Portuguese Caregivers of Persons With Alzheimer's Disease in the Context of the COVID-19 Pandemic: A Qualitative Study of the Grieving Process.

This study addresses the experiences of informal caregivers caring for elderly family members with Alzheimer's disease (AD) during the COVID-19 pandemic. The study includes a sample of eight informal caregivers who were evaluated through a semi-structured interview six months after the death of a loved one they cared for. A thematic content analysis was applied to the interviews and yielded two higher-order domains: (1) Experiencing the AD and the death of a family member and (2) The grieving process during the COVID-19 pandemic. The results provide valuable insights into family caregivers' experiences regarding the profound emotional impact of caregiving and grief during the COVID-19 pandemic. Caregivers maintain their identity even after loss, underscoring the enduring impact of caregiving. The identity as a caregiver impacted coping and grief responses, highlighting the need for tailored interventions.

Parental burnout during COVID-19: The moderating role of anxiety and family functioning.

Parental burnout (PB) is characterised by parental exhaustion resulting from exposure to chronic parental stress. Due to the social and economic changes resulting from the COVID-19 pandemic that impacted families, there is a significant scientific interest in identifying factors related to PB within the pandemic context. This study aimed to analyse the relationships between parental stress (parental concerns, parental satisfaction, lack of control, and fears and anxieties), family functioning, psychological morbidity (anxiety and depression), and burnout in parents. The sample consisted of 253 parents, legal guardians or primary caregivers of children aged between 0 and 6 years. Results revealed that the child's age, psychological morbidity (depression), and parental stress were significant predictors of PB. Anxiety and family functioning played a moderating role in the relationship between parental satisfaction and PB. According to the results, intervention programs should focus on anxiety symptoms and family functioning to mitigate the effects of parental stress on PB.

Perceptions and Experiences of Parents of Burn-Injured Children during Hospital Stay: A Need for Integrated Care.

Pediatric burn injuries are a critical medical condition that triggers a series of ongoing multifactorial stressors that affect both children and their families. To inform healthcare research and clinical practice, this study aimed to understand and describe the perceptions and experiences of the parents of burn-injured children during hospital stay. Forty-six parents (thirty-eight mothers) of forty-six children (eighteen girls) with a mean age of 2.28 years (SD = 1.52) answered ten open-ended questions. This qualitative study was conducted in a referral hospital in the northern region of Portugal. Qualitative data were analyzed using an inductive content analysis. Five key themes emerged from the data analysis: diving into the crisis of the child burn injury, being together and in good hands, becoming aware of an uncertain future, enhancing supportive care and environment, and finding ways to guide parents. Qualitative findings underlined the pressing need for integrated care within this context. Parents were significantly burdened and distressed during the inpatient phase. These parents should be included in the integrated care plan starting from admission. Understanding and addressing parents' healthcare needs and psychosocial adjustment difficulties is paramount to the development of future intervention programs and the delivery of suitable integrated healthcare.

Burden and quality of life of family caregivers of Alzheimer's disease patients: the role of forgiveness as a coping strategy.

OBJECTIVES: This study aimed to evaluate the variables that  were associated, contributed and moderated quality of life (QoL) and burden in family caregivers. METHODS: A total of 130 participants were evaluated using the following instruments: Depression, Anxiety and Distress Scale; Index of Family Relations; Heartland Forgiveness Scale; Burden Interview Scale; Short Form Health Survey. RESULTS: Being a younger caregiver, less distress, better family relationships and greater use of forgiveness were associated with more QoL. Also, family caregivers who chosethe caregiving role, less distress, better family relationships and greater use of forgiveness showed lower levels of burden. Age, distress and forgiveness contributed to QoL. In turn, the choice to become a family caregiver, distress, and forgiveness contributed to burden. Forgiveness played a moderating role in the relationship between family relationships and burden. CONCLUSION: Based on the results, there is a need to intervene in older family caregivers, particularly those who did not choose to become a caregiver, who report greater distress, have worse family relationships, and display less use of forgiveness, in order to decrease their burden and promote QoL.

Portuguese Validation of the TAPQoL: A Health-Related Quality of Life Instrument for Children Aged 0-6 Years.

In Portugal, there are few generic and specific instruments to assess health-related quality of life (HRQoL) in children, especially those of preschool age. This study aimed to adapt and validate the Portuguese version of the Preschool Children Quality of Life Questionnaire (TAPQoL) in a community and clinical sample of children aged 0-6 years. The parents of 409 healthy children and 137 children undergoing treatment for burns and acute lymphoblastic leukemia completed the TAPQoL and were assessed on psychological morbidity and family functioning. Exploratory and confirmatory factor analyses were performed, as well as analysis of the psychometric properties as shown by internal consistency measures, convergent validity, and average variance extracted. Confirmatory factor analysis confirmed an 11-factor structure with good psychometric properties. The current version of the TAPQoL is a valid and reliable instrument for assessing HRQoL in Portuguese preschool children in community and clinical settings.

Parental distress in childhood acute lymphoblastic leukemia: A systematic review of the literature.

The present study is a systematic review of factors and consequences of parental distress following their children's acute lymphoblastic leukemia (ALL) diagnosis. PubMed, Web of Science, and APA PsycInfo databases were searched. Twenty-eight papers were included, with only three longitudinal studies. Fifteen studies explored factors of parental distress, including sociodemographic, psychosocial, psychological, family, health, and ALL-specific variables. Correlations were found between social support, illness cognitions, coping strategies, and parental distress, as well as contradictory results regarding sociodemographic variables. Family cohesion and the overall impact of illness were associated with parental distress. Resilience factors contributed negatively to parental distress symptoms, and perceived caregiver strain and negative child's emotional functioning contributed positively. Thirteen papers explored the consequences of parental distress, including psychological, family, health, and social/education factors. Distress was correlated with care burden and contributed to family strain, child's symptom burden, and parental protective behavior. Significant correlations were found between parental distress, at diagnosis, and further adjustment of parents and children. Most papers reported correlations between parental distress and psychological condition and quality of life; few studies reported no association. Correlations between maternal depression and child's participation in education and social life were found. Differences on distress were found regarding parents' gender, age, children's group risk, and treatment phases. Longitudinal studies are needed to better understand the phenomenon and its consequences. Future interventions should address parents' mental health needs in an early and ongoing assessment in order to promote healthier outcomes. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Effectiveness of auricular acupuncture and pelvic floor muscle training in the management of urinary incontinence following surgical treatment for prostate cancer: A randomized clinical trial.

PURPOSE: To evaluate the effectiveness of auricular acupuncture combined with pelvic floor muscle training to manage urinary incontinence following radical prostatectomy. METHODS: This is a randomized clinical trial that was conducted between April 2019 and April 2020 with 60 participants allocated into two groups, namely: control (pelvic muscle training) and intervention (auricular acupuncture + pelvic muscle training). Interventions were carried out during eight weekly sessions. Generalized estimating equations and proportion difference tests were applied in the statistical analysis with a significance level of 0.05. RESULTS: Urinary incontinence severity decreased between pre-test and post-test in both groups. There was a statistically significant difference of the impact of urinary incontinence on quality of life between the groups at post-test in the domain "severity measures" (p = 0.013), and only in the intervention group between pre-test and post-test in the domains "emotions" (p < 0.001) and "sleep and mood" (p = 0.008). The intervention group was 20.8% (p = 0.007) and 25.3% (p = 0.002) less likely to present nocturia and urinary urgency, respectively. CONCLUSIONS: Auricular acupuncture combined with pelvic floor muscle training was more effective, compared to pelvic floor muscle training alone, in reducing the impact of urinary incontinence on quality of life and reducing the odds of nocturia and urinary urgency.

Healing profiles in patients with a chronic diabetic foot ulcer: An exploratory study with machine learning.

Diabetic foot ulcers (DFU) are one of the most frequent and debilitating complications of diabetes. DFU wound healing is a highly complex process, resulting in significant medical, economic and social challenges. Therefore, early identification of patients with a high-risk profile would be important to adequate treatment and more successful health outcomes. This study explores risk assessment profiles for DFU healing and healing prognosis, using machine learning predictive approaches and decision tree algorithms. Patients were evaluated at baseline (T0; N = 158) and 2 months later (T1; N = 108) on sociodemographic, clinical, biochemical and psychological variables. The performance evaluation of the models comprised F1-score, accuracy, precision and recall. Only profiles with F1-score >0.7 were selected for analysis. According to the two profiles generated for DFU healing, the most important predictive factors were illness representations on T1 IPQ-B (IPQ-B ≤ 9.5 and < 10.5) and the DFU duration (≤ 13 weeks). The two predictive models for DFU healing prognosis suggest that biochemical factors are the best predictors of a favorable healing prognosis, namely IL-6, microRNA-146a-5p and PECAM-1 at T0 and angiopoietin-2 at T1. Illness perception at T0 (IPQ-B ≤ 39.5) also emerged as a relevant predictor for healing prognosis. The results emphasize the importance of DFU duration, illness perception and biochemical markers as predictors of  healing in chronic DFUs. Future research is needed to confirm and test the obtained predictive models.

Quality of life in heterosexual menopausal women: The indirect effect of sexual and marital satisfaction, menopause representations, and psychological morbidity.

Menopause may negatively impact Quality of Life (QoL). Our study used a cross-sectional design and research participants were 99 women in natural menopause. In our study, we analyzed the relationship between age at menopause onset, hormone therapy use, duration of couple relationship, menopause duration, psychological morbidity, marital satisfaction, menopause representations, and QoL following the Wilson and Cleary Health-Related QoL conceptual model. The authors found that negative representations, lower marital satisfaction, psychological morbidity, and shorter duration of menopause contributed to lower QoL. Moreover, the authors found that psychological morbidity and menopause representations (identity and control/cure dimensions) had an indirect effect between marital satisfaction and vasomotor, psychosocial, and sexual QoL. Also, we found that age at the onset of menopause showed a moderating effect in the final model. Future studies should replicate these results in a longitudinal design and analyze how the variables that showed a moderating role and indirect effects will function as moderators and mediators, respectively, over time.

Impact of Psychological Distress on Physiological Indicators of Healing Prognosis in Patients with Chronic Diabetic Foot Ulcers: A Longitudinal Study.

Objective: Diabetic foot ulcers (DFUs) are devastating complications of diabetes, responsible for a high number of amputations worldwide. Due to its impact on chronic inflammation, psychological distress may negatively impact the healing process. Thus, this study evaluated the influence of psychological distress on physiological indicators of healing prognosis and the potential of stress-reducing therapies for DFU healing. Approach: Patients with chronic DFU were recruited and assessed at enrollment and 2 months later. According to psychological scores at enrollment, participants were allocated into groups without (group 1) or with (group 3) psychological distress. Participants who reported clinical distress were then randomly allocated into a control (no stress-reducing intervention-group 4) or experimental (with stress-reducing interventions-group 5) group. Subsequently, indicators of healing prognosis were measured. Results: Groups 1 and 3 presented no differences in the Perfusion, Extent, Depth, Infection and Sensation score, glycated hemoglobin, or inflammatory and angiogenic markers. However, the immune cell ratio was increased by more than twofold in group 3, compared with group 1. Importantly, the expression of circulating microRNAs was significantly increased in group 3 (miR-21-5p, miR-155-5p, miR-146a-5p, and miR-221-3p [p < 0.05]), compared with group 1. Two months later, group 5 displayed a significant improvement in the Perceived Stress Scale and Hospital Anxiety and Depression Scale scores (p < 0.01), and the immune cell ratio was decreased by more than 2.5-fold. Innovation: This study helped to identify which variables and psychological interventions are more successful in promoting DFU healing. Conclusion: Psychological distress influenced clinical and physiological parameters, leading to compromised DFU healing and consequently underlining the potential of adjuvant stress-reducing approaches.

Metabolic control and quality of life in type 1 diabetes: Do adherence, family support, and school support matter?

This study analyzed the relationship between clinical and demographic variables, family support, school support, and adherence on adolescents' metabolic control and quality of life (QoL) based on Adaptation to Chronic Disease in Childhood's model. The sample included 100 adolescents and 100 parents. Adolescents were assessed on adherence, family support, school support, and QoL. Parents were assessed on family functioning and parental coping. A path analysis was performed to assess the adequacy of the theoretical model to the sample. Daily glycemic monitoring was associated with better metabolic control and diabetes hospitalizations with worse metabolic control. The final model showed adherence, family support, school support, and family functioning having an indirect effect on the relationship between adolescence stage, number of daily glycemic monitorings, number of hospitalizations, and metabolic control/QoL. Adherence had an indirect effect on the relationship between glycemic monitoring and family and school support, suggesting that adolescents need both types of support to perform diabetes self-care tasks. QoL showed a direct effect on metabolic control revealing the importance of QoL in the design of interventions to promote metabolic control in adolescents.

Educational Interventions on Diabetic Foot Self-Care: A Study Protocol for a Pragmatic Randomized Controlled Trial.

Diabetic foot is one of the most serious complications of diabetes and foot ulcer recurrence has been associated with poor foot care. Educational programs may work as a vehicle for promoting knowledge and adequate foot self-care behaviors, reducing potential ulcerative complications in the diabetic foot, and promoting a better quality of life. This study protocol will analyze the impact of two different educational strategies - an instructive video (Experimental Group 1) compared to a foot care leaflet with real-time guided reading (Experimental Group 2) and standard care (Control Group) - on adherence and knowledge about diabetic foot care and patients' perception of their foot health. This study is a Pragmatic Randomized Controlled Trial of a non-pharmacological treatment. Participants need to have a diabetic foot diagnosis and attend a Diabetic Foot Multidisciplinary Consultation at two hospitals from the North of Portugal. Participants will be assessed at the first appointment of the diabetic foot consultation (T0), two weeks after (T1), and three months later, at follow-up (T2). Primary outcomes will be adherence and knowledge about diabetic foot care and general foot health. Secondary outcomes will be illness representations regarding diabetic foot. The results of this study will inform educational interventions to decrease diabetic foot ulcers, amputation rates, and the costs associated with both, contributing to foot care adherence and improve patient's quality of life.

Relax to Heal? Perspectives of Patients with Diabetic Foot Ulcers and Health Professionals on Relaxation Sessions for Wound Healing.

OBJECTIVE: To explore patients' and healthcare professionals' (HPs') perspectives on the suitability/acceptability of a relaxation intervention, its effects on patients' well-being and diabetic foot ulcer (DFU) healing, and its incorporation into the multidisciplinary management of patients with diabetic foot. METHODS: This qualitative study was nested within a three-arm pilot randomized controlled trial. Patients with a chronic DFU received four relaxation sessions. Investigators then interviewed patients, physicians, and nurses involved with diabetic foot consultations. Interviews were audio-recorded, transcribed, and analyzed using thematic content analysis. RESULTS: Five themes emerged from patient's interviews about the suitability/acceptability of the relaxation intervention: perceptions regarding the psychological intervention, distress, the relaxation technique, changes in the patient's life, and changes in DFU/contribution to healing. Three themes emerged from interviews with HPs: perceptions regarding relaxation, changes in the patient, and changes in DFU/healing. Regarding the feasibility of the relaxation intervention, three themes emerged for both patients and HPs: suggested modifications, stressors/difficulties, and impact of COVID-19 pandemic. The utility theme emerged only in HP interviews, with subthemes of patients' distress, psychological interventions, relaxation intervention, and integration of the psychologist in the team. CONCLUSIONS: These findings provide evidence for the suitability/acceptability, feasibility, and utility of a relaxation intervention in diabetic foot consultations.

Relaxation intervention to improve diabetic foot ulcer healing: Results from a pilot randomized controlled study.

This pilot randomised controlled study (RCT) aimed to assess the feasibility and acceptability of a progressive muscle relaxation with guided imagery intervention (experimental group [EG]) compared to a neutral guided imagery placebo (active control group [ACG]) and standard care to diabetic foot ulcer [DFU] treatment (passive control group [PCG]), to decide on the need for a definitive RCT. Diabetic foot patients with one or two chronic DFU and significant levels of stress/anxiety/depression were recruited and assessed during a period of 6 months, at three moments. Primary outcomes: feasibility rates and satisfaction with relaxation sessions. Secondary outcomes: DFU healing score, DFU-related quality of life (DFUQoL), physical and mental HRQoL, stress and emotional distress, DFU representations, arterial blood pressure, and heart rate. A total of 146 patients completed the baseline (T0) assessment with 54 participants presenting significant distress being randomised into three groups. Patients were assessed 2 months post-intervention (T1) and 4 months after T1 (T2). Feasibility rates showed reduced values on eligibility, recruitment and inclusion in the study, although with an acceptable rate of refusal lower than 10%. On average, participants reported being satisfied with relaxation sessions and recommended them to other patients. Differences between groups showed that, at T1, PCG participants reported higher levels of stress than those from EG and ACG. Within-group differences showed improvements in stress, distress, DFUQoL and DFU extent over time only in EG and ACG. Only EG showed significant changes in DFU representations at T1. The results suggest that relaxation may be a promising coping strategy to deal with DFU distress and an important adjuvant therapy for DFU healing, supporting the implementation of a definitive RCT.

The Moderating Role of Self-Care Behaviors in Personal Care Aides of Older Adults during the COVID-19 Pandemic.

The COVID-19 pandemic has brought new challenges and work changes for formal caregivers such as personal care aides with an impact on their quality of life (QoL). This cross-sectional study aims to analyze the relationships and contribution of sociodemographic and psychological variables towards QoL including the moderating role of self-care. This study included 127 formal caregivers from Portugal who were assessed on depression, anxiety and stress (DASS-21); professional self-care (SCAP); quality of life (SF-12); COVID-19 traumatic stress (COVID-19TSC) and preventive COVID-19 infection behaviors (PCOVID-19 IBS). Professional self-care was positively associated with QoL and also moderated the relationship between distress and QoL (p < 0.001). According to results, nursing homes should provide formal caregivers, such as personal care aides, with the professional support they need in order to promote their QoL and prevent burnout.

Family Functioning in a Portuguese Sample of Adults during COVID-19: Does Hope Matter? / Funcionamiento familiar en una muestra portuguesa de adultos durante el COVID-19: ¿importa la esperanza?

The purpose of this study was to explore the relationships between sociodemographic, clinical, and psychological variables and their contribution towards family functioning during the first wave of COVID-19 in Portugal. The COVID-19 pandemic was an overwhelming and stressful life event with social consequences that impacted family functioning and contributed to multilevel disruptions. The study used a cross-sectional design and included 110 participants (94 women), with a mean age of 35.71 (SD = 13.53). Participants answered self-report measures assessing family satisfaction, hope, psychological well-being, risk perception, and family functioning. Hope (pathways subscale) played a moderating role in the relationship between family satisfaction and family functioning. Family satisfaction and psychological well-being partially mediated the relationship between hope and family functioning. Clinical relevance and implications for further research are addressed. Intervention should focus on increasing psychological well-being and hope together with family satisfaction in order to promote family functioning. For those individuals struggling with COVID-19 issues, mental health interventions are paramount. (AU)

Este estudio ha tenido como objetivo explorar la relación entre las variables sociodemográficas, clínicas y psicológicas y el funcionamiento familiar en la primera oleada de COVID-19 en Portugal. La pandemia de COVID-19 fue una situación de vida abrumadora y estresante con consecuencias sociales que afectaron en el funcionamiento familiar. El estudio utilizó un diseño transversal e incluyó 110 participantes (94 mujeres), con una edad media de 35.71 años (SD = 13.53). Los participantes respondieron a medidas que evaluaban la satisfacción familiar, la esperanza, el bienestar psicológico, la percepción del riesgo y el funcionamiento familiar. La esperanza (subescala “caminos”) desempeñó un papel moderador en la relación entre la satisfacción familiar y el funcionamiento familiar. La satisfacción familiar y el bienestar psicológico mediaron parcialmente en la relación entre la esperanza y el funcionamiento familiar. Se abordan la importancia clínica y las implicaciones para futuras investigaciones. La intervención deberá centrarse en aumentar el bienestar psicológico y la esperanza junto con la satisfacción familiar para promover el funcionamiento familiar. Para los individuos que luchan con problemas de COVID-19 son primordiales las intervenciones de salud mental. (AU)

Stress reduction interventions for patients with chronic diabetic foot ulcers: a qualitative study into patients and caregivers' perceptions.

BACKGROUND: The present study aimed to assess the perceptions of patients with chronic diabetic foot ulcers (DFUs) and their family caregivers regarding the impact of two stress reduction interventions on DFU and psychological wellbeing. The intervention included progressive muscle relaxation and hypnosis sessions. METHODS: This study used a qualitative exploratory design and included individual interviews with eight patients with chronic DFUs and six family caregivers, using a semi-structured interview guide. Transcript analysis employed thematic content analysis. RESULTS: Four key themes common to patients and their caregivers were found: 1) perspectives regarding the intervention; 2) intervention effectiveness; 3) perceived importance of psychology in the DFU treatment; and 4) emotional consequences associated with DFUs. Although themes were common to both intervention groups, sub-themes from the last two themes differed for patients that received muscle relaxation versus those who received hypnosis. CONCLUSION: Patients and caregivers reported perceived benefits from both interventions, regarding DFU healing and emotional wellbeing. Patients who received hypnosis and their caregivers also reported lasting effects. Participants suggested that psychological interventions such as stress reduction interventions could be included in the DFU standard treatment as an adjuvant to the clinical protocol for DFU treatment, preferably offered early on, when patients begin treatment at the diabetic foot consultation.

Quality of Life in Amazonian Women during Cervical Cancer Treatment: The Moderating Role of Spirituality.

This study aimed to examine the contribution of psychological variables to quality of life (QoL) of Amazonian women and to analyze the moderating role of spirituality in the relationship between psychological morbidity and Qol and between illness perception and QoL. This cross-sectional study included 119 women undergoing treatment for cervical cancer (CC). The Pearson correlation test was used to evaluate the relationship between sociodemographic, clinical, and psychological variables. To test how psychological morbidity, illness perception, and spirituality contribute to QoL, a path analysis was performed and to test the moreating role of spirituality, a moderation analysis was conducted. The results revealed that the presence of symptoms, high psychological morbidity, negative body image, and threatening illness perception were predictors of lower QoL. Spirituality moderated the relationship between psychological morbidity and QoL, and between illness perception and QoL. The moderating role of spirituality emphasizes its role as a coping strategy and should be included in cancer treatment. Interventions should target psychological morbidity, threatening illness perception, and address women's concerns with body image and sexual concerns. CC treatment should include interprofessional healthcare teams addressing the biological and psychosocial factors of Amazonian women. As a result of this study a mobile application to monitor women's health, adapted to cultural and social characteristics, was created.

Predictors and Moderators of Quality of Life in Male Users of Anti-Aging Products.

For most individuals, changes occurring during the aging process may cause dissatisfaction and concerns regarding body image, with implications on quality of life (QoL). The aim of this study was to assess the contribution of sociodemographic and psychological variables and the type of anti-aging products/treatments on men's QoL, as well as to evaluate the moderating role of aging perceptions in the relationship between psychological morbidity and QoL. This study used a cross-sectional design and included a sample of 111 male participants who used anti-aging cosmetic products/aesthetic treatments. Participants were assessed on body image, self-esteem, psychological morbidity, aging perceptions, traits of perfectionism, and QoL. Results suggested that psychological morbidity and perceptions of the aging process as chronic negatively contributed to QoL, and emotional representations of aging moderated the relationship between psychological morbidity and QoL. According to the findings, psychological intervention programs to improve QoL should focus on men with higher levels of psychological morbidity and more negative emotional responses to the aging process.

Diabetes representations on adherence and quality of life: Do parents and adolescents differ?

Type 1 diabetes is one of the most frequent chronic diseases in adolescents. To manage diabetes and prevent complications, a set of self-care behaviors needs to be implemented into family daily routines. This study analyzed diabetes representations in adolescents and their parents, the dissimilarities between them, and the relationship between illness dissimilarities and adherence/quality of life (QoL) in adolescents with type 1 diabetes. The sample included 200 participants: 100 adolescents with type 1 diabetes and 100 parents who accompanied the adolescents. Adolescents were assessed on adherence (Self-Care Inventory-Revised), quality of life (Diabetes QoL) and family support (Diabetes Family Behavior Scale). Both adolescents and parents were assessed on illness representations (Brief-Illness Perception Questionnaire). Dissimilarities in illness representations between parents and adolescents were performed using Olsen et al's proposal. Parents showed a more negative representation of diabetes than adolescents. Adolescents' illness representations, the dissimilarities between adolescents' and parents' illness representations, and family support were associated with adolescents' adherence and QoL. Higher family support moderated the relationship between the dissimilarity in timeline representations and QoL, explaining 17.8% of the variance on QoL. Adolescent's  gender (male) was a moderator in the relationship between adolescent's coherence and QoL, explaining 18.6% of the variance on QoL. Adolescent's gender (female) was a moderator in the relationship between timeline and QoL, explaining 11.9% of the variance on QoL. Being a male parent was a moderator in the relationship between adolescent's concerns and QoL, explaining 13.5% of the variance on QoL. Intervention programs should focus on illness representations, particularly on the dissimilarities between adolescents and parents, as well as on family support in order to promote adolescents' adherence and QoL.