Neurocognitive outcome and associated factors in long-term, adult survivors of childhood acute lymphoblastic leukemia, treated without cranial radiation therapy.

OBJECTIVE: There is limited research on neurocognitive outcome and associated risk factors in long-term, adult survivors of childhood acute lymphoblastic leukemia (ALL), without treatment of cranial radiation therapy. Moreover, the impact of fatigue severity and pain interference on neurocognition has received little attention. In this cross-sectional study, we examined neurocognitive outcome and associated factors in this population. METHOD: Intellectual abilities, verbal learning/memory, processing speed, attention, and executive functions were compared to normative means/medians with one sample t tests or Wilcoxon signed-rank tests. Associations with risk factors, fatigue severity, and pain interference were analyzed with linear regressions. RESULTS: Long-term, adult survivors of childhood ALL (N = 53, 51% females, mean age = 24.4 years, SD = 4.4, mean = 14.7 years post-diagnosis, SD = 3.4) demonstrated above average intellectual abilities, but performed below average in attention, inhibition, processing speed, and shifting (p < 0.001). Executive functioning complaints were significantly higher than normative means, and positively associated with fatigue (p < 0.001). There was no interaction between sex and fatigue and no neurocognitive impairments were associated with pain interference, risk group, age at diagnosis, or sex. CONCLUSIONS: Long-term, adult survivors of ALL treated without cranial radiation therapy, demonstrate domain-specific performance-based neurocognitive impairments. However, continued research on the neurocognitive outcome in this population as they age will be important in the coming years. Executive functioning complaints were frequently in the clinical range, and often accompanied by fatigue. This suggests a need for cognitive rehabilitation programs.

Protective and risk factors in the grieving process among cancer-bereaved parents: A qualitative study.

This Norwegian nationwide study explored cancer-bereaved parents' perceptions of protective and risk factors in their grieving process. A total of 162 parents answered two open-ended questions 2-8 years after their child's death due to cancer. Qualitative analysis revealed three main themes: memories of the child's illness and death, going forward in life, and relationships-a resource and a barrier. The results support the perspective of going forward in life and accepting grief as part of life, contrary to the notion of "getting over" or "detaching" from the deceased child. Social support is also crucial for cancer-bereaved parents.

Impact of resilience and social support on long-term grief in cancer-bereaved siblings: an exploratory study.

BACKGROUND: Bereavement research has mainly explored potential risk factors associated with adverse outcomes, and the role of protective factors has received less attention. More knowledge is needed about factors related to unresolved grief in bereaved siblings. This study aimed to assess grief adjustment and possible gender differences among bereaved young adults 2-10 years after losing a brother or sister to cancer. We also sought to explore how resilience and social support influenced their grief. METHODS: A total of 99 young adults (18-26 years) who had lost a brother or sister to cancer between the years 2009 and 2014 were invited to participate in this Norwegian nationwide study. The study-specific questionnaire was completed by 36 participants (36.4%). Social support during the sibling's illness, after the death, and during the past year, in addition to grief and resilience, were measured. RESULTS: Overall, the prevalence of unresolved grief was 47.2% among bereaved siblings, whereas 52.8% had worked through their grief. The level of having worked through grief and resilience was similar between male and female siblings. Bereaved siblings with higher Personal Competence reported lower unresolved grief. CONCLUSION: Approximately half of the young adults experience unresolved grief 2-10 years after losing a sibling to cancer. The findings also highlight the need for long-term support for bereaved siblings to help improve their resilience and better have worked through their grief.

Cognitive Rehabilitation for Neurocognitive Late Effects in Adult Survivors of Childhood Acute Lymphoblastic Leukemia: A Feasibility and Case-Series Study.

Neurocognitive late effects following the diagnosis and treatment of childhood acute lymphoblastic leukemia (ALL) commonly include impaired executive functions (EFs), with negative consequences for one's health-related quality of life and mental health. However, interventions for EF impairments are scarce. Thus, the aims of this study were to (1) explore the feasibility and acceptability of the cognitive rehabilitation program Goal Management Training (GMT) and (2) examine whether GMT is associated with positive outcomes across cases of ALL survivors with EF complaints. Four participants (median age 31.5 years) underwent nine GMT modules in a total of five group sessions. Rehabilitation was focused on compensatory strategies to improve real-life EFs. Participants were evaluated at 2-week and 6-month follow-ups. Evaluation of feasibility and acceptability included adherence, a semi structured interview, self-reports, and safety. Additionally, therapists' experience with implementation was evaluated. Outcome measures included self-reports and neurocognitive tests of attention, EF, and processing speed. All participants completed GMT and rated the intervention as useful, suitable, and satisfactory. The reliable change index showed improved daily life EFs (two participants) and neurocognitive performance (three participants) at 6-month follow-up. Additionally, all participants improved on a "real-life" task involving EF. A future randomized controlled trial is recommended.

Bereaved parents' quality of life: resilience and professional support.

OBJECTIVES: The study aimed to compare the quality of life (QoL) among cancer-bereaved parents with a control group and explore how resilience and support from healthcare professionals associated with QoL of parents 2-8 years after the loss of a child to cancer. METHODS: This nationwide, cross-sectional survey was administered among parents (n=161) who lost their child to cancer between 2009 and 2014, compared with a matched control parent group (n=77). A study-specific questionnaire, Resilience Scale for Adults (six factors: 'Perception of self', 'Planned future', 'Social competence', 'Structured style', 'Family cohesion' and 'Social resources'), and a single-item measure of parents' QoL were included for the study. RESULTS: There was a lower QoL in both bereaved parents (mean=5.1) compared with the control parents (mean=5.8) (p<0.001). Two resilience factors, 'Perception of self' (OR=1.8, p=0.004) and 'Planned future' (OR=2.05, p<0.001), and given sufficient information during the child's last month (OR=2.63, p=0.003) were positively associated with long-term QoL in cancer-bereaved parents. CONCLUSION: The findings indicate lower QoL among both fathers and mothers 2-8 years after losing a child to cancer. The study also highlights the positive role of resilience and the importance of informational support on long-term QoL in cancer-bereaved parents. Bereavement support should be tailored for supporting individual needs.

Resilience as a predictive factor towards a healthy adjustment to grief after the loss of a child to cancer.

INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss. METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss. RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief. CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.

Exploring MEST: a new universal teaching strategy for school health services to promote positive mental health literacy and mental wellbeing among Norwegian adolescents.

BACKGROUND: Mental health among adolescents is an important public health challenge. School health services perform central public health functions in Norwegian municipalities, where school nurses are uniquely positioned to educate and promote mental health among adolescents. MEST (MEST is not an acronym; MEST is a short version of the Norwegian word for coping) is a newly developed universal working strategy for school health services that aims to promote positive mental health literacy (MHL) and mental wellbeing in the adolescent population. The aim of this study was to investigate the potential outcome mean differences in positive MHL and mental wellbeing between adolescents who participated and those who did not participate in MEST over a school year. METHODS: This study is based on cohort data collected from 357 adolescents (aged 15-21 years) in five Norwegian upper secondary schools at the beginning and end of the 2016/2017 school year. The data were analyzed by describing mean scores and estimating the average treatment effect (ATE) of MEST on positive MHL and mental wellbeing. RESULTS: Positive MHL increased significantly more among the MEST participants compared to the non-MEST participants (p = .02). No significant change in mental wellbeing was found between MEST and non-MEST participants (p = .98). Estimating the ATE of MEST on positive MHL, the MEST participants showed a significant 2.1% increase (p = .04) in the potential outcome mean of positive MHL compared to the nonparticipants. Estimating the ATE of MEST on mental wellbeing, the girls who attended MEST exhibited a significant 9.7% increase (p = .03) in the potential outcome mean of mental wellbeing compared with the girls who did not attend MEST, while no significant change (p = .99) was detected among boys or the entire sample of both genders combined (p = .12). CONCLUSION: This study found a significant ATE of MEST on positive MHL and on mental wellbeing among girls. The results support further investments in studying MEST as a promising work strategy for school health services to promote adolescent mental health. This initial study of MEST may be used as a foundation for investing in future evaluations of MEST.

Cancer-bereaved siblings' positive and negative memories and experiences of illness and death: A nationwide follow-up.

OBJECTIVE: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death. METHOD: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation. RESULTS: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences. SIGNIFICANCE OF RESULTS: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.

Positive mental health literacy: development and validation of a measure among Norwegian adolescents.

BACKGROUND: Mental health literacy (MHL), or the knowledge and abilities necessary to benefit mental health, is a significant determinant of mental health and has the potential to benefit both individual and public mental health. MHL and its measures have traditionally focused on knowledge and beliefs about mental -ill-health rather than on mental health. No measures of MHL addressing knowledge of good or positive mental health have been identified. AIM: This study aimed to develop and validate an instrument measuring adolescents' knowledge of how to obtain and maintain good mental health and to evaluate the psychometric properties of the instrument. More specifically, the factor structure, internal and construct validity, and test-retest reliability were assessed. METHODS: The participants were Norwegian upper secondary school students aged 15-21 years. The development and validation of the instrument entailed three phases: 1) item generation based on the basic psychological needs theory (BPNT), focus group interviews, and a narrative literature review, 2) a pilot study (n = 479), and 3) test-retest (n = 149), known-groups validity (n = 44), and scale construction, item reduction through principal component analysis (PCA), and confirmatory factor analysis (CFA) for factor structure and psychometric properties assessment (n = 1888). RESULTS: Thirty-two items were initially generated, and 15 were selected for the pilot study. PCA identified cross-loadings, and a one-factor solution was examined. After removing five problematic items, CFA yielded a satisfactory fit for a 10-item one-factor model, referred to as the mental health-promoting knowledge (MHPK-10) measure. The test-retest evaluation supported the stability of the measure. McDonald's omega was 0.84, and known-groups validity test indicated good construct validity. CONCLUSION: A valid and reliable one-dimensional instrument measuring knowledge of factors promoting good mental health among adolescents was developed. The instrument has the potential to complement current measures of MHL and may be useful when planning mental health promotion activities and evaluating public mental health education initiatives in adolescents.

Impact of social support on bereaved siblings' anxiety: a nationwide follow-up.

PURPOSE: To assess adolescent and young adult siblings' perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. METHOD: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. RESULTS: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters' last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters' death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. CONCLUSION: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings' risk of anxiety.