and Rutter and Hersov (1985) describe is the reaction of parents to their children, adults who have diabetes themselves appear to feel that they are not living up to expectations, albeit that such perceived expectations are irrational.…”

Section: Discussionmentioning

confidence: 55%

“…Georganda (1988) found a similar reaction in parents of adolescents suffering from thalassemia. Although what both Georganda (1988) and Rutter and Hersov (1985) describe is the reaction of parents to their children, adults who have diabetes themselves appear to feel that they are not living up to expectations, albeit that such perceived expectations are irrational. The modern world has little place for those who are unable to cope successfully with life.…”

Section: Discussionmentioning

confidence: 55%

Diabetes Mellitus: Experiencing a Chronic Illness

Cleaver

Pallourios

1994

South African Journal of Psychology

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Diabetes is a chronic, complex disease involving numerous pathophysiological features. There is a paucity of studies relating to psychological factors. The available research is not conclusive and in addition is largely quantitative in nature. The aim of this investigation was to gain an understanding of the life-world of people with diabetes and to acquire insight into the demanding aspects of their lives. The research procedure involved interviewing subjects who suffer from diabetes. A pilot study was conducted in order to test a number of openended questions. On the basis of these results, a set of semi-structured questions was formulated for the main study. The main study involved interviews with 13 subjects aged between 20 and 45 years who belonged to a diabetic organization and who volunteered for the investigation. The interviews were recorded on audiotape and later transcribed. Five of the protocols obtained were analyzed according to the method outlined by Giorgi and they produced an encompassing description of the life-world of a diabetic. The themes which emerged included the appearance of the first symptoms and their effect on people with diabetes, the impact of the diagnosis, the emerging pattern of the life-world of people with diabetes and the prospects for the future. The phenomenological approach proved valuable in highlighting many aspects of diabetes. Recommendations are made which may be of benefit to people with diabetes and their families.Diabetes is 'n chroniese, komplekse siekte waarby verskeie patofisiologiese verskynsels betrokke is. Daar is baie min studies in verband met psigologiese faktore. Beskikbare navorsing lewer nie afdoende antwoorde nie en is boonop meestal kwantitatief van aard. As prosedure vir die huidige navorsing is onderhoude met mense met diabetes gevoer. Nadat 'n reeks loodsvrae vooraf getoets is, is 'n stel oop vrae gebaseer op die resultate van die toetsvrae vir die hoofstudie geformuleer. Die hoofstudie het onderhoude behels met 13 Iyers, tussen die ouderdomme van 20 en 45 jaar, en wat aan 'n organisasie vir diabete behoort en wat vrywillig aan die studie deelgeneem het. Die onderhoude is op oudioband opgeneem en later oorgetik. Die protokolle is ontleed volgens Giorgi se metode en het 'n omvattende beskrywing van die leet-wereld van 'n diabeet daargestel. Temas wat duidelik opval, sluit in die verskyning van die eerste simptome en die effek daarvan op die persoon, die skok wat met die diagnose gepaard gaan, die nuwe lewenspatroon wat die persoon moet volg en die vooruitsigte vir die toekoms. Die fenomenologiese benadering het waardevolle lig gewerp op baie van die aspekte van die siekte. Aanbevelings word gedoen wat moontlik vir persone met diabetes en hul gesinne van waarde kan wees.

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Thalassemia and the adolescent: An investigation of chronic illness, individuals, and systems.

Cited by 13 publications

References 11 publications

Illness acceptance in adolescents: A concept analysis

Illness acceptance in adolescents: A concept analysis

Future Orientation and Life Expectations of Adolescents and Young Adults with Thalassemia Major^a

Diabetes Mellitus: Experiencing a Chronic Illness

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Thalassemia and the adolescent: An investigation of chronic illness, individuals, and systems.

Cited by 13 publications

References 11 publications

Illness acceptance in adolescents: A concept analysis

Illness acceptance in adolescents: A concept analysis

Future Orientation and Life Expectations of Adolescents and Young Adults with Thalassemia Majora

Diabetes Mellitus: Experiencing a Chronic Illness

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Product

Resources

About

Future Orientation and Life Expectations of Adolescents and Young Adults with Thalassemia Major^a