Acceptance and denial: implications for people adapting to chronic illness: literature review

Telford, Kerry; Kralik, Debbie; Koch, Tina

doi:10.1111/j.1365-2648.2006.03942.x

Cited by 181 publications

(186 citation statements)

References 53 publications

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“…Hope is not a denial; rather, it is a way of looking at the world and seeing that there is a possibility to feel that it must not be as bad as it looks. The parents were all aware of the severity of the disease and having hope was helpful, also described in previous studies [24][25][26][27].…”

Section: Discussionmentioning

confidence: 97%

Parents’ Experiences of When an Adult Child Is Seriously Ill—“It Does Not Matter That It Is a Grown-Up Person, They Are Still Your Child”

Molander¹

2015

JHS

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Purpose and Topic: A longer life expectancy is expected to rise continuously in all populations on all continents. Older parents are at risk of having to accompany their adult children through a severe illness, sometimes even to their death. The present study investigates the experiences of being a parent to an adult child with a severe illness and what support was helpful during the child's period of illness. Method: A qualitative approach with in-depth interviews which were analyzed using content analysis. Results: The results showed that a common perception was that it is very special to have a child with a severe illness. The underlying elements of existential experience and the relationship both influenced the parents' conceptions of life and permeated the whole situation. There were four areas that the parents found important and influenced how they could manage the situation: having information, participation, strategies to cope with the situation, and support. Conclusions: Accompanying an adult child through a severe and potentially fatal disease in the context of a growing elderly population will become an increasingly frequent problem. So far there is limited research in this area and more research should be a high priority in the future.

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Section: Discussionmentioning

confidence: 97%

Parents’ Experiences of When an Adult Child Is Seriously Ill—“It Does Not Matter That It Is a Grown-Up Person, They Are Still Your Child”

Molander¹

2015

JHS

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“…Supporting Telford, Kralik, & Koch's (2006) argument, we highlight the pitfalls of using the terms "acceptance" and "avoidance" in the way that is traditionally done in texts on coping strategies. We question the label of "avoidance-based coping" as inevitably maladaptive, because in our study it protected children from becoming overwhelmed by their worries and sense of helplessness.…”

Section: Discussionmentioning

confidence: 99%

Pakistani Children’s Experiences of Growing Up With Beta-Thalassemia Major

2014

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In this study, we explored the lived experience of children with β-thalassemia major (β-TM). We considered children as experts on their experiences in contrast to the prevalent approach of asking parents or other adults about children's perspective. The sample consisted of 12 children, aged 8 to12 years. There were two stages to data collection. In stage one we employed two focus group discussions and two role-plays and analyzed the data thematically. This directly informed stage two, consisting of 12 in-depth interviews subjected to interpretative phenomenological analysis (IPA). From our findings we show that living with β-TM involves a continuous struggle between feelings of being different and strategies to minimize these differences to strive for normalcy. We suggest that understanding the experiences of living with β-TM from children's perspective can provide unique insights into their experiences which can fill the gap in the existing, predominantly adult-oriented, research on chronic illness. KeywordsAsia, South / Southeast; children, illness and disease; coping and adaptation; developing countries; interpretative phenomenological analysis (IPA); illness and disease, experiences; lived experience Beta-thalassemias are a group of inherited hematological disorders caused by a mutation in the beta (β)-globin chain of hemoglobin. β-thalassemia major (β-TM) is the most severe type, which involves either a complete lack of β-globulin in the hemoglobin or abnormally low β-globulin production causing life-threatening anemia. It occurs worldwide but is more common in Mediterranean populations, the Middle East, Indian subcontinent, and Southeast Asia (Higgs, Thein, & Wood, 2001) and is usually diagnosed within the first year of life. If untreated or under-treated, it can lead to an enlarged spleen and/or liver, bone deformities, and spontaneous fractures. Managing β-TM requires patients to have lifelong access to regular blood transfusions, every two to four weeks. However, because β-TM is associated with increased iron absorption by the gastro-intestinal system, repeated transfusions cause iron overload, which can damage the heart, liver, and other organs (Higgs et al., 2001). Blood transfusions are therefore supported with daily use of chelating agents such as deferoxamine and deferiprone.Existing psychosocial research in β-TM suggests that lifelong blood transfusions and chelation pose major demands on children and their families. Previous studies have reported a higher incidence of depressive and anxiety disorders and an impaired general functioning in β-TM patients (e.g., Sadowski et al., 2002). Clinical complications have also been found to impact negatively on children's self-concept (e.g., Yalçan et al., 2007). Similarly, other researchers have In these conflicting previous studies, the researchers have mainly employed standardized measures of psychosocial functioning which might not be sufficiently sensitive to capture the meanings that children give to their experiences (Woodgate, 1998). Furtherm...

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“…Both explored its relationship to marital adjustment and the findings were inconsistent (17;18). The paucity of research into acceptance is surprising given the enduring belief held by many patients and health professionals that developing an acceptance of the disease is critical for adjustment (19).…”

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confidence: 99%

Cognitive and behavioural correlates of different domains of psychological adjustment in early-stage multiple sclerosis

Dennison

Moss‐Morris

Silber

et al. 2010

Journal of Psychosomatic Research

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Objective: This study investigated a cognitive-behavioural model of adjustment to Multiple Sclerosis (MS). It aimed to determine the contribution of cognitions and behaviours to the explanation of two distinct adjustment outcomes above and beyond measures of MS severity. Illness-related functional impairment was anticipated to be most strongly related to unhelpful thoughts and behaviours that were specific to MS and the experience of symptoms. Psychological distress was hypothesised to be most strongly related to more general unhelpful cognitions about the self and emotions.Methods: 94 people with MS completed questionnaires. Correlations and hierarchical multiple regressions determined the relative contribution of illness severity, cognitions, and behaviours to the prediction of psychological distress and functional impairment.Results: Illness-related functional impairment was related to disease severity, progressive vs. relapsing-remitting disease and unhelpful illness perceptions and cognitive and behavioural responses to symptoms. Illness severity factors accounted for a significant 23.7% of the variance in functional impairment (p<.001). Cognitive and behavioural variables explained a further 22.6% of variance (p<.001) with behavioural responses to symptoms emerging as the strongest predictor. The correlates of distress were unhelpful beliefs about the self, unhelpful beliefs about emotions, acceptance, and unhelpful cognitive responses to symptoms and illness perceptions. Illness severity factors explained only 2.2% of the variance in distress (p>.05) while cognitive and behavioural variables accounted for 37.1% (p<.001). Unhelpful beliefs about the self were the strongest predictor. Conclusion:Longitudinal and experimental research is required to investigate potential causal relationships. However, the cognitions and behaviours identified as important for adjustment are potentially modifiable, so may be useful to address within interventions for adjustment to MS.

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Acceptance and denial: implications for people adapting to chronic illness: literature review

Cited by 181 publications

References 53 publications

Parents’ Experiences of When an Adult Child Is Seriously Ill—“It Does Not Matter That It Is a Grown-Up Person, They Are Still Your Child”

Parents’ Experiences of When an Adult Child Is Seriously Ill—“It Does Not Matter That It Is a Grown-Up Person, They Are Still Your Child”

Pakistani Children’s Experiences of Growing Up With Beta-Thalassemia Major

Cognitive and behavioural correlates of different domains of psychological adjustment in early-stage multiple sclerosis

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