RESUMO
OBJECTIVE: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL). METHODS: At five years post-diagnosis or relapse, survivors (n = 100; Mage = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%-100% visual analogue scale, while the PedsQL assessed QoL. RESULTS: CRS was low (M = 1.6-1.8, scale: 1-4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2 = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and -0.15 to -0.03, R2 = 0.28 and 0.32, respectively. There were no indirect effects among fathers. CONCLUSIONS: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates.
Assuntos
Sobreviventes de Câncer , Neoplasias , Humanos , Feminino , Criança , Adolescente , Qualidade de Vida , Neoplasias/epidemiologia , Prevalência , SobreviventesRESUMO
Transgender/non-binary (TNB) adolescents are at increased risk for mental health concerns, and caregiver awareness is important to facilitate access to care. Yet, limited research has examined caregiver awareness of TNB mental health. Thus, we examined (1) the prevalence of internalizing symptoms (depression, generalized anxiety, separation anxiety, social anxiety) among TNB adolescents and (2) associations between adolescent and caregiver reports of adolescent mental health symptoms. TNB adolescents (N = 75) aged 12-18 and a caregiver were recruited from a multidisciplinary gender clinic in Ohio. Adolescents self-reported their mental health symptoms via the CDI and SCARED. Caregivers reported their perceptions of the adolescent's mental health symptoms via the CASI-5. Descriptive statistics assessed participant characteristics, adolescent self-reported mental health symptoms, and caregiver proxy reports of adolescent mental health symptoms. Pearson's correlations and scatterplots were used to compare adolescent and caregiver reports and McNemar tests assessed if the differences were statistically significant. Most TNB adolescents reported elevated symptoms of depression (59%), generalized anxiety (75%), separation anxiety (52%), and social anxiety (78%). Caregiver and adolescent reports were significantly correlated for depression (r = .36, p = .002), separation anxiety (r = .39, p < .001), and social anxiety (r = .47, p < .001). Caregiver and adolescent reports of generalized anxiety were not significantly correlated (r = .21, p = .08). McNemar tests were significant (all p < .001), such that adolescents' reports met clinical cutoffs far more than their caregivers' reports. CONCLUSIONS: Though adolescent and caregiver reports were low to moderately correlated, youth reports were consistently higher, suggesting the importance of interventions to increase caregiver understanding of TNB adolescent mental health. WHAT IS KNOWN: ⢠Transgender/non-binary adolescents are at high risk for mental health concerns and caregivers are essential to coordinate care. WHAT IS NEW: ⢠This study expands the diagnostic mental health sub-categories examined in transgender/non-binary adolescents, noting elevated symptoms of separation and social anxiety. ⢠Transgender/non-binary adolescents reported more symptoms of depression, generalized anxiety, separation anxiety, and social anxiety than caregivers.
Assuntos
Cuidadores , Pessoas Transgênero , Humanos , Adolescente , Feminino , Masculino , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Prevalência , Pessoas Transgênero/psicologia , Pessoas Transgênero/estatística & dados numéricos , Criança , Ohio/epidemiologia , Autorrelato , Estudos Transversais , Ansiedade/epidemiologia , Ansiedade/psicologia , Transtornos de Ansiedade/epidemiologia , Transtornos de Ansiedade/psicologia , Depressão/epidemiologia , Depressão/psicologiaRESUMO
OBJECTIVES: To characterize caregiver experiences in the context of advanced pediatric cancer by identifying individual (i.e., demographic factors, stress) and family context factors (i.e., family roles, social support) associated with caregiver strain. METHODS: Families of children (ages 5-25) with advanced cancer (i.e., physician-estimated prognosis < 60%, relapsed/refractory disease) were recruited from a large children's hospital. Mothers (n = 55; 87% White) and fathers (n = 30; 83% White) reported on their caregiver strain, cancer-specific stress, general stress, social support, division of 7 family roles (e.g., medical care of ill child, household chores), and their satisfaction with each role. RESULTS: Parents reported moderate caregiver strain, cancer-specific stress, and general stress, and high social support and satisfaction with family roles. Fathers reported family roles were shared equally, whereas mothers reported either sharing roles or completing them independently. When accounting for income and partnership status, greater caregiver strain for mothers was associated with greater general stress, greater satisfaction with family roles, and lower social support. For fathers, greater caregiver strain was associated only with greater cancer-specific stress. SIGNIFICANCE OF RESULTS: In the context of advanced pediatric cancer, fathers may experience caregiver strain as cancer-specific stress increases, whereas mothers' strain may depend on broader family and social factors. Psychosocial providers should address general and cancer-specific stress within families, and provide resources for enhancing mothers' social support. Additional research is needed with larger, more diverse samples to inform future intervention approaches.
RESUMO
OBJECTIVES: Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents' involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents' involvement in care and their desired change in involvement. METHODS: Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10-23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents' frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis. RESULTS: The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2= .31. Older age was the only significant predictor (ß = .13, p= .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings. SIGNIFICANCE OF RESULTS: Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.
RESUMO
Fertility navigators (FNs) are important in communicating infertility risk and fertility preservation (FP) options to patients receiving gonadotoxic therapies. This retrospective study examined electronic medical records of patients with fertility consults at a large pediatric institution (2017-2019), before and after hiring a full-time FN. Of 738 patient encounters, 173 consults were performed pre-navigator and 565 post-navigator. Fertility consults for long-term follow-up cancer survivors increased most substantially: pre-navigator (n = 7) and post-navigator (n = 387). Across diagnoses, females had a larger increase in consults compared to males (χ2 [3, N = 738] = 8.17, p < .05). Findings highlight FNs' impact on counseling rates, particularly in survivorship.
Assuntos
Sobreviventes de Câncer , Preservação da Fertilidade , Neoplasias , Criança , Feminino , Fertilidade , Preservação da Fertilidade/psicologia , Humanos , Masculino , Neoplasias/terapia , Estudos RetrospectivosRESUMO
OBJECTIVES: This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage. METHODS: Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5-19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child's cancer as a family. RESULTS: Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more. SIGNIFICANCE OF RESULTS: Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child's developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.
RESUMO
BACKGROUND: Approximately half of male childhood cancer survivors experience fertility impairment, which can cause psychological distress. Sperm banking remains underutilized among adolescent males with cancer. Parent recommendation influences banking decisions, yet multi-informant studies have not been conducted to examine fertility preservation (FP) communication and decision making in this population. This study explored FP communication among mothers, fathers, and their male adolescents newly diagnosed with cancer. PROCEDURE: Thirty-three male adolescents, 32 mothers, and 22 fathers completed semi-structured interviews 1-2 months after cancer diagnosis addressing this question: Tell me more about conversations you had about fertility preservation/sperm banking with your health care providers, parents/son, other family members, or anyone else. Interviews were audio-recorded and transcribed verbatim for thematic content analysis. RESULTS: Five process themes emerged: (1) reliance on health care team and social support networks to facilitate FP decisions (only parents); (2) withholding parental opinion and deferring the decision to the adolescent; (3) ease of communication (primarily adolescents); (4) communication barriers/facilitators; (5) not being present or not remembering details of FP conversations with health care providers (primarily fathers and adolescents). Four content themes included: (1) preference for biological (grand)parenthood; (2) consideration of adolescent's future partner's desire for biological parenthood (primarily parents); (3) banking while it is a viable option; (4) openness to alternative parenthood options (e.g., adoption/fostering, primary parents). CONCLUSIONS: Understanding variation in what family members discuss and consider relevant when making FP decisions is an important step toward improving pediatric oncofertility care. Interventions are needed to facilitate family FP-related conversations and optimize decisional satisfaction over time.
Assuntos
Preservação da Fertilidade , Neoplasias , Adolescente , Comunicação , Tomada de Decisões , Feminino , Humanos , Masculino , Mães , Neoplasias/terapia , PaisRESUMO
PURPOSE: Over half of males experience fertility impairment after childhood cancer therapy, which often causes psychosocial distress. Yet, fertility preservation (FP) remains underutilized. The goals of this study were to determine the feasibility and impact of implementing a family-centered FP values clarification tool on sperm banking attempts among adolescent males newly diagnosed with cancer, and identify key determinants of banking attempts. METHODS: A prospective pilot study was conducted among families of males (12-25 years old), prior to cancer therapy. Thirty-nine of 41 families agreed to participate (95%); 98 participants (32 adolescents, 37 mothers, 29 fathers) completed the Family-centered Adolescent Sperm banking values clarification Tool (FAST). Analyses assessed the impact of the FAST on banking attempts and examined associations between demographic/medical characteristics, FAST subscales (perceived threat, benefits, barriers), and banking attempts. RESULTS: Twenty-three (59%) adolescents attempted to bank, compared to 8 adolescents (33%) during baseline assessment (p=.04). Significant associations were identified between banking attempts and adolescents' report of perceived threat (rpb=.45, p=.01) and benefits (rpb=.57, p=.01). Only mothers' proxy reports of adolescent perceived threat (rpb=.42, p=.01) and benefits (rpb=.47, p=.003) were associated with banking attempts, while fathers' self-reported perceived benefits (rpb=.43, p=.03), self-reported barriers (rpb=.49, p=.01), and proxy reports of adolescent perceived threat (rpb=.38, p=.04) and benefits (rpb=.59, p=.02) were associated with banking attempts. CONCLUSION: Adolescent sperm banking attempt rates significantly increased after implementation of a family-centered FP values clarification tool prior to cancer treatment. Findings underscore the importance of targeting both adolescents and their parents, particularly fathers, in FP efforts.
Assuntos
Preservação da Fertilidade , Fertilidade/genética , Preservação do Sêmen , Bancos de Esperma , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Mães , Neoplasias/epidemiologia , Neoplasias/patologia , Estudos Prospectivos , Espermatozoides/crescimento & desenvolvimento , Adulto JovemRESUMO
This study examined the longitudinal associations between fathers' observed parenting behaviors and father-infant attachment (n = 58 father-infant dyads). Fathers were observed playing with their infants at 9 months postpartum and were assessed for stimulating behaviors (i.e. physical and/or object stimulation), as well as their sensitivity and intrusiveness. When the infants were 12 to 18 months of age, fathers and infants participated together in the Strange Situation Procedure (SSP) to assess father-infant attachment security. Logistic regression analyses revealed that higher levels of paternal stimulation at 9 months postpartum were associated with greater odds of classification as a secure father-infant dyad. Additionally, fathers' observed intrusiveness at 9 months postpartum moderated this association; greater paternal stimulation was associated with significantly greater odds of father-infant attachment security at low and average levels of paternal intrusiveness, but not at high levels of paternal intrusiveness. This study provides new insight into the paternal behaviors that may foster secure father-infant attachment.
Assuntos
Relações Pai-Filho , Pai/psicologia , Apego ao Objeto , Poder Familiar/psicologia , Adolescente , Adulto , Comportamento , Desenvolvimento Infantil , Feminino , Humanos , Lactente , Modelos Logísticos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Adulto JovemRESUMO
Although the association between maternal gatekeeping and relationship functioning has been explored by a few studies, none of these have focused on fathers' perceptions of these constructs. Given that today's new fathers are challenged by elevated expectations for active parenting and coparenting even as most new mothers remain primary caregivers of infant children, this is a critical omission. This study examined the associations between new fathers' perceptions of maternal gatekeeping and change in dyadic adjustment as mediated through coparenting closeness. Maternal gatekeeping was reported by 182 fathers at 3 months postpartum, coparenting closeness was reported at 3 and 6 months postpartum, and dyadic adjustment was reported during the third trimester of pregnancy and at 9 months postpartum. Fathers' perceptions of relative change in coparenting closeness from 3 to 6 months mediated associations between fathers' perceptions of maternal gatekeeping at 3 months and relative change in dyadic adjustment from the third trimester to 9 months postpartum. In particular, findings indicate that greater perceived maternal gate opening was associated with higher levels of dyadic adjustment through higher levels of coparenting closeness, whereas greater perceived maternal gate closing was associated with lower levels of dyadic adjustment through lower levels of coparenting closeness. This study highlights the importance of studying fathers in the context of the family system and the role of the coparenting relationship at the transition to parenthood in couple relationship functioning.
Aunque la asociación entre el control materno y el funcionamiento de la relación ha sido analizado por algunos estudios, ninguno de estos se ha centrado en las percepciones de los padres de estos constructos. Teniendo en cuenta que los padres recientes de hoy se enfrentan al desafío de expectativas elevadas de crianza y cocrianza activas, incluso cuando la mayoría de las madres recientes siguen siendo las cuidadoras principales de los bebés, esta es una omisión crucial. Este estudio examinó las asociaciones entre las percepciones de los padres recientes con respecto al control materno y el cambio en el ajuste diádico a través de la proximidad en la cocrianza. Ciento ochenta y dos padres informaron el control materno tres meses después del parto, la proximidad en la cocrianza se informó a los tres y a los seis meses después del parto y el ajuste diádico se informó durante el tercer trimestre de embarazo y a los nueve meses después del parto. Las percepciones de los padres del cambio relativo en la proximidad de la cocrianza desde los tres a los seis meses mediaron las asociaciones entre las percepciones de los padres del control materno a los tres meses y del cambio relativo en el ajuste diádico desde el tercer trimestre hasta los nueve meses después del parto. En particular, los resultados indican que una mayor percepción de soltura del control de la madre estuvo asociado con niveles más altos de ajuste diádico mediante niveles más altos de proximidad en la cocrianza, mientras que una mayor percepción de rigurosidad del control de la madre estuvo asociado con niveles más bajos de ajuste diádico mediante niveles más bajos de proximidad en la cocrianza. Este estudio destaca la importancia de estudiar a los padres en el contexto del sistema familiar y el papel que desempeña la relación de cocrianza durante la transición a la paternidad en el funcionamiento de la relación de pareja.
Assuntos
Relações Familiares/psicologia , Pai/psicologia , Cuidado do Lactente/psicologia , Poder Familiar/psicologia , Período Pós-Parto/psicologia , Adulto , Feminino , Humanos , Lactente , Masculino , Mães/psicologia , PercepçãoRESUMO
Background/objectives: Little is known about the COVID-19 pandemic and its impact on the quality of life (QoL) of children with cancer who may be more vulnerable to the pandemic's effects. We examined associations between COVID-19 exposure and impact on parent-proxy reported QoL in children with cancer, and potential moderation based on the child's cancer status (i.e., time since diagnosis, on/off treatment). Design/method: Parents of children with cancer were recruited February-April 2021 via Facebook and Momcology. Parents completed the COVID-19 Exposure and Family Impact Scale and a child QoL measure. Controlling for parent age, income, child age, and child sex, we examined the indirect effect of COVID-19 impact on the association between COVID-19 exposure and parent-proxy reported child QoL, as well as the moderating role of cancer status. Results: Parents (N = 401) reported lower child QoL scores (M = 59.74) than prepandemic reports of children with cancer, t(735) = -6.98, p < .001. Mediation analyses revealed a significant indirect effect, 95% CI [-0.47, -0.13]: Higher COVID-19 exposure was associated with higher COVID-19 impact (a = 0.47, p < .001), which was related to lower QoL (b = -0.56, p < .001). The association between impact and QoL was stronger as time since diagnosis increased (95%CI [-0.08, -0.001]), yet treatment status did not moderate this path. Conclusions: Parents who report greater COVID-19 impact may also report lower QoL in their children with cancer, especially further from diagnosis. Nurses and clinicians should be aware of the pandemic's negative impact and screen for COVID-19 related distress. Additionally, results highlight the importance of long-term, family-centered care, regardless of whether children receive treatment or survivorship care.
Assuntos
COVID-19 , Neoplasias , Criança , Humanos , Qualidade de Vida , Pandemias , COVID-19/epidemiologia , Pais , Neoplasias/epidemiologiaRESUMO
COVID-19 public health measures caused significant disruptions to child and caregivers' mental and physical well-being, including quality of life (QoL). However, in samples outside the United States (U.S.), greater resilience has been linked to lower COVID-19 impact on child QoL. Thus, understanding individual and dyadic factors contributing to resilience and QoL during COVID-19 within the United States may provide important insight for points of intervention. This study aimed to characterize the interdependent effects of child and caregiver COVID-19 impact on child and caregiver resilience, as well as on child-reported and caregiver proxy-reported child QoL. U.S. caregivers (n = 231; 95.7% female) and their 8-17-year-old children (n = 231; 54.5% male; Mage = 11.87; SDage = 2.66) reported their COVID-19 impact between May and July 2020 (T1). Follow-up self-reports on resilience and child QoL occurred between November 2020 and January 2021 (T2). Two actor-partner interdependence models (APIM) and one actor-partner interdependence mediation model (APIMeM) assessed associations among caregiver and child COVID-19 impact, resilience, and QoL. An APIM revealed significant negative actor and partner effects of COVID-19 impact on child self-reported and caregiver proxy-reported child QoL. Another APIM revealed an actor effect from COVID-19 impact to one's own resilience. The APIMeM revealed two indirect effects revealing that when children or caregivers reported greater levels of T1 COVID-19 impact, it was associated with lower levels of T2 child-reported resilience, which was subsequently associated with lower T2 child-reported QoL. Findings suggested that both child and caregiver perceptions of the pandemic were important for their own and the others' resilience, as well as child QoL. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
Assuntos
COVID-19 , Cuidadores , Qualidade de Vida , Resiliência Psicológica , Humanos , COVID-19/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Criança , Adolescente , Cuidadores/psicologia , Adulto , Estados UnidosRESUMO
A child's death from cancer may increase the risk for poor self-worth in bereaved siblings. Furthermore, bereaved parents may experience depressive symptoms and communicate differently with their surviving children. However, limited research has examined family factors associated with self-worth in bereaved siblings. Thus, we examined: (a) differences in parental depressive symptoms, parent-child communication, and sibling self-worth between bereaved and nonbereaved families and (b) indirect effects of parental depressive symptoms and communication quality on the association between bereavement and sibling self-worth. Bereaved parents and siblings were recruited 3-12 months after a child's death from cancer. Bereaved (n = 72) and nonbereaved families of classmates (n = 58) completed home-based questionnaires upon enrollment (T1), and 48 bereaved and 45 nonbereaved families completed 1-year follow-up (T2). Relative to controls at T1 and T2, bereaved mothers, but not fathers, reported more depressive symptoms. Bereaved siblings reported poorer maternal and similar paternal communication, and similar levels of self-worth compared to controls. Both cross-sectional and longitudinal serial mediation models for mothers were significant. Bereaved mothers were at greater risk for depressive symptoms, which adversely affected sibling self-worth over time through disrupted mother-child communication. The father sample was limited, but the cross-sectional model was nonsignificant. Mothers and fathers may grieve differently and may require different therapeutic approaches. Family-centered interventions should target bereaved mothers' emotional adjustment and communication to enhance sibling self-worth. Additionally, clinicians should bolster other sources of support for bereaved siblings to promote adaptive outcomes. (PsycInfo Database Record (c) 2023 APA, all rights reserved).
Assuntos
Neoplasias , Irmãos , Masculino , Feminino , Humanos , Irmãos/psicologia , Depressão/etiologia , Depressão/psicologia , Estudos Transversais , Pais/psicologia , Mães , Neoplasias/psicologia , ComunicaçãoRESUMO
PURPOSE: We aimed to examine the concurrent associations of gender-affirming hormonal interventions (i.e., puberty blockers, testosterone, estrogen), as well as family and friend social support, on transgender and nonbinary (TNB) adolescents' reports of anxiety symptoms, depressive symptoms, nonsuicidal self-injury (NSSI), and suicidality. We hypothesized that gender-affirming hormonal interventions and greater social support would be associated with lower levels of mental health concerns. METHODS: Participants (n = 75; aged 11-18; Mage = 16.39 years) were recruited for this cross-sectional study from a gender-affirming multidisciplinary clinic. Fifty-two percent were receiving gender-affirming hormonal interventions. Surveys assessed anxiety and depressive symptoms, NSSI and suicidality in the past year, and social support from family, friends, and significant others. Hierarchical linear regression models examined associations between gender-affirming hormonal interventions and social support (i.e., family, friend) with mental health while accounting for nonbinary gender identity. RESULTS: Regression models explained 15%-23% of variance in TNB adolescents' mental health outcomes. Gender-affirming hormonal interventions were associated with fewer anxiety symptoms (ß = -0.23; p < .05). Family support was associated with fewer depressive symptoms (ß = -0.33; p = .003) and less NSSI (ß = -0.27; p = .02). Friend support was associated with fewer anxiety symptoms (ß = -0.32; p = .007) and less suicidality (ß = -0.25; p = .03). DISCUSSION: TNB adolescents had better mental health outcomes in the context of receiving gender-affirming hormonal interventions and having greater support from family and friends. Findings highlight the important role of quality family and friend support for TNB mental health. Providers should aim to address both medical and social factors to optimize TNB mental health outcomes.
Assuntos
Pessoas Transgênero , Humanos , Masculino , Feminino , Adolescente , Pessoas Transgênero/psicologia , Identidade de Gênero , Saúde Mental , Estudos Transversais , Apoio SocialRESUMO
Many childhood cancer survivors desire biological children but are at risk for infertility after treatment. One option for mitigating risk is the use of fertility preservation prior to gonadotoxic therapy. Adolescents and emerging adults may rely on their parents to help them decide whether to use fertility preservation. While this is often a collaborative process, it is currently unknown how parents can optimally support adolescents and emerging adults through this decision. To address this gap, we developed a family-centered, psychoeducational intervention to prompt adolescents and emerging adults to reflect on their future parenthood goals and attitudes towards fertility preservation, as well as to prompt their parents (or other caregivers) to reflect on their own and their child's perspectives on the topic. In this randomized controlled trial, families will be randomized to either the standard of care control group (fertility consult) or the intervention group. After their fertility consult, adolescents and emerging adults and parents in the intervention group will complete a fertility preservation values clarification tool and then participate in a guided conversation about their responses and the fertility preservation decision. The primary expected outcome of this study is that participation in the intervention will increase the use of fertility preservation. The secondary expected outcome is an improvement in decision quality. Chi-square analyses and t-tests will evaluate primary and secondary outcomes. The goal of this intervention is to optimize family-centered fertility preservation decision-making in the context of a new cancer diagnosis to help male adolescents and emerging adults achieve their future parenthood goals.
Assuntos
Sobreviventes de Câncer/psicologia , Comunicação , Tomada de Decisões , Preservação da Fertilidade/psicologia , Infertilidade Masculina/terapia , Neoplasias/complicações , Adolescente , Adulto , Criança , Humanos , Infertilidade Masculina/etiologia , Infertilidade Masculina/psicologia , Masculino , Neoplasias/diagnóstico , Pais , Projetos Piloto , Sistemas de Apoio Psicossocial , Ensaios Clínicos Controlados Aleatórios como Assunto , Encaminhamento e Consulta , Inquéritos e Questionários , Adulto JovemRESUMO
Half of male childhood cancer survivors experience treatment-related fertility impairment, which can lead to distress. Survivors often regret forgoing fertility preservation (FP), and decisional dissatisfaction is associated with a lower quality of life. This mixed methods study examined short-term FP decisional satisfaction among families of male adolescents newly diagnosed with cancer who received an initial fertility consult and completed an FP values clarification tool. One-two months after the FP decision, thirty-nine families completed the Brief Subjective Decision Quality measure. Decisional satisfaction was compared for participants (mothers, fathers, adolescents) who did and did not attempt to bank. Semi-structured interviews included the following question: How do you/your family feel about the banking decision now/in the future? Decisional quality scores were moderate-high (M = 5.74-6.33 out of 7), with no significant differences between non-attempter (n = 15) and attempter (n = 24) families (adolescents: p = 0.83, d = 0.08; mothers: p = 0.18, d = 0.45; fathers: p = 0.32, d = 0.44). Three qualitative themes emerged among non-attempter families: (1) satisfaction with decision (50% of participants), (2) acceptance of decision (60%), and (3) potential for future regret (40%). Satisfaction with decision was the only theme identified in attempter families (93%). Quantitively, short-term decisional satisfaction was high regardless of the banking attempt. However, the qualitative findings suggest that the experiences of families who did not bank may be more nuanced, as several participants discussed a potential for future regret, highlighting the importance of ongoing support.