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1.
Front Med (Lausanne) ; 11: 1332434, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38606155

RESUMO

Objectives: Paediatric oncologists often encounter challenges when seeking compassionate access to off-label therapies for their patients. This study employed implementation science and co-design techniques to develop the ProCure medicines database, with the goal of streamlining the application process and addressing identified barriers in paediatric oncology. Methods: This study utilised an exploratory qualitative research design. Seventeen healthcare providers, including oncologists, nurse consultants, and allied health professionals, participated in semi-structured interviews guided by the Consolidated Framework for Implementation Research (CFIR) and a visual process map aid. Deductive qualitative data analysis, according to the CFIR constructs, identified key barriers and facilitators. Collaborative design sessions engaged multidisciplinary teams to develop the ProCure beta version. Results: Barriers to off-label therapy access included resource-intensive applications, time sensitive decision-making, and complex pharmaceutical information. Facilitators included Drug Access Navigators, Molecular Tumour Boards, and a multi-disciplinary approach. ProCure addressed end-user needs by centralising medicines information. Additional features suggested by healthcare providers included blood-brain-barrier penetrability data and successful application examples. Conclusion: ProCure represents a promising solution to the challenges paediatric oncologists face in accessing off-label therapies. By centralising information, it simplifies the application process, aids decision-making, and promotes a collaborative approach to patient care. The potential of the database to stream and enhance off-label therapy access underscores its relevance in improving paediatric oncology practise. Further research and implementation efforts are warranted to assess ProCure's real-world impact and refine its features based on user feedback.

2.
Palliat Support Care ; 22(3): 539-545, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-38263685

RESUMO

OBJECTIVES: Hard-to-treat childhood cancers are those where standard treatment options do not exist and the prognosis is poor. Healthcare professionals (HCPs) are responsible for communicating with families about prognosis and complex experimental treatments. We aimed to identify HCPs' key challenges and skills required when communicating with families about hard-to-treat cancers and their perceptions of communication-related training. METHODS: We interviewed Australian HCPs who had direct responsibilities in managing children/adolescents with hard-to-treat cancer within the past 24 months. Interviews were analyzed using qualitative content analysis. RESULTS: We interviewed 10 oncologists, 7 nurses, and 3 social workers. HCPs identified several challenges for communication with families including: balancing information provision while maintaining realistic hope; managing their own uncertainty; and nurses and social workers being underutilized during conversations with families, despite widespread preferences for multidisciplinary teamwork. HCPs perceived that making themselves available to families, empowering them to ask questions, and repeating information helped to establish and maintain trusting relationships with families. Half the HCPs reported receiving no formal training for communicating prognosis and treatment options with families of children with hard-to-treat cancers. Nurses, social workers, and less experienced oncologists supported the development of communication training resources, more so than more experienced oncologists. SIGNIFICANCE OF RESULTS: Resources are needed which support HCPs to communicate with families of children with hard-to-treat cancers. Such resources may be particularly beneficial for junior oncologists and other HCPs during their training, and they should aim to prepare them for common challenges and foster greater multidisciplinary collaboration.


Assuntos
Comunicação , Pessoal de Saúde , Neoplasias , Pesquisa Qualitativa , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Pessoal de Saúde/psicologia , Pessoal de Saúde/estatística & dados numéricos , Feminino , Masculino , Adulto , Austrália , Relações Profissional-Família , Pessoa de Meia-Idade , Adolescente , Criança
3.
Orphanet J Rare Dis ; 18(1): 277, 2023 09 07.
Artigo em Inglês | MEDLINE | ID: mdl-37679855

RESUMO

BACKGROUND: Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs. RESULTS: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory. CONCLUSION: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.


Assuntos
Demência , Qualidade de Vida , Humanos , Criança , Adaptação Psicológica , Bases de Dados Factuais , Pais , Doenças Raras
4.
Cancer ; 129(22): 3620-3632, 2023 11 15.
Artigo em Inglês | MEDLINE | ID: mdl-37382186

RESUMO

BACKGROUND: Germline genome sequencing in childhood cancer precision medicine trials may reveal pathogenic or likely pathogenic variants in cancer predisposition genes in more than 10% of children. These findings can have implications for diagnosis, treatment, and the child's and family's future cancer risk. Understanding parents' perspectives of germline genome sequencing is critical to successful clinical implementation. METHODS: A total of 182 parents of 144 children (<18 years of age) with poor-prognosis cancers enrolled in the Precision Medicine for Children with Cancer trial completed a questionnaire at enrollment and after the return of their child's results, including clinically relevant germline findings (received by 13% of parents). Parents' expectations of germline genome sequencing, return of results preferences, and recall of results received were assessed. Forty-five parents (of 43 children) were interviewed in depth. RESULTS: At trial enrollment, most parents (63%) believed it was at least "somewhat likely" that their child would receive a clinically relevant germline finding. Almost all expressed a preference to receive a broad range of germline genomic findings, including variants of uncertain significance (88%). Some (29%) inaccurately recalled receiving a clinically relevant germline finding. Qualitatively, parents expressed confusion and uncertainty after the return of their child's genome sequencing results by their child's clinician. CONCLUSIONS: Many parents of children with poor-prognosis childhood cancer enrolled in a precision medicine trial expect their child may have an underlying cancer predisposition syndrome. They wish to receive a wide scope of information from germline genome sequencing but may feel confused by the reporting of trial results.


Assuntos
Neoplasias , Humanos , Criança , Neoplasias/genética , Neoplasias/terapia , Neoplasias/diagnóstico , Motivação , Medicina de Precisão/métodos , Pais , Genótipo
5.
Cancers (Basel) ; 14(21)2022 Oct 28.
Artigo em Inglês | MEDLINE | ID: mdl-36358729

RESUMO

Precision medicine is changing the treatment of childhood cancer globally, however little is known about quality of life (QoL) in children and adolescents participating in precision medicine trials. We examined QoL among patients enrolled in PRISM, the Zero Childhood Cancer Program's precision medicine trial for high-risk childhood cancer. We assessed patient QoL via self-report (aged 12-17 years) and parent-proxy (aged 4-17 years) completion of the EQ-5D-Y. We analysed data using descriptive statistics and regression models. Patients (n = 23) and parents (n = 136) provided data after trial enrolment and following receipt of trial results and treatment recommendations (n = 8 patients, n = 84 parents). At enrolment, most patients were experiencing at least some difficulty across more than one QoL domain (81% patient self-report, 83% parent report). We did not find strong evidence of a change in QoL between timepoints, or of demographic or disease factors that predicted parent-reported patient QoL (EQ-VAS) at enrolment. There was strong evidence that receiving a treatment recommendation but not a change in cancer therapy was associated with poorer parent-reported patient QoL (EQ-VAS; Mdiff = -22.5, 95% CI: -36.5 to -8.5, p = 0.006). Future research needs to better understand the relationship between treatment decisions and QoL and would benefit from integrating assessment of QoL into routine clinical care.

6.
Pediatr Blood Cancer ; 69(12): e30015, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36200485

RESUMO

BACKGROUND: Childhood cancer is highly distressing for families and can place strain on parents' relationships. Parental functioning and cohesiveness are important predictors of family functioning and adaptation to stress. This qualitative study investigated the perceived impact of childhood cancer on parents' relationship with their partner, with a focus on emotional and sexual intimacy. METHODS: We conducted semi-structured interviews with 48 parents (42 mothers, six fathers) of children under the age of 18 who had completed curative cancer treatment. We analysed the interviews using thematic analysis. RESULTS: At interview, parents were on average 40.7 years old (SD = 5.5, range: 29-55 years), and had a child who had completed cancer treatment between 3 months and 10.8 years previously (M = 22.1 months). All participants were living with their partner in a married/de facto relationship. Most parents reported that their child's cancer treatment had a negative impact on emotional and sexual intimacy with their partner, with some impacts extending to the post-treatment period. Reasons for compromised intimacy included exhaustion and physical constraints, having a shifted focus, and discord arising from different coping styles. Some parents reported that their relationship strengthened. Parents also discussed the impact of additional stressors unrelated to the child's cancer experience. CONCLUSIONS: Parents reported that childhood cancer had a negative impact on aspects of emotional and sexual intimacy, although relationship strengthening was also evident. It is important to identify and offer support to couples who experience ongoing relationship stress, which may have adverse effects on family functioning and psychological wellbeing into survivorship.


Assuntos
Neoplasias , Navios , Feminino , Criança , Humanos , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , Mães
7.
Cancers (Basel) ; 13(22)2021 Nov 09.
Artigo em Inglês | MEDLINE | ID: mdl-34830752

RESUMO

We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents' health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child's quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents' health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

8.
Cancers (Basel) ; 13(10)2021 May 18.
Artigo em Inglês | MEDLINE | ID: mdl-34070134

RESUMO

Telehealth interventions offer a practical platform to support adolescent and young adult (AYA) cancer survivors' mental health needs after treatment, yet efficacy data are lacking. We evaluated an online, group-based, videoconferencing-delivered cognitive-behavioral therapy (CBT) intervention ('Recapture Life') in a 3-arm randomized-controlled trial comparing Recapture Life with an online peer-support group, and a waitlist control, with the aim of testing its impact on quality of life, emotional distress and healthcare service use. Forty AYAs (Mage = 20.6 years) within 24-months of completing treatment participated, together with 18 support persons. No groupwise impacts were measured immediately after the six-week intervention. However, Recapture Life participants reported using more CBT skills at the six-week follow-up (OR = 5.58, 95% CI = 2.00-15.56, p = 0.001) than peer-support controls. Recapture Life participants reported higher perceived negative impact of cancer, anxiety and depression at 12-month follow-up, compared to peer-support controls. Post-hoc analyses suggested that AYAs who were further from completing cancer treatment responded better to Recapture Life than those who had completed treatment more recently. While online telehealth interventions hold promise, recruitment to this trial was challenging. As the psychological challenges of cancer survivorship are likely to evolve with time, different support models may prove more or less helpful for different sub-groups of AYA survivors at different times.

9.
J Adolesc Young Adult Oncol ; 10(6): 711-719, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-33960837

RESUMO

Purpose: Adolescent and young adult (AYA) cancer survivors' families can face ongoing challenges into survivorship. Families' adjustment and functioning as a unit can subsequently impact AYAs' mental health and quality of life. This study examined AYA cancer survivors' perceived family functioning, compared with their peers, and investigated factors associated with family functioning. Methods: Eligible participants were aged between 15 and 40 years, fluent in English, and cancer survivors who had completed treatment. AYA cancer survivors were recruited from hospital clinics, and the comparison group from an affiliated university campus. Participants completed the McMaster Family Assessment Device, Kidcope, and the Depression, Anxiety and Stress Scale-Short Form. We analyzed between-group differences in family functioning using multivariate analysis of covariance and used partial correlations to investigate associations between demographic cancer-related psychological coping variables and family functioning. Results: Ninety-three AYA cancer survivors and 141 comparison peers participated (ages: 15-32 years). AYA cancer survivors reported significantly better family functioning (p = 0.029), lower depression (p = 0.016), and anxiety symptoms (p = 0.008) compared with the comparison group. Approximately one-third of AYA survivors (34.4%) reported clinically significant maladaptive family functioning; however, this was more prevalent in the comparison group (50.4%). After adjusting for covariates, poorer family functioning was associated with AYA survivors using more avoidant escape-oriented coping strategies (p = 0.010). Conclusions: Our cancer survivor cohort reported better family functioning and psychological outcomes compared with their peers. Interventions targeting avoidant coping behaviors may support improved family functioning in some survivors. Further research disentangling the relationship between coping mechanisms and family functioning among AYA cancer survivors is needed.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Ansiedade , Humanos , Neoplasias/terapia , Qualidade de Vida , Sobreviventes , Adulto Jovem
10.
J Adolesc Young Adult Oncol ; 10(5): 540-548, 2021 10.
Artigo em Inglês | MEDLINE | ID: mdl-33393866

RESUMO

Qualitative research is a useful and important way to describe and analyze the experiences of adolescents and young adults (AYAs) with cancer. However, undertaking qualitative research with AYAs living with, or beyond, a cancer diagnosis requires careful planning and a well-informed approach for participants with a high level of vulnerability and who are at a crucial stage developmentally. This article reflects on the challenges of including AYAs with cancer between the ages of 16 and 25 years in qualitative research. By drawing on each author's own experiences of engaging in qualitative research interviews with AYAs with cancer, the article provides suggestions regarding how best to manage challenges and yield valuable data describing their experiences. Insights that are shared between qualitative researchers in this field may assist in preparing for the challenges posed by conducting qualitative research with this group and may help researchers to manage this activity successfully.


Assuntos
Neoplasias , Adolescente , Adulto , Humanos , Neoplasias/terapia , Pesquisa Qualitativa , Adulto Jovem
11.
Epilepsy Behav ; 112: 107382, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32854014

RESUMO

OBJECTIVE: Early-onset epilepsy has broad physical and psychosocial impacts, and parents have a wide variety of information needs. This systematic review set out to assess 1) whether parents of children with early-onset epilepsy have unmet information needs and 2) their preferences regarding information content and style of information delivery. METHODS: We searched Medline, Embase, PsychInfo, and CINAHL using keywords relating to information needs, information resources, and preferences for information delivery. We limited the search to parent populations and included all peer-reviewed publications published in English after the year 2005. RESULTS: Eleven studies met our inclusion criteria. Parents reported a clear need for understandable, realistic, and focused information, highlighting a particular need for content about comorbidities and emotional support. Parents reported limited availability of detailed information resources on early-onset epilepsy, which compromised their ability to access appropriate healthcare services. Unmet information needs were associated with greater levels of stress, poorer psychosocial outcomes, and lower satisfaction with healthcare services. SIGNIFICANCE: The results highlight the importance of detailed epilepsy information for families. Healthcare professionals should be aware of the impact of a lack of epilepsy information on family wellbeing. Multipronged and tailored interventions targeting the information needs of families are warranted.


Assuntos
Epilepsia , Pais , Criança , Aconselhamento , Pessoal de Saúde , Humanos
12.
J Pers Med ; 10(1)2020 Feb 14.
Artigo em Inglês | MEDLINE | ID: mdl-32075154

RESUMO

Precision medicine is changing cancer care and placing new demands on oncology professionals. Precision medicine trials for high-risk childhood cancer exemplify these complexities. We assessed clinicians' (n = 39) and scientists' (n = 15) experiences in the first year of the PRecISion Medicine for Children with Cancer (PRISM) trial for children and adolescents with high-risk cancers, through an in-depth semi-structured interview. We thematically analysed participants' responses regarding their professional challenges, and measured oncologists' knowledge of genetics and confidence with somatic and germline molecular test results. Both groups described positive early experiences with PRISM but were cognisant of managing parents' expectations. Key challenges for clinicians included understanding and communicating genomic results, balancing biopsy risks, and drug access. Most oncologists rated 'good' knowledge of genetics, but a minority were 'very confident' in interpreting (25%), explaining (34.4%) and making treatment recommendations (18.8%) based on somatic genetic test results. Challenges for scientists included greater emotional impact of their work and balancing translational outputs with academic productivity. Continued tracking of these challenges across the course of the trial, while assessing the perspectives of a wider range of stakeholders, is critical to drive the ongoing development of a workforce equipped to manage the demands of paediatric precision medicine.

13.
Support Care Cancer ; 28(9): 4467-4476, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-31927756

RESUMO

PURPOSE: Following their child's cancer diagnosis, parents must rapidly familiarize themselves with cancer-specific information and the health-care setting. Theory-driven research is needed to understand and address parents' difficulties when interacting with health-care professionals (HCPs). We examined parents' health-care experiences during and after the child's cancer treatment. METHODS: We recruited parents of children/adolescents (aged < 18 years) who had recently completed cancer treatment with curative intent from eight Australian hospitals. We conducted in-depth interviews using the psychosocial adjustment to illness scale while recruiting for the "CASCADE" survivorship intervention. We used grounded theory to explore parents' health-care experiences. RESULTS: Fifty-two mothers and six fathers of survivors (mean age at diagnosis = 5.1 years, time since treatment = 1.9 years) participated. Parents' experiences were characterized by (1) positive and negative interactions, (2) attitudes towards health care and HCPs, (3) trust and mistrust in the doctor-parent relationship, and (4) parents' engagement in care. Parents built trust with HCPs, who seemed approachable and personable. Although parents' experience was overall very positive, nearly half of parents reported negative interactions and mistrust. Parents rationalized negative experiences as caused by constraints in the health-care setting. Most parents felt support ended prematurely. We propose a new model accounting for these experiences and identifying potential underlying mechanisms. CONCLUSIONS: Depending on their degree of trust, parents followed recommendations more closely (high trust) or focused on being advocates for their child (low trust). Parents minimized the impact of negative HCP interactions through internal, rationalizing processes. Our findings demonstrate parents' flexibility in acting as a dynamic buffer between HCP-interactions and their child.


Assuntos
Neoplasias/psicologia , Relações Profissional-Família/ética , Adulto , Pré-Escolar , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto Jovem
15.
Pediatr Blood Cancer ; 66(8): e27762, 2019 08.
Artigo em Inglês | MEDLINE | ID: mdl-31006986

RESUMO

BACKGROUND: Genetic testing in children for hereditary cancer predisposition syndromes (CPSs) involves unique psychosocial and family-systems considerations. This retrospective study explored the perspectives and emotional reactions of parents and young adults about cancer-related genetic counseling and testing offered to children in the family. METHODS: Families were eligible if they had considered genetic testing for a child (≤18 years) within the family. Parents and young adults ≥16 years participated in semistructured interviews that we coded and identified key themes. We also quantitively assessed emotional distress, quality of life, impact of receiving genetic cancer risk information, and service-related satisfaction. RESULTS: From 35 interviews (26 parents, nine young adults), we identified themes spanning families' experiences from referral to genetic services to the longer term impact of receiving information about family cancer risk from testing of children. Supported by quantitative data, families generally described positive experiences of genetic services and reported benefits to genetic testing. Nevertheless, families faced unique emotional and relational challenges that changed over the family lifecycle. Those challenges differed according to whether the child was asymptomatic or had a cancer diagnosis at testing. Parents of children with cancer described genetic consultations as a secondary concern to the immediate stressors of their child's treatment. CONCLUSIONS: We conclude that the successful integration of cancer genetics into pediatric cancer care requires specialist pediatric genetic counseling and psychosocial support services that are able to respond to families' changing needs.


Assuntos
Aconselhamento Genético , Testes Genéticos/métodos , Neoplasias/diagnóstico , Neoplasias/psicologia , Pais/psicologia , Apoio Social , Estresse Psicológico , Adaptação Psicológica , Adulto , Idoso , Tomada de Decisões , Emoções , Feminino , Seguimentos , Predisposição Genética para Doença , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/genética , Psico-Oncologia , Estudos Retrospectivos , Medição de Risco , Adulto Jovem
16.
Support Care Cancer ; 27(11): 4331-4340, 2019 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30880372

RESUMO

PURPOSE: Few studies have addressed the way in which families of children with cancer make treatment decisions, and how we can meet parents' and young peoples' decisional involvement needs. We aimed to explore parents' and adolescents' views and perceptions of making medical decisions in pediatric oncology. METHODS: We conducted semi-structured interviews with 25 parents of children diagnosed with cancer in the past 12 months, and 5 adolescents diagnosed in the past 12 months. Our interview schedule was underpinned by Elwyn and Miron-Shatz's decision-making model. The model acknowledges the deliberation (process of coming to a decision) and determination (making a choice) phases of decision-making. We conducted a thematic analysis. RESULTS: Our findings indicate that information provision is not enough to facilitate parents' decision-making involvement. Many parents sought additional information to meet their individual needs and preferences. While many parents and young people desired decisional involvement, they trusted the doctors to make treatment decisions. Feelings of distress, inadequacy, and lack of choice impacted decision-making participation. Regardless, many parents in our study were satisfied with treatment decisions, but this was largely dependent on positive treatment outcomes. CONCLUSION: Our study contributes to understanding how families of a child with cancer make treatment decisions. Families tend to rely on doctors to make treatment decisions, but often seek additional information to help them feel involved in the decision process. Findings highlight that decision-making in pediatric oncology should focus on involving families in the deliberation phase, rather than just determination of choice.


Assuntos
Tomada de Decisões , Neoplasias/psicologia , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa
17.
JCO Precis Oncol ; 3: 1-11, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35100729

RESUMO

PURPOSE: Children with high-risk cancers have low survival rates because current treatment options are limited. Precision medicine trials are designed to offer patients individualized treatment recommendations, potentially improving their clinical outcomes. However, parents' understanding is often limited, and expectations of benefit to their own child can be high. Health care professionals (HCPs) are often not familiar with precision medicine and might find managing families' expectations challenging. Scientists find themselves working with high expectations among different stakeholders to rapidly translate their identification of actionable targets in real time. Therefore, we wanted to gain an in-depth understanding of the experiences of all stakeholders involved in a new precision medicine pilot trial called TARGET, including parents, their child's HCPs, and the scientists who conducted the laboratory research and generated the data used to make treatment recommendations. METHODS: We conducted semistructured interviews with all participants and analyzed the interviews thematically. RESULTS: We interviewed 15 parents (9 mothers; 66.7% bereaved), 17 HCPs, and 16 scientists. We identified the following themes in parents' interviews: minimal understanding and need for more information, hope as a driver of participation, challenges around biopsies, timing, and drug access, and few regrets. HCP and scientist interviews revealed themes such as embracing new technologies and collaborations and challenges managing families' expectations, timing of testing and test results, and drug access. CONCLUSION: Educating families, HCPs, and scientists to better understand the benefits and limitations of precision medicine trials may improve the transparency of the translation of discovery genomics to novel therapies, increase satisfaction with the child's care, and ameliorate the additional long-term psychosocial burden for families already affected by high-risk childhood cancer.

18.
Psychooncology ; 28(2): 284-292, 2019 02.
Artigo em Inglês | MEDLINE | ID: mdl-30414219

RESUMO

OBJECTIVE: Online psychological therapies provide a way to connect adolescent and young adult (AYA) cancer survivors to evidence-based support. We aimed to establish the feasibility, acceptability, and safety of Recapture life, a six-session group-based online cognitive-behavioural intervention, led by a facilitator, for AYAs in the early post-treatment period. METHODS: A randomised-controlled trial compared Recapture Life to an online peer-support group control and a waitlist control. Participants could nominate a support person. Acceptability was assessed using study opt-in and retention rates, participant-reported benefits/burdens of participation, and group facilitator burden. We also assessed the feasibility (eg, frequency/impact of technological difficulties) and psychological safety (ie, occurrence of clinically concerning distress) of the program. RESULTS: Sixty-one participants took part (45 AYAs, 51.1% female; 19 support people). The opt-in rate was 30%, the enrolment rate was 87%, and 75% of participants took part in ≥5/6 sessions. AYAs reported high benefit and low burden of participation. Overall, 95 online group sessions were conducted; few required rescheduling by group facilitators (3%), but many took place outside of office hours (~90 hours). It took 40 days on average to create online groups, but established weekly sessions commenced quickly (M = 4.0 minutes). Technological difficulties were common but had a low impact on intervention delivery. Although 54% of AYAs returned a clinically concerning distress screen at some point, none reflected acute mental health risks. CONCLUSIONS: The data largely indicate that Recapture Life is an acceptable, feasible, and safe model of evidence-based psychological support for AYAs during early survivorship, which nevertheless experienced common challenges in online/AYA intervention delivery.


Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Qualidade de Vida/psicologia , Sobrevivência , Comunicação por Videoconferência , Adaptação Psicológica , Adolescente , Aconselhamento , Estudos de Viabilidade , Feminino , Humanos , Masculino , Atenção Plena , Grupo Associado , Adulto Jovem
20.
Psychooncology ; 27(12): 2709-2716, 2018 12.
Artigo em Inglês | MEDLINE | ID: mdl-30109738

RESUMO

OBJECTIVE: Identity formation is a key developmental milestone for adolescents and young adults (AYAs). Autobiographical memory and future-thinking are crucial cognitive processes underpinning this, which may be impacted by cancer experiences. We know little about how these processes might be related to AYAs' adjustment to cancer, quality of life (QoL), and mental health outcomes. METHODS: We examined autobiographical memory and future-thinking processes, and their relationship with mental health outcomes, among 77 AYA cancer survivors (Mage  = 22.3 years, 59.7% female), compared with 62 community-based controls (Mage  = 23.3 years, 50% female). Participants completed the Life Narratives Interview, Future Imaginings Task, measures assessing depression, anxiety, QoL, and cancer-related identity. We coded two facets of autobiographical thinking: thematic content and specificity. RESULTS: Relative to controls, survivors recounted more negative life narratives (P = .000). Survivors' memories and future lives were more health/illness-focused (P = .000) and they remembered past events with greater specificity (P = .007) than controls. In contrast, survivors imagined their future lives with less specificity than controls (P = .000). Regression analyses highlighted that being female, greater identification as a "cancer survivor," worse depression, and recent cancer treatment-completion significantly predicted maladaptive autobiographical thinking processes. CONCLUSIONS: These findings point to key modifiable cognitive processes relevant to AYAs' cancer-related adjustment and future mental health. To bolster resilience into longer-term survivorship, clinicians could adapt existing evidence-based, cognitive-behavioural interventions to assist AYAs to imagine future events in greater detail.


Assuntos
Sobreviventes de Câncer/psicologia , Memória Episódica , Saúde Mental , Neoplasias/psicologia , Qualidade de Vida/psicologia , Adolescente , Ansiedade/psicologia , Depressão/psicologia , Feminino , Humanos , Masculino , Rememoração Mental , Narração , Adulto Jovem
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