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1.
Psychooncology ; 33(4): e6339, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38653573

RESUMO

BACKGROUND: Fear of progression (FOP) is a common and significant concern among cancer patients, encompassing worries about cancer progression during active treatment. Elevated levels of FOP can be dysfunctional. This study aims to assess the efficacy of an Acceptance and Commitment Therapy (ACT)-based intervention on FOP, anxiety sensitivity (AS), and quality of life (QOL) in breast cancer patients. METHODS: A clinical trial was conducted involving 80 stage I-III active-treatment breast cancer patients with a score greater than 34 on the Fear of Progression Questionnaire-Short Form scale. These patients were randomly assigned in a 1:1 ratio to either an intervention group, which received weekly 70-min sessions of 5-ACT-bsed group-therapy, or a control group that received usual treatment. Variables including FOP, AS, QOL, and ACT-related factors were assessed using ASQ, QLQ-C30, Cognitive Fusion Questionnaire, and Acceptance and Action Questionnaire-II at three time points: baseline, post-intervention, and 3-month follow-up. The efficacy of the intervention was evaluated using mixed model analysis across all time-points. RESULTS: The fidelity and acceptability of the ACT-based manual were confirmed using significant methods. A significant reduction in FOP was observed only in the ACT group at post-intervention (P-valueACT < 0.001; Cohen dACT = 1.099). Furthermore, the ACT group demonstrated a more significant reduction in FOP at follow-up. Furthermore, all secondary and ACT-related variables, except for the physical symptoms subscale, showed significant improvement in the ACT group compared to the control group. CONCLUSIONS: Our ACT-based manual showed promise for reducing FOP, AS, and improving QOL, and ACT-related variables in breast cancer patients 3 months following the intervention.


Assuntos
Terapia de Aceitação e Compromisso , Ansiedade , Neoplasias da Mama , Progressão da Doença , Medo , Psicoterapia de Grupo , Qualidade de Vida , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Terapia de Aceitação e Compromisso/métodos , Qualidade de Vida/psicologia , Pessoa de Meia-Idade , Medo/psicologia , Ansiedade/terapia , Ansiedade/psicologia , Psicoterapia de Grupo/métodos , Adulto , Inquéritos e Questionários , Idoso , Resultado do Tratamento
2.
Psychooncology ; 32(7): 1130-1141, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37204312

RESUMO

OBJECTIVE: To evaluate the psychometric properties of the Perceptions of Parental Illness Questionnaire for Cancer (PPIQ-C) among adolescents and young adults (AYAs). METHODS: A sample of 372 AYAs (aged 12-24 years) who had a parent diagnosed with cancer completed the PPIQ-C and the Kessler Psychological Distress Scale (K10). Exploratory factor analyses were conducted to examine the dimensional structure of the PPIQ-C. Scale reliability was evaluated using Cronbach's alpha (α) and McDonald's omega (ω). Pearson correlation analyses were conducted to assess construct validity by examining correlations between PPIQ-C subscale scores and K10 total scores. RESULTS: The PPIQ-C is organised into three sections, each with a separate factor structure for items representing identity, core (emotional representations, coherence, timeline, consequences, and controllability), and cause dimensions of the Common-Sense Model of Self-Regulation. Exploratory factor analyses determined the structure of each section: identity items comprised two subscales (12 items), core items comprised 10 subscales (38 items), and cause items comprised three subscales (11 items). Scale reliability was acceptable for all subscales, except the cause subscale chance or luck attributions (α = 0.665). Correlations between PPIQ-C subscale scores and K10 total scores provided support for construct validity. CONCLUSIONS: Preliminary evidence suggests that the PPIQ-C is a reliable, valid, and useful tool for assessing illness perceptions among AYAs with a parent with cancer. The PPIQ-C may be a useful addition to both clinical practice and future research, however further evaluation work is needed to confirm its structure and robustness prior to use.


Assuntos
Neoplasias , Adolescente , Adulto Jovem , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Neoplasias/psicologia , Pais
3.
Psychooncology ; 31(9): 1448-1458, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35734846

RESUMO

OBJECTIVE: Most adolescents and young adults (AYA) can expect to survive a cancer diagnosis and treatment, but all will be left with the potential of long-term negative effects that can impact their ability to reach their full potential in life. Understanding aspects of psychological, functional, and social health and well-being outcomes, is pivotal for optimising long-term well-being. METHODS: We completed a systematic review of longitudinal studies reporting outcomes after anti-cancer treatment for Adolescents and Young Adults diagnosed between the age of 12-29 years according to established systematic review processes. The protocol was registered with PROSPERO (ID: CRD 42020203116). RESULTS: Thirteen reports from 10 studies met eligibility criteria representing 17,645 individuals (50.3% female, mean age at diagnosis 22 years, and 26 years at last, follow up). Eleven reports were from eight quantitative studies that relied on self-report surveys and two were qualitative studies. Psychological outcomes were reported to improve over time, as were functional health outcomes, although reported health behaviours were inconsistent between studies. Neurocognitive deficits were reported to affect the ability to return to work and impacts on fertility and sexuality were sustained over time. CONCLUSIONS: While some outcomes for AYA are reported to improve over time, particularly for physical functioning, and anxiety and depression, the long-term impact of cancer on many important domains remains largely unknown. Specifically, the evidence to understand what changes occur over time, and when, remains underdeveloped.


Assuntos
Sobreviventes de Câncer , Neoplasias , Adolescente , Adulto , Ansiedade/psicologia , Sobreviventes de Câncer/psicologia , Criança , Feminino , Humanos , Estudos Longitudinais , Masculino , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida/psicologia , Inquéritos e Questionários , Adulto Jovem
4.
Support Care Cancer ; 30(1): 145-155, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34241699

RESUMO

PURPOSE: Given the large number of adolescents and young adults (AYAs) impacted by parental cancer and the potential for negative psychosocial outcomes in this vulnerable population, this study examined the mediating role of offspring unmet needs with regard to parental cancer and the relation between AYAs psychosocial adjustment and perceived illness unpredictability. METHODS: A total of 113 AYAs (aged 11-24 years) living with a parent diagnosed with cancer completed a questionnaire assessing illness unpredictability, offspring unmet needs, and psychosocial adjustment (i.e., health-related quality of life and internalizing problems). RESULTS: Higher offspring unmet needs were associated with lower health-related quality of life (r = -0.24**) and higher internalizing problems (r = 0.21*). Offspring unmet needs mediated the relation between illness unpredictability and health-related quality of life (standardized indirect effect = -0.100* [-0.183, -0.018]) but not internalizing problems (standardized indirect effect = 0.067 [-0.015, 0.148]). In particular, higher illness unpredictability was related to higher unmet needs (ß = 0.351**) which, in turn, predicted lower health-related quality of life (ß = -0.286**). CONCLUSION: These findings identify offspring unmet needs and illness unpredictability as implicated in AYAs positive psychosocial adjustment to parental cancer. Given that AYAs are at greater risk of elevated psychosocial difficulties, interventions should target offspring unmet needs and perception of illness unpredictability to mitigate the adverse effects of parental cancer.


Assuntos
Neoplasias , Qualidade de Vida , Adolescente , Necessidades e Demandas de Serviços de Saúde , Humanos , Neoplasias/terapia , Pais , Inquéritos e Questionários , Adulto Jovem
5.
Support Care Cancer ; 30(5): 3655-3659, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-34993650

RESUMO

Not monitoring adherence to oral anticancer therapies (OAT) can lead to poor clinical outcomes, including premature death as reported by Foulon et al. (Acta Clin Belg 66(2):85-96, 2011) and Greer et al. (Oncologist 21(3):354-76, 2016). Barriers to the implementation of supportive cancer care interventions in medication adherence occur with multiple hospital sites, cancer diagnoses, and numerous healthcare professionals. This commentary describes challenges and strategies from two OAT adherence trials in Australia and Switzerland to assist researchers in the design and implementation of future interprofessional trials.


Assuntos
Adesão à Medicação , Neoplasias , Administração Oral , Austrália , Pessoal de Saúde , Humanos , Neoplasias/tratamento farmacológico , Suíça
6.
Health Expect ; 25(6): 3215-3224, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36307993

RESUMO

BACKGROUND: Consumer engagement in health care is recognized as a critical strategy to minimize healthcare-associated harms, however, little research has focussed on strategies to engage young people in healthcare safety. This study explores the suitability of commonly used engagement strategies, such as brochures, interactive bedside charts or apps, for young people (14-25 years) to improve their healthcare safety, with a focus on cancer care. METHODS: Four qualitative online workshops were conducted (N = 19). Two workshops included young people who had experienced cancer (n = 6) and two workshops included staff who support young people who had experienced a diagnosis of cancer (n = 12). Evidence from a systematic review was used to develop case studies of existing strategies as a topic guide for the online workshops. Data were analysed using a framework method and template analysis approach. RESULTS: Thematic analysis against the analytic framework led to the development of four principles for engagement with young people: empowerment, transparency, participatory culture and flexibility. The transition from being 'looked after' to young people being responsible for their own care was an integrative theme which intersected all elements of the framework. CONCLUSION: For service providers to engage with young people about safety issues in cancer services, the strategies employed need to be tailored to consider the transitional nature of being an adolescent or young adult. A systemic approach that incorporates flexible, tailored engagement strategies, education and empowerment of young people and healthcare providers is required to engage effectively with young people about safety in healthcare. These findings may have implications beyond cancer care. PATIENT OR PUBLIC CONTRIBUTION: Workshop content was developed with and by the CanEngage team, including the Consumer Advisory Group, who reviewed content and inform wider project priorities.


Assuntos
Atenção à Saúde , Serviços de Saúde , Adulto Jovem , Adolescente , Humanos , Projetos de Pesquisa , Instalações de Saúde
7.
Psychooncology ; 30(11): 1849-1858, 2021 11.
Artigo em Inglês | MEDLINE | ID: mdl-34160847

RESUMO

OBJECTIVE: Adolescents and young adults (AYAs) diagnosed with cancer commonly experience elevated psychological distress and need appropriate detection and management of the psychosocial impact of their illness and treatment. This paper describes the multinational validation of the Distress Thermometer (DT) for AYAs recently diagnosed with cancer and the relationship between distress and patient concerns on the AYA-Needs Assessment (AYA-NA). METHODS: AYA patients (N = 288; 15-29 years, Mage  = 21.5 years, SDage  = 3.8) from Australia (n = 111), Canada (n = 67), the UK (n = 85) and the USA (n = 25) completed the DT, AYA-NA, Hospital Anxiety Depression Scale (HADS) and demographic measures within 3 months of diagnosis. Using the HADS as a criterion, receiver operating characteristics analysis was used to determine the optimal cut-off score and meet the acceptable level of 0.70 for sensitivity and specificity. Correlations between the DT and HADS scores, prevalence of distress and AYA-NA scores were reported. RESULTS: The DT correlated strongly with the HADS-Total, providing construct validity evidence (r = 0.65, p < 0.001). A score of 5 resulted in the best clinical screening cut-off on the DT (sensitivity = 82%, specificity = 75%, Youden Index = 0.57). Forty-two percent of AYAs scored at or above 5. 'Loss of meaning or purpose' was the AYA-NA item most likely to differentiate distressed AYAs. CONCLUSIONS: The DT is a valid distress screening instrument for AYAs with cancer. The AYA-POST (DT and AYA-NA) provides clinicians with a critical tool to assess the psychosocial well-being of this group, allowing for the provision of personalised support and care responsive to individuals' specific needs and concerns.


Assuntos
Neoplasias , Psico-Oncologia , Adolescente , Adulto , Ansiedade/diagnóstico , Ansiedade/epidemiologia , Pré-Escolar , Humanos , Programas de Rastreamento , Neoplasias/psicologia , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adulto Jovem
8.
Eur J Cancer Care (Engl) ; 30(1): e13348, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-33084134

RESUMO

OBJECTIVE: The purpose of this study was to examine how cancer-related fertility concerns impact on couple relationships from the perspectives of people with cancer (PWC) and partners of people with cancer. METHODS: A qualitative research design was used, drawing data from open-ended responses to a survey and in-depth individual interviews. Eight hundred and seventy-eight PWC (693 women, 185 men) and 144 partners (82 women, 62 men), across a range of tumour types and age groups, completed a survey, and 78 PWC (61 women and 17 men) and 26 partners (13 women and 13 men), participated in semi-structured interviews. RESULTS: Thematic analysis identified that many PWC and partners experience a 'double burden', manifested by cancer-related fertility concerns creating relational stress, changes to couple sexual intimacy and feelings of inadequacy when forming new relationships. However, many participants adopted strategies to facilitate coping with infertility or fertility concerns. This included acceptance of infertility and privileging of survival, focusing on relationship growth, optimism and nurturing in other ways. CONCLUSION: Cancer-related fertility concerns can have a significant impact on couple relationships. Psychological support from clinicians may facilitate couple coping, as well as help to address concerns about future relationships for un-partnered people with cancer.


Assuntos
Infertilidade , Neoplasias , Feminino , Fertilidade , Humanos , Masculino , Comportamento Sexual , Parceiros Sexuais
9.
BMC Palliat Care ; 20(1): 64, 2021 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-33926449

RESUMO

BACKGROUND: Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief - a 3-day camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. METHODS: One hundred and nine Australian AYAs (68% female; age: 12-25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program's conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. RESULTS: Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. CONCLUSIONS: Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.


Assuntos
Luto , Neoplasias , Adolescente , Adulto , Austrália , Criança , Feminino , Pesar , Humanos , Masculino , Pais , Adulto Jovem
10.
Scand J Caring Sci ; 35(1): 3-19, 2021 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-32004398

RESUMO

Although illness perceptions have significant implications for psychological morbidity in those diagnosed with a physical illness, the strength of this relationship in their family members remains understudied. The validity of findings is dependent on the quality of the instruments used; therefore, it is essential that psychometrically robust measures of illness perceptions are available. The purpose of this systematic review was to identify, assess and compare the psychometric properties of instruments designed to measure illness perceptions in family members of individuals with chronic physical illnesses. A systematic search was conducted using MEDLINE, PubMed, CINAHL, Scopus and PsycINFO databases, and supplemented with forward and backward searches. Studies were included in the review if they described the development, adaptation or psychometric evaluation of an instrument designed to measure illness perceptions in family members of an individual with a chronic physical illness. The methodological quality of included studies was assessed using the COSMIN Risk of Bias checklist. The psychometric quality of instruments was evaluated using published quality assessment criteria. Eleven articles describing nine different instruments were included in the review. Almost all instruments were designed for parents of a child with a chronic illness. There was wide variation in the quality of methods used to develop, adapt or evaluate the instruments, and missing information restricted the evaluation of psychometric properties. Further validation is needed for all instruments before meaningful conclusions can be drawn. Findings indicate that measurement of illness perceptions in children or siblings of an individual with a chronic physical illness has been largely ignored. Future research addressing this gap would be an important addition to the current body of work examining illness perceptions in family members.


Assuntos
Lista de Checagem , Família , Criança , Doença Crônica , Humanos , Percepção , Psicometria
11.
Health Promot J Austr ; 32(1): 39-45, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31821672

RESUMO

ISSUE ADDRESSED: Given the increasing prevalence of cancer, there is a growing need for health interventions educating individuals about the disease and its impacts, risk-reduction strategies and how to support others who are affected. School-based programs are a promising medium addressing these issues in adolescents, yet no comprehensive cancer education program exists in Australia. This paper reports on the piloting of a cancer awareness program for Australian students. METHODS: When Cancer Comes Along is a 90-minute interactive presentation covering cancer's impacts, risk-reduction strategies and how to support those affected. The program was piloted in four Australian secondary schools, with students (N = 113, 13-16 years) and teachers (N = 2) providing feedback via postprogram survey. RESULTS: Participants reported high satisfaction overall (92%-97%) and with each program component (71%-95%), and agreed that the program achieved learning outcomes (72%-95%). CONCLUSIONS: Results indicate that When Cancer Comes Along is relevant, engaging and age-appropriate. Participants reported improved understanding of cancer, its impacts, risk-reduction strategies and how to support those affected. A larger-scale evaluation is underway to more comprehensively evaluate program outcomes. SO WHAT?: The program has potential in educating students about various aspects of the cancer experience. It further demonstrates the feasibility and value of addressing psychosocial impacts and support strategies as well as information about cancer risks, elements which have not previously been combined in educational interventions. Equipping adolescents with the knowledge and skills to reduce their cancer risk and support others who are affected has significant health promotion implications for cancer prevention and support provision.


Assuntos
Educação em Saúde , Neoplasias , Adolescente , Austrália , Humanos , Avaliação de Programas e Projetos de Saúde , Instituições Acadêmicas , Estudantes
12.
Psychooncology ; 29(3): 517-524, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-31733016

RESUMO

OBJECTIVE: Breast cancer (BC) accounts for 24% of female cancers, with approximately one quarter of women likely to have offspring aged less than 25 years. Recent publications demonstrate negative psychosocial well-being in these offspring. We prospectively assessed for psychological distress and unmet needs in offspring of BC patients. METHODS: Eligible offspring aged 14 to 24 years were consented and completed the Kessler-10 Questionnaire and Offspring Cancer Needs Instrument. Demographic and BC details were obtained. RESULTS: Over a 7-month period, 120 offspring from 74 BC patients were included. Fifty-nine mothers had nonmetastatic BC (nMBC), and 27 had metastatic BC (MBC) with median time from diagnosis of 27.6 and 36.1 months, respectively. The prevalence of high/very high distress was 31%, with significantly higher scores reported by female offspring (P = .017). Unmet needs were reported by more than 50% of offspring with the majority of needs relating to information about their mother's cancer. Greater unmet needs were seen in female offspring and offspring with none or one sibling for several domains (practical assistance, time-out, dealing with feelings, and support from friends; P < .05). Greater unmet needs were seen in regard to feelings for MBC patients' offspring compared with nMBC but were similar for other unmet needs. CONCLUSIONS: Our study confirms high levels of psychological distress in offspring of BC patients, with female offspring reporting significantly higher emotional distress and unmet needs. More than 50% of respondents reported unmet needs in areas that can potentially be supported, including greater information provision, improving practical issues, and enabling sufficient recreational time.


Assuntos
Ansiedade/psicologia , Neoplasias da Mama/psicologia , Relações Mãe-Filho , Adaptação Psicológica , Adolescente , Adulto , Emoções , Feminino , Necessidades e Demandas de Serviços de Saúde , Humanos , Irmãos/psicologia , Apoio Social , Estresse Psicológico/psicologia , Inquéritos e Questionários , Adulto Jovem
13.
Support Care Cancer ; 28(9): 4043-4050, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32335731

RESUMO

PURPOSE: Adherence to oral antineoplastic drugs is a complex phenomenon, and knowledge about the reasons that people with cancer do not adhere to their prescriptions is essential to inform adherence-related support in clinical and research contexts. This study aims to provide an up-to-date summary of the key reasons for non-adherence to oral antineoplatic drugs (OAD) in people with cancer. METHODS: Electronic databases Medline, Embase, Emcare, and PsychINFO were searched for systematic reviews and studies published between January 2010 and March 2018. Data was analyzed and extracted by two independent reviewers. RESULTS: Three systematic reviews and two studies were included in the review. Key factors for non-adherence were classified as either modifiable or non-modifiable factors. Side effects, forgetfulness, and poor knowledge about OAD were identified as modifiable factors while co-payment, age, regimen complexity. and time since diagnosis were identified as non-modifiable factors. Most of the included studies focused on breast cancer and chronic myeloid leukemia (CML) patients. Low methodological quality and different adherence cut-off rates were observed in the included literature. CONCLUSIONS: More research with rigorous methodology and diverse cancer types is needed to increase evidence on the reasons for OAD non-adherence. However, findings from this study may serve to aid in drafting guidelines and suitable interventions for adherence-related support to OAD users.


Assuntos
Antineoplásicos/uso terapêutico , Adesão à Medicação/estatística & dados numéricos , Neoplasias/tratamento farmacológico , Antineoplásicos/farmacologia , Humanos
14.
Support Care Cancer ; 28(4): 1631-1638, 2020 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-31280364

RESUMO

PURPOSE: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress. METHODS: In total, 278 bereaved offspring and 38 bereaved siblings (12-25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10). RESULTS: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0-58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0-57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for "support from other young people" and "time out and recreation" were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups. CONCLUSIONS: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.


Assuntos
Luto , Família/psicologia , Neoplasias/psicologia , Adolescente , Criança , Feminino , Humanos , Masculino , Transtornos Mentais/etiologia , Transtornos Mentais/psicologia , Transtornos Mentais/terapia , Avaliação das Necessidades , Pais/psicologia , Irmãos/psicologia , Apoio Social , Adulto Jovem
15.
Support Care Cancer ; 28(8): 3637-3648, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31811484

RESUMO

OBJECTIVE: This study aimed to validate the Bereaved Cancer Needs Instrument (BCNI), an instrument designed to assess the unmet psychosocial needs of adolescents and young adults (AYAs, 12-25 years) who have experienced the death of a parent or sibling to cancer. METHODS: In total, 335 participants aged 12 to 25 (M = 15.80, SD = 3.32) who had experienced the death of a parent (N = 297) or sibling (N = 38) from cancer took part in this study. Participants completed the BCNI, the Kessler-10 psychological distress scale (K10), and several items assessing the acceptability of the BCNI. RESULTS: Exploratory factor analysis indicated that a seven-factor structure best fit the BCNI, accounting for 56.65% of the variance in unmet psychosocial needs of cancer-bereaved AYAs. The measure had good psychometric properties, high levels of internal consistency for all domains, and correlated strongly with the K10 (r = .59, p < .001). Item response theory analysis demonstrated that the response scale was appropriate, with strong discrimination indices. Analyses also indicated the potential to reduce the BCNI from 58 items to a 37-item short-form, although this will require further validation. CONCLUSIONS: The BCNI is the first psychometrically validated instrument to identify the unmet psychosocial needs of bereaved AYAs who have experienced the death of a parent or sibling to cancer. The instrument can be used in research and health care settings to identify the unmet needs of young people bereaved by cancer and provide targeted support to reduce psychological distress.


Assuntos
Luto , Necessidades e Demandas de Serviços de Saúde , Neoplasias/psicologia , Psicometria/métodos , Adolescente , Adulto , Criança , Análise Fatorial , Feminino , Pesar , Humanos , Masculino , Pais/psicologia , Irmãos/psicologia , Apoio Social , Inquéritos e Questionários , Adulto Jovem
16.
J Psychosoc Oncol ; 38(2): 195-209, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31608828

RESUMO

Purpose: This study examined Adolescent and Young Adult (AYA) cancer patients' experiences with friends and cancer friends (peers) throughout their cancer journey.Research approach: Qualitative, thematic analysis.Participants: Twelve AYA diagnosed with cancer, treated within the past five years.Methodological approach: Individual semi-structured interviews, focusing on friend and peer experiences pre-/post-diagnosis, during and after treatment.Findings: Overarching themes of 'valued' vs. 'challenging' aspects with friends and peers.Interpretation: Friend and peer relationships were both valuable, but in different ways. Friends provided general support and helped AYA feel like a normal teenager, while peers provided targeted support and helped AYA feel like a normal teenager with cancer. Peers had an intimate understanding of cancer, whereas poor understanding by friends led to further challenges such as avoidance and being dismissive. Peer relations were notably challenged by a premature confrontation with mortality. Friendships evolved and changed throughout the cancer journey.


Assuntos
Amigos/psicologia , Relações Interpessoais , Neoplasias/terapia , Grupo Associado , Adolescente , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Adulto Jovem
17.
Psychooncology ; 28(12): 2323-2335, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31709669

RESUMO

OBJECTIVE: Parents with cancer want information about maintaining family functioning despite cancer. This scoping review assesses what online information resources are available to help parents with cancer maintain family functioning, the quality of the available information, and whether resources provide specific advice for parents of adolescent and young adult (AYA) children. METHODS: To identify available relevant English-language online information resources, we imitated a parental online information search using three search engines (Google, Yahoo, and Bing). Online resources from the last 10 years for parents with cancer addressing family functioning were included. These resources were rated using the DISCERN instrument-a tool for rating the reliability and quality of health information resources. RESULTS: 684 results were screened and 33 online information resources from the USA, UK, Australia, Canada, and Ireland met the inclusion criteria. Average DISCERN quality was 54/80 (95% CI:50-58), which is typical for online health information. The highest rated resources provided information for parents on supporting their AYA children's needs for information and support with feelings, but few comprehensively covered other specific AYA needs. Details on resource weaknesses as identified by the DISCERN are presented. CONCLUSIONS: Several high-quality resources for parents with cancer were identified from multiple countries, allowing health professionals internationally to direct patients with cancer to relevant high quality online information. Highlighted limitations in resource quality and scope will guide future resource development and revision, ensuring more comprehensive high quality information is available to support families affected by parental cancer internationally.


Assuntos
Filhos Adultos/psicologia , Filho de Pais com Deficiência/psicologia , Informação de Saúde ao Consumidor , Internet , Neoplasias/psicologia , Poder Familiar/psicologia , Pais/psicologia , Adolescente , Adulto , Humanos , Adulto Jovem
18.
Psychooncology ; 28(7): 1408-1419, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-31108019

RESUMO

OBJECTIVE: Engaging in shared decision-making may be particularly difficult for adolescents and young adults with cancer (AYAs), possibly because of lower levels of health literacy. Family members of AYAs are likely to support decision-making about their healthcare by contributing to health literacy skills/practices; however, the nature of this process is unclear. This systematic review synthesized qualitative studies that explored the process of decision-making and characterized how AYA healthcare information is shared, from the perspective of the AYA and their family members. METHODS: Electronic searches of EMBASE, MEDLINE, PsycINFO, and CINAHL were conducted in May 2018. Peer-reviewed studies discussing the decision-making process in AYAs and/or their families were eligible for inclusion. Findings were analyzed thematically using Framework analysis. RESULTS: Seven thousand two hundred seventy-three studies were screened, and 14 eligible studies were included. The synthesized themes aligned with the Supported Health Literacy Pathway model3 in that AYAs draw on their family members' knowledge, skills, and practices to generate informed options and make shared decisions. Families of AYAs were found to be involved throughout all stages of decision-making. The use of health literacy skills was also found to be distributed in families, such that family members of AYAs mediate access to knowledge and use of health information in the decision-making process. CONCLUSIONS: Our findings suggest that health literacy is a dynamic and transactional process and provide clinicians, researchers, and other stakeholders with a framework to foster AYA engagement in decision-making.


Assuntos
Tomada de Decisões , Comportamentos Relacionados com a Saúde , Letramento em Saúde/métodos , Neoplasias/psicologia , Educação de Pacientes como Assunto/métodos , Adaptação Psicológica , Adolescente , Feminino , Humanos , Pesquisa Qualitativa , Adulto Jovem
19.
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.
Int J Behav Med ; 26(5): 531-541, 2019 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-31161590

RESUMO

BACKGROUND: Individuals construct beliefs about an illness based on their own perceptions, interpretation, and understanding of the illness and its treatment. These beliefs (collectively referred to as "illness cognitions" or "representations") can have implications for psychological outcomes in family members and carers of an individual with an illness. The aim of this study was to explore young people's perceptions of their parent's cancer using the Common-Sense Model of Self-Regulation as a theoretical framework. METHODS: Semi-structured, one-on-one interviews were conducted with young people who had a parent diagnosed with cancer. Interview transcripts were analysed using deductive thematic analysis techniques. RESULTS: Eleven young people aged 15-24 years participated in the study. Major themes aligned with the dimensions of the Common-Sense Model of Self-Regulation. Young people described their experiences with parental cancer with reference to cognitive representations (beliefs about the illness identity, their understanding or coherence of the illness, and consequences, curability or controllability, timeline, and cause of the illness) and emotional representations (emotional beliefs and subjective feelings about the illness). CONCLUSIONS: Findings indicate that young people's perceptions of their parent's cancer can be usefully described within the framework of the Common-Sense Model of Self-Regulation. Future research should investigate the relationships between young people's illness cognitions, coping strategies, and psychological adjustment following their parent's cancer diagnosis. This will provide valuable insights for the development of interventions that target specific types of illness cognitions associated with maladaptive coping strategies and poor adjustment.


Assuntos
Filho de Pais com Deficiência/psicologia , Cognição , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , Adolescente , Cuidadores/psicologia , Emoções , Família/psicologia , Feminino , Humanos , Masculino , Pesquisa Qualitativa , Adulto Jovem
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