| 1. |
- Anclair, Malin
(författare)
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Childhood brain tumours : health and function in adult survivors and parental fears
- 2009
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The general aim of the present research was to investigate health and functional ability of patients treated for childhood brain tumour and systematically examine parental fears after a child s brain tumour. The aims were realised through two part-studies. Childhood cancer once regarded as an acute fatal illness has become a life threatening disease. Previous studies of the long-term sequelae in survivors of children treated for a brain tumour reflect the fact that most children who do survive their tumour rarely escape without some kind of long-term consequences. The range of late effects encountered is wide, affecting any organ, system, tissue or function with variation in aetiology, timing of onset, severity and complexity. Psychological research addressing parents of children treated for childhood cancer indicates that, intrusive thoughts, avoidance, and arousal, fears and uncertainty are among the most common adverse psychological consequences. In the case of central nervous system (CNS) tumours where disease and treatment tends to be unique, and where the risk for permanent late sequelae is high, parental distress, and illness-related threat can be expected to be even greater. Data collection in study one targeted 708 eligible >18 years old childhood CNS tumour (CCNST) survivors for whom > 5 years had passed since diagnosis, 708 parent proxies, and 1,000 general population controls. Functional disability, sensory and cognitive impairment, emotional status and pain were assessed using the Health Utilities Index Mark2/3 (HUI2/3). Parents in study two were asked to rate the extent to which they experienced a set of specific fears related to their child s brain tumour and its treatment. Outcomes for parents of CNS tumour patients (n= 82) were compared to those of reference parents of patients treated for acute lymphoblastic leukaemia (n=208), and analysed in relation to treatment situation and time elapsed since diagnosis. Findings indicate that adult CCNST survivors in this population-based cohort suffered from persistent deficits in cognition, sensory functions, mobility, and self-care, whereas no emotional and pain sequels were demonstrated. Oligodendroglioma, mixed and unspecified glioma, intra-cranial germ cell tumour, and medulloblastoma survivors had the poorest overall health status. The fears concerning a future cancer recurrence and concerning late effects of treatment were most prominent among parents of CNS tumour patients. More than one in four parents expressed fears of a complete decline when thinking about their child s future. The continuous need for check-ups for possible signs of a recurrence of the illness, in the case of CNS tumours in particular, serves as a reminder to parents about the unpredictability of the final outcome that keeps the fear of a relapse alive. In conclusion, adult survivors of childhood CNS tumours are at high risk for significant functional and health-related late effects. Parental fears about health-related late effects of treatment appear as justified. The most prominent fear for parents of childhood CNS tumour patients is that of a recurrence of the cancer. Long-term surveillance should include information and support measures adapted for these parents and survivors who face unique existential challenges to live with disability and the threat of a cancer recurrence.
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| 2. |
- Anclair, Malin, et al.
(författare)
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Cognitive behavioural therapy and mindfulness for health-related quality of life : Comparing treatments for parents of children with chronic conditions: A pilot feasibility study
- 2017
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Ingår i: Clinical Practice and Epidemiology in Mental Health. - Sharjah, U.A.E : Bentham Open. - 1745-0179. ; 13:1, s. 1-9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Research on parents of children with chronic conditions has shown that this parent group frequently suffers from psychological problems such as deteriorating life quality and stress-related disorders. Objective: The present feasibility study focuses on Health-Related Quality of Life (HRQOL) and life satisfaction of parents of children with chronic conditions. Method: The study was conducted using a repeated measures design and applied either group-based cognitive behavioural therapy (CBT; n = 10) or a group-based mindfulness programme (MF; n = 9). The study participants were wait-listed for six months. Results:The results indicate improvements for participants in both treatment groups regarding certain areas of HRQOL and life satisfaction. After eight group therapy sessions, parents in the two treatment groups significantly improved their Mental Component Summary (MCS) scores as well as their scores on the mental subscales Vitality, Social functioning, Role emotional and Mental health. In addition, some of the physical subscales, Role physical, Bodily pain and General health, showed considerable improvement for the MF group. When testing for clinical significance by comparing the samples with mean values of a norm population, the MCS scores were significantly lower at pre-measurements, but no significant differences were observed post-measurement. For the Physical component summary (PCS) scores, a significantly higher score was observed at post-measurement when compared to the norm population. Moreover, the results indicate improvement in life satisfaction regarding Spare time, Relation to child and Relation to partner. Conclusion: The study concludes that CBT and mindfulness may have a positive effect on areas of HRQOL and life satisfaction.
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| 3. |
- Anclair, Malin, et al.
(författare)
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Cognitive behavioural therapy and mindfulness for stress and burnout : a waiting list controlled pilot study comparing treatments for parents of children with chronic conditions
- 2018
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Ingår i: Scandinavian Journal of Caring Sciences. - : John Wiley & Sons. - 0283-9318 .- 1471-6712. ; 32:1, s. 389-396
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundParents of children with chronic conditions often experience a crisis with serious mental health problems for themselves as a consequence. The healthcare focus is on the children; however, the parents often worry about their children's health and future but are seldom offered any counselling or guidance.AimThe aim of this study was to investigate the effectiveness of two group-based behavioural interventions on stress and burnout among parents of children with chronic conditions.Design, participants and settingAfter a waiting list control period (n = 28), parents were offered either a cognitive behavioural (CBT, n = 10) or a mindfulness program (MF, n = 9).ResultsBoth interventions decreased significantly stress and burnout. The within-group effect sizes were large in both interventions (CBT, g = 1.28–1.64; MF, g = 1.25–2.20).ConclusionsHence, the results of this pilot study show that treating a group using either CBT or mindfulness can be an efficient intervention for reducing stress levels and burnout in parents of children with chronic conditions.
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| 4. |
- Anclair, Malin, et al.
(författare)
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Cognitive behavioural therapy for stress-related problems : Two single-case studies of parents of children with disabilities.
- 2014
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Ingår i: Clinical Case Studies. - : Sage Publications. - 1534-6501 .- 1552-3802. ; 13:6, s. 472-486
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Tidskriftsartikel (refereegranskat)abstract
- Many parents who have children suffering from some form of chronic illness or mental disorder may experience chronic stress reactions of various types. Cognitive behavioral therapy (CBT) has been proved to be effective in reducing stress-related problems, but there seems to be no study to date in which CBT has been tested on this specific parent group. Two case studies were therefore performed. Case 1 centered on a 47-year-old married woman, who has lived in Sweden for 12 months. She described how she had become increasingly exhausted, and she wanted help to find strategies enabling her to cope with everyday life. Case 2 featured a 45-year-old single mother, who had been on part-time sick leave due to depression and stress. She described how she had always been anxious and worried and had had two episodes of depression. Both women had sons diagnosed with autism/Asperger syndrome. One of the women met the criteria for pathological burnout, while the other woman was just below the limit. The focus of the therapy for both women was on exhaustion, depression, and sleeping difficulties. In addition, therapy in Case 1 involved under-stimulation and in Case 2, anxiety. When the therapy ended, genuine improvements were registered for both clients. The results show that CBT can be an effective treatment of symptoms for this group of parents so that they can provide adequate support to their children, thus facilitating everyday life for a child with a chronic illness or disorder.
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| 5. |
- Anclair, Malin
(författare)
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Fears, Stress and Burnout in Parents of Children with Chronic Conditions : Treatment with Cognitive Behavioural Therapy and Mindfulness
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- The aim of the present research was threefold: to investigate the fears of parents of children with chronic conditions; to evaluate the effectiveness of their treatment with either mindfulness-based therapy or cognitive behavioural therapy (CBT); and to assess treatment outcome in terms of health-related quality of life (HRQoL). Long-term stress can lead to some form of chronic stress reaction. In study one, fears of future cancer recurrence and of late effects of treatment were most prominent among parents of CNS tumour patients. Study two investigated the effectiveness of two group-based interventions on stress and burnout among parents of children with chronic conditions. Parents were offered either a CBT or a mindfulness programme. Both interventions significantly decreased stress and burnout. Study three focused on the HRQoL and life satisfaction of the parents in study two. The results indicate improvements for participants in both treatment groups regarding certain areas of HRQoL and life satisfaction. To conclude, fears concerning future cancer recurrence and late effects of treatment are most prominent among parents of children with cancer. Another conclusion is that CBT and mindfulness decrease stress and burnout and may have a positive effect on areas of HRQoL and life satisfaction.
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| 6. |
- Anclair, Malin, et al.
(författare)
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Parental fears following their child's brain tumor diagnosis and treatment.
- 2009
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Ingår i: Journal of pediatric oncology nursing : official journal of the Association of Pediatric Oncology Nurses. - : SAGE Publications. - 1043-4542 .- 1532-8457. ; 26:2, s. 68-74
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Tidskriftsartikel (refereegranskat)abstract
- The objective of this study is to portray the illness-related threats experienced by parents of children after the diagnosis of central nervous system (CNS) tumor. Parents were asked to rate the extent to which they experienced a set of specific fears related to their child's brain tumor and its treatment. Outcomes for parents of CNS tumor patients (n = 82) were compared with those of reference parents of patients treated for acute lymphoblastic leukemia (n = 208). The fears about an illness recurrence and the late effects of treatment were most prominent among parents of CNS tumor patients. For 7 out of 11 kinds of fear, parents of CNS tumor patients expressed a stronger fear than the reference group. More than a quarter of the parents of children treated for CNS tumors feared a complete decline of the child. Parents of CNS tumor patients experience relatively heightened cancer related fears in several domains. The fear of devastating consequences felt by one fourth of parents signals the need of individualized psychological support and information at diagnosis and follow-up to facilitate parental coping with the posttreatment situation.
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| 7. |
- Boman, K K, et al.
(författare)
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Health and persistent functional late effects in adult survivors of childhood CNS tumours: a population-based cohort study.
- 2009
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Ingår i: European journal of cancer (Oxford, England : 1990). - : Elsevier BV. - 1879-0852 .- 0959-8049. ; 45:14, s. 2552-61
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Tidskriftsartikel (refereegranskat)abstract
- Survivors of central nervous system (CNS) tumours are particularly vulnerable to tumour- and treatment-related disability. We present the incidence of specific and overall functional and health-related late effects in a national adult survivor cohort. Diagnostic subgroups at particular risk for persistent sequels are identified. Data collection targeted 708 eligible >18 years old survivors, 708 parent proxies and 1000 general population controls. Functional disability including sensory and cognitive impairment, emotional status and pain was assessed using the Health Utilities Index Mark 2/3 (HUI2/3). Survivors and controls, and diagnostic subgroups were contrasted to identify the general and relative risk for late effects by sub-diagnosis. Survivors had persistent late effects in sensation, mobility, self-care and cognition. Deficits in these domains indicated clinically important disability in overall health, although indices of emotion and pain were unaffected compared to controls. Late effects tended to aggravate with time, and female survivors had poorer health. Oligodendroglioma, mixed/unspecified glioma, intracranial germ cell tumour and medulloblastoma survivors had poorest overall health. Least late effects were found for other specified/unspecified CNS tumours (including meningeoma and nerve sheath tumours), and for astrocytoma. An impact on educational, vocational and family-related outcomes, and higher utilisation of social insurance or government subsidies validated health-related sequelae in adulthood. Comparisons with controls confirm persistent disability in multiple functional domains in adult CNS tumour survivors. The heightened proportion of survivors presenting severe disability is a factor that specifically differentiates survivors from controls, although diagnostic subgroups differ significantly regarding the amount and severity of late effects.
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| 8. |
- Henriksson, Sophie, et al.
(författare)
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Effectiveness of cognitive behavioral therapy on health-related quality of life : An evaluation of therapies provided by trainee therapists
- 2016
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Ingår i: Scandinavian Journal of Psychology. - : Wiley-Blackwell. - 0036-5564 .- 1467-9450. ; 57:3, s. 215-222
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Tidskriftsartikel (refereegranskat)abstract
- The present study was carried out to examine the treatment effect of cognitive behavioral therapy provided by trainee therapists at a university clinic, focusing on health-related quality of life (HRQOL) optimism and symptoms. The study was conducted through a repeated measures design and included a treatment group (n = 21), which received cognitive behavioral therapy for an average of 10.7 therapy sessions and a control group (n = 14), that was put on a wait list for 8.6 weeks on average. After treatment, the treatment group improved significantly concerning general health (p = 0.028) and optimism (p = 0.027). In addition, clients improved in several areas within mental health and displayed some reduction in anxiety symptoms. Concurrently, the results also indicated some improvement within the control group, which may have been caused by the initial therapeutic contact, expectancy effects or spontaneous remission. The study concluded that cognitive behavioral therapy provided by trainee therapists may have a positive effect on areas within HRQOL and optimism.
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| 9. |
- Hoven, Emma, et al.
(författare)
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The Influence of Pediatric Cancer Diagnosis and Illness Complication Factors on Parental Distress
- 2008
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Ingår i: Journal of pediatric hematology/oncology (Print). - 1077-4114 .- 1536-3678. ; 30:11, s. 807-814
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Tidskriftsartikel (refereegranskat)abstract
- Objective: We investigated how primary diagnosis and risk for diagnosis-related complication factors influence parental distress after a childs cancer diagnosisMethods: We used a model in which "complicated childhood cancers" were grouped into 1 category after identifying a set of potentially influential illness complication variables. This category included central nervous system tumors, acute myeloid leukemia, and bone tumors. Parental distress in that category (n = 144) was compared with distress after acute lymphoblastic leukemia (n = 177) in the child. In addition, comparisons were made between parents of the specific diagnosis groups. A multidimensional questionnaire assessing symptoms of distress was used.Results: Parents in the complicated cancer category showed significantly heightened disease-related fear, anxiety, depression, loss of control, late effects-related uncertainty, and poorer self-esteem compared with parents of children with acute lymphoblastic leukemia. Significantly heightened parental distress was associated with the child having been treated with cranial irradiation.Conclusions: Relatively heightened distress in parents of children with complicated cancer is influenced by diagnosis-related factors like an intricate prediagnostic phase, and uncertainty about late effects. Heightened vulnerability to distress signals exceptional needs for support and information among parents of children treated for central nervous system or bone tumors.
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