Your browser doesn't support javascript.
loading
Mostrar: 20 | 50 | 100
Resultados 1 - 20 de 25
Filtrar
Mais filtros

Base de dados
País/Região como assunto
Tipo de documento
País de afiliação
Intervalo de ano de publicação
1.
Psychooncology ; 32(3): 393-400, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36583445

RESUMO

BACKGROUND AND AIMS: A chronic feeling of fatigue occurs in up to 85% of childhood cancer survivors (CCS). This phenomenon has a detrimental effect on quality of life, reintegration in daily life activities and psychosocial functioning of the patient. Therefore, it is important to elucidate potential individual risk and protective factors. METHODS: CCS who were treated in the University Hospital of Leuven, completed two annual questionnaires on cancer-related distress (fear of cancer recurrence and post-traumatic stress, resilience and fatigue). Associations between distress and fatigue levels were examined by performing cross-lagged panel analyses. Resilience was included as a potential moderator. These models included all within-time associations, stability paths, and cross-lagged paths. Gender and time since diagnosis were included as covariates. RESULTS: In total, 110 CCS participated in this study, aged 14-25 years (average time since diagnosis 12.2 years; 41.8% boys; diagnosed with leukemia/lymphoma [49%], solid tumor [15%], brain tumor [16%] or other [20%]). Fear of cancer recurrence and post-traumatic stress at baseline positively predicted fatigue 1 year later. Cross-lagged panel analyses showed that resilience did not buffer the effect of fear of cancer recurrence on fatigue, in contrary to our expectations. Stability coefficients were high for all study variables. CONCLUSION: This study indicates associations between cancer-related distress (fear of cancer recurrence and post-traumatic stress), resilience and cancer-related fatigue over time in CCS. Interventions to improve fatigue levels could be focusing on both tackling cancer-related distress, while improving resilience levels as well.


Assuntos
Neoplasias Encefálicas , Sobreviventes de Câncer , Neoplasias , Masculino , Humanos , Criança , Feminino , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Estudos Longitudinais , Recidiva , Fadiga/psicologia
2.
Ann Behav Med ; 57(9): 722-732, 2023 08 21.
Artigo em Inglês | MEDLINE | ID: mdl-37036114

RESUMO

BACKGROUND: Adolescent and emerging adult survivors of childhood cancer generally adjust well psychologically similar to their peers. Nevertheless, some survivors are at greater risk for developing psychological and physical difficulties. To shed light on the psychosocial functioning of adolescent and emerging adult survivors of childhood cancer, personal identity formation and its interplay with general and cancer-specific functioning need to be investigated. PURPOSE: To examine the longitudinal associations linking identity formation to general and cancer-specific functioning in adolescent and emerging adult childhood cancer survivors using three-wave data over a 2-year period. METHODS: Dutch-speaking survivors (at baseline: n = 125; 53% female; age range: 14-25 years) treated at the pediatric oncology department of the University Hospitals Leuven (Belgium), completed self-report questionnaires at three annual timepoints. Directionality of effects and correlated changes were examined using cross-lagged structural equation modeling. RESULTS: Regarding general functioning, bidirectional effects occurred. Life satisfaction positively predicted identity synthesis and both life satisfaction and good physical functioning negatively predicted identity confusion over time. Identity synthesis, in turn, positively predicted life satisfaction and identity confusion negatively predicted good physical functioning over time. Regarding cancer-specific functioning, mainly unidirectional effects occurred. Post-traumatic stress symptoms negatively predicted identity synthesis and positively predicted identity confusion over time, whereas the reverse pattern of associations was found for benefit finding. Several correlated changes were found linking identity formation and psychosocial functioning as well. CONCLUSIONS: The present study uncovered clinically meaningful pathways linking identity formation to psychosocial functioning over time in adolescents and emerging adults who survived childhood cancer.


To shed light on the psychosocial functioning of adolescent and emerging adult survivors of childhood cancer, personal identity formation and its longitudinal interplay with general and cancer-specific functioning need to be investigated. Dutch-speaking survivors treated at the pediatric oncology department of the University Hospitals Leuven (Belgium), completed self-report questionnaires at three annual timepoints, resulting in three-wave data over a 2-year period. Regarding identity formation and general functioning, bidirectional effects occurred. Life satisfaction positively predicted identity synthesis and both life satisfaction and good physical functioning negatively predicted identity confusion over time. Identity synthesis, in turn, positively predicted life satisfaction and identity confusion negatively predicted good physical functioning over time. Regarding identity formation and cancer-specific functioning, mainly unidirectional effects occurred. Post-traumatic stress symptoms negatively predicted identity synthesis and positively predicted identity confusion over time, whereas the reverse pattern of associations was found for benefit finding. The present study uncovered meaningful pathways linking identity formation to psychosocial functioning over time in adolescents and emerging adults who survived childhood cancer. These longitudinal findings may provide important guidance for clinical practice, given that identity formation in today's western society has become particularly challenging.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Adulto , Adolescente , Feminino , Criança , Adulto Jovem , Masculino , Neoplasias/psicologia , Estudos Longitudinais , Grupo Associado , Sobreviventes/psicologia , Qualidade de Vida/psicologia
3.
J Behav Med ; 46(6): 1032-1041, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37450207

RESUMO

The premise of this study was to gain more insight into whether type 1 diabetes (T1D) can impact how youth perceive parents and peers. To address limitations of previous observational studies comparing youth with T1D to control youth, propensity weighting was used to mimic a randomized controlled trial. A total of 558 youth with T1D and 426 control youth (14-26y) completed questionnaires on parental responsiveness, psychological control, overprotection, friend support, extreme peer orientation, and a host of background and psychological functioning variables. The groups were statistically weighted to become as comparable as possible except for disease status. The analysis plan and hypotheses were preregistered on the open science framework. Youth with T1D perceived their mothers to be more overprotective, perceived fewer friend support, and were less extremely oriented toward peers than control youth. There were no group differences for paternal overprotection and paternal and maternal responsiveness and psychological control. Mothers of youth with T1D seem at risk to practice overprotective parenting and clinicians could play an important role in making mothers aware of this risk. However, the absence of group differences for the maladaptive parenting dimension of psychological control and adaptive dimension of responsiveness are reassuring and testify to the resilient nature of youth with T1D and their families. Additionally, there is accumulating evidence that T1D could interfere with engaging in supportive friendships.

4.
J Pediatr Psychol ; 47(6): 641-651, 2022 06 07.
Artigo em Inglês | MEDLINE | ID: mdl-34918083

RESUMO

OBJECTIVE: The interplay and longitudinal associations between positive and negative illness-related experiences in childhood cancer survivors and their families remain unclear. Therefore, benefit finding, cancer-related worries, depressive symptoms, and life satisfaction were prospectively investigated in childhood cancer survivors and parents. Directionality of effects and interactions between benefit finding and cancer-related worries in predicting general well-being were examined. METHODS: Childhood cancer survivors (n = 125 at T1; aged 14-25), mothers (n = 133 at T1), and fathers (n = 91 at T1) completed two annual questionnaires on benefit finding, cancer-related worries, depressive symptoms, and life satisfaction. Cross-lagged panel analyses including benefit finding, cancer-related worries, their interaction, and depressive symptoms or life satisfaction were conducted in survivors, mothers, and fathers. RESULTS: Relatively high stability coefficients were found for all study variables. In survivors, cancer-related worries predicted relative increases in depressive symptoms and benefit finding over time. Benefit finding predicted relative increases in life satisfaction over time and buffered negative effects of cancer-related worries on life satisfaction. In mothers and fathers, positive correlated change at T2 (the correlation between residuals at T2) indicated that relative change in benefit finding over time was positively related to relative change in cancer-related worries. CONCLUSION: Benefit finding was related both to positive well-being and negative illness experiences, which calls for more research to unravel the different functions of benefit finding over time. Clinicians should be encouraged to attend to positive illness experiences along with more negative ones to obtain a more nuanced view on the illness experiences of survivors and their families.


Assuntos
Sobreviventes de Câncer , Neoplasias , Ansiedade , Feminino , Humanos , Estudos Longitudinais , Neoplasias/terapia , Pais , Inquéritos e Questionários , Sobreviventes
5.
J Behav Med ; 44(3): 402-411, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33677767

RESUMO

Youth with type 1 diabetes (T1D) must adhere to a complex treatment regimen to prevent health complications. Friends may provide diabetes-specific support to help youth manage diabetes, but evidence on whether youth benefit from diabetes-specific friend support is inconclusive. The present study first investigated whether satisfaction with friend support was linked to psychological distress and diabetes management. Second, it was investigated whether self-esteem mediated these relations. To this end, 324 Dutch-speaking emerging adults (17-28 years) with T1D completed questionnaires on diabetes-specific friend support, self-esteem, diabetes-specific distress, depressive symptoms, and self-care. HbA1c values were obtained from patients' physicians. Receiving diabetes-specific support from friends was associated with more diabetes-specific distress, but not for youth who were satisfied with the received support. Diabetes-specific friend support was not associated with other outcomes. Self-esteem did not mediate these relations. These results suggest that associations between diabetes-specific friend support and diabetes management are limited and that support satisfaction should be taken into consideration when examining the role of friend support for youth with T1D.


Assuntos
Diabetes Mellitus Tipo 1 , Amigos , Adolescente , Adulto , Diabetes Mellitus Tipo 1/terapia , Humanos , Satisfação Pessoal , Autocuidado , Autoimagem
6.
Ann Behav Med ; 54(11): 893-903, 2020 11 01.
Artigo em Inglês | MEDLINE | ID: mdl-32329794

RESUMO

BACKGROUND: Despite clear evidence that peers are crucial for youth development, research on the role of peers for youth with Type 1 diabetes (T1D) is scarce. PURPOSE: The present study identified trajectory classes of perceived peer functioning in youth with T1D, based on peer support and extreme peer orientation (EPO). Further, classes were compared with respect to their trajectories of depressive symptoms, diabetes-specific distress, treatment adherence, and HbA1c values. METHODS: Five hundred and fifty-nine youth (14-25 years) with T1D completed questionnaires at baseline, 1, 2, and 3 years later. Latent class growth analysis identified classes of perceived peer functioning. Multigroup latent growth curve modelling assessed whether these classes were characterized by different trajectories of general and diabetes-specific functioning. RESULTS: A socially normative class (48%) was characterized by trajectories of high support and low EPO over time. A socially reserved class (29%) was characterized by low support and EPO, and a socially oriented class (17%) by high support and EPO. Finally, a socially vulnerable class (6%) was characterized by low support and high EPO. The normative class functioned significantly better over time than the other classes. The vulnerable class functioned significantly worse compared to the reserved class, despite experiencing equally low levels of support. CONCLUSIONS: The results underscore the need to take youths' orientation toward the peer context into account alongside support when tapping into the role of peers, because individuals with low levels of support and EPO functioned substantially better than individuals with similar low levels of support but high levels of EPO.


Assuntos
Diabetes Mellitus Tipo 1/psicologia , Análise de Classes Latentes , Grupo Associado , Apoio Social , Adolescente , Adulto , Depressão , Feminino , Controle Glicêmico/estatística & dados numéricos , Humanos , Estudos Longitudinais , Masculino , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , Adulto Jovem
7.
Pediatr Diabetes ; 21(5): 890-899, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32315507

RESUMO

OBJECTIVE: Type 1 diabetes in youth has a wide-ranging impact on families. This study aimed at a better understanding of experiences and difficulties that parents may encounter in their lives. Parental illness intrusiveness (ie, a parent's perception that the illness of one's child interferes with one's personal life) was prospectively examined in mothers and fathers. METHODS: Parental dyads (n = 291) completed four annual questionnaires on parental illness intrusiveness, depressive symptoms, and treatment adherence of their child. Youth reported on their treatment adherence. RESULTS: First, cross-lagged models showed that mothers' illness intrusiveness predicted relative increases in both mothers' and fathers' illness intrusiveness over time. Similar effects were found for fathers. Second, paired-samplest tests revealed higher illness intrusiveness in mothers at baseline. Latent growth curve modeling showed that mothers' illness intrusiveness generally decreased over time, while fathers' illness intrusiveness remained constant. Third, from a person-centered approach, multivariate latent class growth analysis identified three classes of parental couples: one with low and decreasing illness intrusiveness (54%), one with slightly elevated illness intrusiveness that remained stable over time (37%), and one with high illness intrusiveness that decreased in mothers but remained stable in fathers (9%). More parental depressive symptoms were reported in this latter class, while treatment adherence did not differ among the classes. CONCLUSIONS: Most parents in this sample reported rather low illness intrusiveness over time, yet some experienced a major impact of the illness. Examining parental illness intrusiveness may provide a better understanding of the specific challenges parents are confronted with.


Assuntos
Efeitos Psicossociais da Doença , Diabetes Mellitus Tipo 1/psicologia , Pais/psicologia , Adolescente , Adulto , Atitude Frente a Saúde , Criança , Pré-Escolar , Depressão/epidemiologia , Depressão/etiologia , Depressão/psicologia , Diabetes Mellitus Tipo 1/epidemiologia , Pai/psicologia , Pai/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Mães/psicologia , Mães/estatística & dados numéricos , Relações Pais-Filho , Percepção , Inquéritos e Questionários , Cooperação e Adesão ao Tratamento/psicologia , Cooperação e Adesão ao Tratamento/estatística & dados numéricos
8.
J Youth Adolesc ; 49(2): 449-466, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31853683

RESUMO

Youth with type 1 diabetes are confronted with the challenging task of integrating diabetes into their identity. This integration process, referred to as illness identity, may play an important role in how youth with type 1 diabetes cope with normative and illness-specific challenges. In line with socio-ecological theorizing, the present study investigated the longitudinal interplay between illness identity and two important social contexts for youth, the parent and peer contexts. A total of 559 (54.5% female; mean age = 18.8 years) adolescents (14-17 years) and emerging adults (18-25 years) with type 1 diabetes completed questionnaires at three time-points with intervals of one year. A total of 98% of these participants had the Belgian nationality, and all of them spoke Dutch. At each time point, illness identity (i.e., acceptance, enrichment, rejection, and engulfment), peer support, extreme peer orientation, parental responsiveness, parental psychological control, and parental overprotection were self-assessed. The present findings show that overprotective parenting may lead to youth feeling engulfed by their diabetes. Further, when type 1 diabetes becomes adaptively integrated into youth's identity, the data suggest that youth may be better prepared to engage in healthy peer relationships. Thus, the present findings show that illness identity may be affected by the social context, and in turn may have an impact on parent and peer relationships as well. In general, the present findings underscore the importance of adaptive illness integration for youth with type 1 diabetes, and further emphasize the importance of achieving a coherent identity.


Assuntos
Ansiedade/psicologia , Diabetes Mellitus Tipo 1/psicologia , Relações Pais-Filho , Grupo Associado , Autoimagem , Adolescente , Feminino , Humanos , Relações Interpessoais , Estudos Longitudinais , Masculino , Meio Social , Inquéritos e Questionários , Adulto Jovem
9.
J Pediatr Psychol ; 42(9): 922-932, 2017 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-28369579

RESUMO

Objective: To examine the role of diabetes-specific parental regulation and general parenting dimensions (responsiveness and psychological control) in treatment adherence throughout adolescence and emerging adulthood. Methods: A total of 521 patients (aged 14-25 years) with Type 1 diabetes, 407 mothers, and 345 fathers were included. Analyses within and across informants examined the associations between the parenting variables and treatment adherence (and potential moderation effects in these associations). Results: Lower psychological control and higher parental responsiveness were associated with better treatment adherence. Diabetes-specific parental regulation was not linked to treatment adherence, except when combined with high levels of responsiveness. Some effects of psychological control and responsiveness were more pronounced in the older age-group. Conclusions: Researchers and clinicians should remain attentive to the potential role of parenting for treatment adherence, even in emerging adult patients.


Assuntos
Comportamento do Adolescente/psicologia , Diabetes Mellitus Tipo 1/psicologia , Poder Familiar , Pais/psicologia , Cooperação e Adesão ao Tratamento/psicologia , Adolescente , Adulto , Bélgica , Automonitorização da Glicemia , Estudos Transversais , Diabetes Mellitus Tipo 1/tratamento farmacológico , Diabetes Mellitus Tipo 1/metabolismo , Feminino , Hemoglobinas Glicadas/metabolismo , Humanos , Masculino , Relações Pais-Filho , Poder Familiar/psicologia , Pais/educação , Meio Social , Apoio Social , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , Adulto Jovem
10.
J Adolesc ; 49: 47-50, 2016 06.
Artigo em Inglês | MEDLINE | ID: mdl-26999440

RESUMO

Identity formation constitutes a core developmental task during adolescence, but may be challenged when having a chronic illness such as type 1 diabetes. The present study examined whether viewing positive benefits to one's diabetes across adolescence was related to greater identity exploration and commitment later in time. A total of 55 adolescents (10-14 years; 47% female) with type 1 diabetes participated in a six-wave study spanning 3 years (with six-month measurement intervals). Through latent growth curve modeling, Time 6 identity scores were regressed on intercept and slope terms of benefit finding through Times 1-4, simultaneously controlling for demographic and clinical variables. Identity exploration (but not commitment) at Time 6 was positively predicted by the intercept and slope of benefit finding: adolescents who find benefits in diabetes are more inclined to explore different alternatives later on in adolescence. Benefit finding may constitute a resource facilitating identity formation in adolescents with diabetes.


Assuntos
Desenvolvimento do Adolescente , Diabetes Mellitus Tipo 1/psicologia , Autoimagem , Adolescente , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Estudos Prospectivos
11.
Artigo em Inglês | MEDLINE | ID: mdl-38963773

RESUMO

Purpose: This study examines nonsuicidal self-injury (NSSI) in adolescent and emerging adult survivors of childhood cancer, aiming to gain a first understanding of the phenomenon, its relation to general and cancer-specific functioning, and the stability of NSSI engagement over time. Methods: Dutch-speaking survivors (n = 125, age range = 14-25 years) participated in the first three annual waves of the Longitudinal Identity Study of Childhood Cancer Survivors study. Descriptive characteristics of lifetime NSSI were calculated. Multivariate analysis of variance (MANOVA) and χ2-analyses were performed to examine differences in demographic and clinical characteristics between survivors with and without lifetime NSSI. To assess differences in general and cancer-specific functioning between survivors with and without lifetime NSSI, two MANOVA analyses were performed. Finally, prevalence rates of current NSSI across the three waves were calculated, followed by χ2-analyses to explore differences in current NSSI over time. Results: The prevalence and characteristics of lifetime NSSI engagement resembled those in the general population. Although demographic and clinical characteristics were unrelated to NSSI engagement, several meaningful differences were found in both general and cancer-specific functioning between survivors with and without NSSI. Survivors with lifetime NSSI experienced more depressive symptoms and difficulties with identity formation (i.e., lower levels of identity synthesis and higher levels of identity confusion). In addition, they experienced more post-traumatic stress symptoms and cancer-related worries, and identified less as a "cancer patient." Conclusions: This study provides a first understanding of NSSI engagement in survivors of childhood cancer, mapping the characteristics of NSSI and its associations with both general and cancer-specific functioning.

12.
Health Psychol ; 43(5): 328-338, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38252095

RESUMO

OBJECTIVE: Having Type 1 diabetes (T1D) may complicate the normative developmental task of personal identity formation in adolescence and emerging adulthood. Besides exploring and committing to identity choices in different life domains, youth with T1D need to integrate their illness into their identity, a process labeled as illness identity. The present study examined whether youth with T1D belonging to different personal identity trajectory classes developed differently on four illness identity dimensions (acceptance, enrichment, engulfment, rejection). METHOD: This four-wave longitudinal study over a 3-year period used self-report questionnaires to examine how personal identity trajectory classes were related to illness identity over time in youth with T1D (baseline: n = 558; 54% female; age range = 14-25 years). Personal identity trajectory classes were identified using latent class growth analysis. Differential development of the four illness identity dimensions among these personal identity trajectory classes was examined using multigroup latent growth curve modeling. RESULTS: Five personal identity trajectory classes were identified: achievement, foreclosure, moratorium, carefree diffusion, and troubled diffusion. Individuals in achievement and foreclosure displayed highest levels of diabetes integration (i.e., high levels of acceptance and enrichment; low levels of engulfment and rejection), whereas individuals in troubled diffusion displayed lowest levels of illness integration (i.e., low levels of acceptance and enrichment; high levels of engulfment and rejection). CONCLUSIONS: The present study confirms that personal identity development relates to illness identity development over time in youth with T1D. Understanding the intricate link between personal and illness identity may help clinicians to tailor their interventions to patients' individual needs. (PsycInfo Database Record (c) 2024 APA, all rights reserved).


Assuntos
Diabetes Mellitus Tipo 1 , Humanos , Adolescente , Feminino , Adulto , Adulto Jovem , Masculino , Diabetes Mellitus Tipo 1/psicologia , Estudos Longitudinais , Inquéritos e Questionários , Autorrelato
13.
Psychol Health ; 38(1): 55-72, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-34311645

RESUMO

OBJECTIVE: Identity formation was investigated in adolescent and emerging adult cancer survivors from a (neo-)Eriksonian perspective by comparing survivors to control participants. In survivors, associations between identity and clinical/demographical variables and general and illness-specific functioning were investigated. DESIGN: Childhood cancer survivors (n = 125; Mage: 19.54; 47% male) were matched on age and gender with healthy controls (2:1). MAIN OUTCOME MEASURES: All participants completed identity questionnaires. Survivors reported on demographics, well-being (depressive symptoms, life satisfaction, physical functioning), and illness-specific experiences (PTSS, illness centrality, cancer self-identity, benefit finding, cancer-related worries). Medical records provided clinical information. RESULTS: Survivors did not differ from controls on identity synthesis or confusion or on the identity statuses resulting from cluster analysis on the identity dimensions (achievement, foreclosure, moratorium, diffusion). Identity synthesis related to better well-being and illness experiences, whereas confusion related to worse well-being and illness experiences. Youth in moratorium and diffusion reported lower well-being and more negative illness experiences. Associations between identity and demographical and clinical characteristics were inconsistent. CONCLUSIONS: This study revealed no significant differences in identity formation between cancer survivors and controls. However, survivors who struggle in their identity quest should be identified as they are at risk for poorer well-being and negative illness experiences.


Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Adulto , Masculino , Adolescente , Criança , Feminino , Autoimagem , Funcionamento Psicossocial , Inquéritos e Questionários , Ansiedade
14.
Health Psychol ; 42(11): 767-777, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37603010

RESUMO

OBJECTIVE: The long-term psychological effects of childhood cancer vary, with childhood cancer survivors reporting depressive symptoms, fear of cancer recurrence, and benefit finding. As cancer is considered a family disease, investigating the parental context may provide insight into such individual differences in psychological functioning of survivors. This study examined the directionality of effects among parental sense of incompetence, parenting dimensions (responsiveness, psychological control, and overprotection), and survivor psychological functioning (depressive symptoms, fear of cancer recurrence, and benefit finding). METHOD: This three-wave longitudinal study (covering 2 years) included 125 Dutch-speaking childhood cancer survivors (ages 14-24, 95.2% diagnosed < 18 years, and time since diagnosis 2-22 years), 114 mothers, and 91 fathers. Survivors reported (SR) about their psychological functioning and perceived parenting. Mothers reported (MR) and fathers reported (FR) about parenting and sense of incompetence. Cross-lagged panel models were estimated for each informant's perspective on parenting separately. RESULTS: Different relations were obtained for each informant. Primarily unidirectional relations were found from parental sense of incompetence to maladaptive parenting (psychological control across informants and maternal overprotection SR) and from parenting to survivor functioning. Maternal and paternal responsiveness SR positively predicted survivors' benefit finding and negatively predicted survivors' depressive symptoms, respectively. Responsiveness MR and overprotection MR positively predicted survivors' fear of cancer recurrence and depressive symptoms, respectively. One consistent reverse pathway emerged: maternal and paternal responsiveness SR negatively predicted maternal and paternal sense of incompetence, respectively. CONCLUSION: The results support parent-driven processes impacting survivors' psychological functioning and stress the need to focus on multiple perspectives when investigating family dynamics. (PsycInfo Database Record (c) 2023 APA, all rights reserved).


Assuntos
Sobreviventes de Câncer , Neoplasias , Feminino , Humanos , Criança , Masculino , Estudos Longitudinais , Relações Pais-Filho , Neoplasias/psicologia , Pais/psicologia , Poder Familiar/psicologia , Mães , Pai
15.
Clin Child Psychol Psychiatry ; 28(3): 983-996, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-36112900

RESUMO

BACKGROUND: Neuromuscular disorders (NMD) are intrusive medical conditions with implications for psychosocial development. OBJECTIVES: This paper explores illness perceptions and illness identity dimensions of youth with NMD. First, we compare illness identity outcomes and illness perceptions of NMD patients with a comparison group of adolescents with type 1 diabetes mellitus (DM). Second, we report about the relationships between NMD-related variables and illness perceptions and illness identity. METHODS: Scores on the Brief Illness Perception Questionnaire and the Illness Identity Questionnaire were compared between a group of NMD patients (N = 59; 12-22 years) and an age- and gender-matched group of DM patients (N = 118). NMD-related variables included time since diagnosis, prognosis, wheelchair use, and physical limitations. RESULTS: Youth with NMD scored significantly higher on two of the four illness identity dimensions than youth with DM. NMD patients reported significantly less positive illness perceptions, experienced more physical symptoms, and had a lower score on understanding of their illness. Within the NMD group, wheelchair-users have a better understanding of their disease than those who are not wheelchair-bound. CONCLUSIONS: The present study is the first to investigate illness identity and illness perceptions in NMD. More research is needed to provide insight in the identity formation process of the growing group of adolescents with NMDs.


Assuntos
Diabetes Mellitus Tipo 1 , Doenças Neuromusculares , Humanos , Adulto , Adolescente , Doenças Neuromusculares/psicologia , Inquéritos e Questionários , Diabetes Mellitus Tipo 1/psicologia , Personalidade
16.
J Cancer Surviv ; 2023 Nov 28.
Artigo em Inglês | MEDLINE | ID: mdl-38015382

RESUMO

PURPOSE: To identify barriers and facilitators for implementing the Survivorship Passport (SurPass) v2.0 in six long-term follow-up (LTFU) care centres in Europe. METHODS: Stakeholders including childhood cancer survivors (CCSs), healthcare providers (HCPs), managers, information and technology (IT) specialists, and others, participated in six online Open Space meetings. Topics related to Care, Ethical, Legal, Social, Economic, and Information & IT-related aspects of implementing SurPass were evaluated. RESULTS: The study identified 115 barriers and 159 facilitators. The main barriers included the lack of standardised LTFU care in centres and network cooperation, uncertainty about SurPass accessibility, and uncertainty about how to integrate SurPass into electronic health information systems. The main facilitators included standardised and coordinated LTFU care in centres, allowing CCSs to conceal sensitive information in SurPass and (semi)automatic data transfer and filing. CONCLUSIONS: Key barriers to SurPass implementation were identified in the areas of care, ethical considerations, and information & IT. To address these barriers and facilitate the implementation on SurPass, we have formulated 27 recommendations. Key recommendations include using the internationally developed protocols and guidelines to implement LTFU care, making clear decisions about which parties have access to SurPass data in accordance with CCSs, and facilitating (semi)automated data transfer and filing using Health Level 7 (HL7) Fast Healthcare Interoperability Resources (FHIR). IMPLICATIONS FOR CANCER SURVIVORS: The findings of this study can help to implement SurPass and to ensure that cancer survivors receive high-quality LTFU care with access to the necessary information to manage their health effectively.

17.
Health Psychol ; 40(5): 326-336, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-34152786

RESUMO

OBJECTIVES: Prior research has linked illness identity-or the extent to which the illness is integrated into one's identity-to diabetes-specific functioning. Four illness identity dimensions have been identified: rejection, acceptance, engulfment, and enrichment. As longitudinal research on this topic is scarce, this study examined developmental trajectories of illness identity and prospective associations between illness identity and diabetes-specific functioning. METHOD: Adolescents and emerging adults with Type I diabetes, aged 14 to 25 (Mage = 19; 54% girls), participated in a four-wave longitudinal study spanning 3 years (N = 559 at Time 1). Participants filled out questionnaires on illness identity, treatment adherence, and diabetes-specific distress. Hemoglobin A1c (HbA1c) values were obtained from participants' medical records. To chart the development of illness identity over time, we performed latent growth curve modeling. Cross-lagged analysis was used to examine prospective associations between illness identity and diabetes-specific functioning. RESULTS: We observed small linear increases in acceptance (Mslope = .05, p < .01) and engulfment (Mslope = .03, p < .05) and a small linear decrease in rejection (Mslope = -.08, p < .001) across waves (with scale scores ranging between 1 and 5). Rejection negatively predicted and enrichment positively predicted treatment adherence 1 year later, which, in turn, positively predicted enrichment and negatively predicted engulfment over time. Furthermore, rejection and engulfment positively predicted diabetes-specific distress 1 year later. Finally, diabetes-specific distress and HbA1c positively predicted engulfment 1 year later. Standardized cross-lagged coefficients ranged between |.05| and |.11|. CONCLUSIONS: We identified small but interesting changes in three out of four illness identity dimensions. Prospective associations between illness identity and diabetes-specific functioning were bidirectional in nature. (PsycInfo Database Record (c) 2021 APA, all rights reserved).


Assuntos
Atitude Frente a Saúde , Diabetes Mellitus Tipo 1/psicologia , Ajustamento Emocional , Autoimagem , Adolescente , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Inquéritos e Questionários , Adulto Jovem
18.
Diabetes Res Clin Pract ; 163: 108153, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32325107

RESUMO

AIMS: Although research exists on parental communication in adolescents with type 1 diabetes (T1D), the role of communication by health care providers remains understudied. Grounded in Self-Determination Theory, this study examined the role of autonomy-supportive communication (i.e., providing meaningful rationale and offering choices with regard to treatment recommendations) by providers and parents, and how they interact in the prediction of diabetes outcomes. METHODS: In this cross-sectional study, 135 adolescents (mean age 14.3 ± 2.1SD years), 171 mothers, and 121 fathers reported on autonomy-supportive communication from health care providers and parents, and on adolescent treatment adherence. HbA1c values were retrieved from the medical record. RESULTS: In adolescent reports, perceived autonomy-supportive communication from providers but not from parents was positively related to treatment adherence. A significant interaction between autonomy-supportive communication from providers and parents pointed to the highest level of treatment adherence when adolescents perceived both providers and parents as autonomy-supportive. In contrast, parental reports revealed that parental autonomy-supportive communication was positively related to treatment adherence, whereas autonomy-supportive communication by providers was not. CONCLUSIONS: Autonomy-supportive communication by providers and parents is associated with better treatment adherence in adolescents with T1D. Interventions to improve autonomy-supportive communication by parents and providers may improve treatment adherence of adolescents (e.g., communication training).


Assuntos
Comunicação , Diabetes Mellitus Tipo 1/terapia , Pessoal de Saúde/normas , Pais/psicologia , Cooperação e Adesão ao Tratamento/psicologia , Adolescente , Criança , Estudos Transversais , Feminino , Humanos , Masculino
19.
Diabetes Res Clin Pract ; 150: 264-273, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30904747

RESUMO

AIMS: A family approach was applied to examine youth, maternal, and paternal control perceptions in relation to type 1 diabetes outcomes in adolescents and emerging adults. Mean levels of personal and treatment control were compared among patients and parents. Their associations with diabetes outcomes were examined as well. METHODS: The sample included 330 patient-mother-father triads. Patients' (48% male) mean age was 18.25 years (SD = 2.98). All respondents reported on their control perceptions and youth treatment adherence. Physicians provided HbA1c-values. RESULTS: Paired-samples t-tests revealed higher personal control in patients compared to parents. Regression analyses examined if control perceptions predicted treatment adherence and HbA1c. Main effects for patient and maternal personal control and two-way interactions showed the best outcomes when both patients and mothers reported high personal control. Main effects of patient, maternal, and paternal treatment control and three-way interaction terms revealed better outcomes in case of high treatment control in patients and at least one parent, while the poorest outcomes were observed in case of low treatment control in all respondents. CONCLUSIONS: The findings highlight the importance of parental control perceptions on top of patients' own perceptions. A family perspective on illness perceptions and their associations with diabetes outcomes is encouraged.


Assuntos
Glicemia/metabolismo , Diabetes Mellitus Tipo 1/terapia , Pais/psicologia , Cooperação e Adesão ao Tratamento/psicologia , Adolescente , Adulto , Glicemia/análise , Diabetes Mellitus Tipo 1/patologia , Feminino , Humanos , Masculino , Percepção , Adulto Jovem
20.
Psychol Health ; 34(4): 438-455, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30636450

RESUMO

OBJECTIVE: This study examined associations between the functioning of youth with type 1 diabetes and their parents, including parenting dimensions as intervening mechanisms. The study adds to the existing literature by focusing on (1) the concept of parental illness intrusiveness; (2) the (understudied) periods of adolescence and emerging adulthood; and (3) maternal and paternal functioning. DESIGN: Questionnaires were completed by 317 patient-mother dyads and 277 patient-father dyads. All patients (aged 14-25) had type 1 diabetes. The hypothesised model was compared to an alternative model using structural equation modelling. MAIN OUTCOME MEASURES: Youth reported on depressive symptoms and treatment adherence; Physicians provided HbA1c-values. Parents reported on illness intrusiveness, depressive symptoms, and their child's treatment adherence. Patients and parents reported on psychological control and overprotection. RESULTS: The hypothesised path model had a good fit to the data. Parental illness intrusiveness was positively associated with depressive symptoms and both were positively related to overprotection and psychological control. Psychological control was positively related to patients' depressive symptoms and negatively to treatment adherence. Poorer treatment adherence was associated with worse HbA1c-values. CONCLUSION: These findings underscore the relevance of parental illness intrusiveness and emphasise the importance of mothers' and fathers' roles throughout adolescence and emerging adulthood.


Assuntos
Diabetes Mellitus Tipo 1/terapia , Hemoglobinas Glicadas/metabolismo , Relações Pais-Filho , Pais/psicologia , Adolescente , Adulto , Depressão/epidemiologia , Diabetes Mellitus Tipo 1/sangue , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Cooperação e Adesão ao Tratamento/estatística & dados numéricos , Adulto Jovem
SELEÇÃO DE REFERÊNCIAS
DETALHE DA PESQUISA