RESUMO
OBJECTIVE: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG. METHODS: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable. RESULTS: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth. CONCLUSIONS: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.
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Sobreviventes de Câncer , Neoplasias , Crescimento Psicológico Pós-Traumático , Transtornos de Estresse Pós-Traumáticos , Humanos , Masculino , Criança , Feminino , Adulto Jovem , Adulto , Sobreviventes de Câncer/psicologia , Adaptação Psicológica , Suíça , Neoplasias/terapia , Neoplasias/psicologia , Pais/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologiaRESUMO
BACKGROUND: Advance care planning (ACP) describes the process of supporting individuals at any age or stage of health to consider and share their personal values, life goals, and preferences regarding future health care. Engaging in ACP is associated with better-quality of care in which people receive care in lines with their wishes, values and preferences. Direct translations of ACP guides and resources do not attend to the considerable inter- and intra-ethnic variations in cultural and religious or spiritual beliefs that shape preferences among people from culturally and linguistically diverse (CALD) backgrounds. ICanCarePlan is a three-year project that aims to determine the prevalence of ACP documentation among people from CALD backgrounds with cancer, identify resources available and their use to support ACP among CALD communities, identify barriers and facilitators of person-centred ACP, and to develop, through co-design with consumers and clinicians, approaches that enhance the process ACP for people from CALD backgrounds. METHOD: A mixed-method sequential approach will be used comprising of four studies. Study one is retrospective medical record review of approximately 1500 medical records to establish the prevalence of ACP documentation among CALD patient records in cancer services. Study two is a document analysis synthesising the resources available in the Australian health system to support ACP. Study three is a qualitative study with healthcare staff and consumers to explore barriers and enablers of person-centred ACP. Evidence generated from studies one to three will inform the conduct of co-design with stakeholders to develop approaches to improve ACP processes among CALD communities. Language, technical and financial support for meaningful involvement with consumers from CALD backgrounds throughout this project is outlined. A plan for distress management is also made due to sensitive nature of the topic. The research project has also established a project steering group consisting of three consumer members who are from CALD backgrounds. DISCUSSION: The project will address a national priority issue for a growing population of CALD communities in Australia. The project will provide novel evidence of ACP among CALD communities and novel strategies developed with stakeholders to enhance uptake and experiences of ACP.
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Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Planejamento Antecipado de Cuidados/tendências , Planejamento Antecipado de Cuidados/normas , Neoplasias/terapia , Diversidade Cultural , Austrália , Pesquisa Qualitativa , Estudos Retrospectivos , Feminino , MasculinoRESUMO
OBJECTIVES: To synthesize current evidence on the association between anticipatory anxiety, defined as apprehension-specific negative affect that may be experienced when exposed to potential threat or uncertainty, and cancer screening to better inform strategies to maximize participation rates. METHODS: Searches related to cancer screening and anxiety were conducted in seven electronic databases (APA PsycINFO, Scopus, Web of Science, Embase, Cochrane Library, PubMed, CINAHL), with potentially eligible papers screened in Covidence. Data extraction was conducted independently by multiple authors. Barriers to cancer screening for any type of cancer and relationships tested between anticipatory anxiety and cancer screening and intention were categorized and compared according to the form and target of anxiety and cancer types. RESULTS: A total of 74 articles (nparticipants = 119,990) were included, reporting 103 relationships tested between anticipatory anxiety and cancer screening and 13 instances where anticipatory anxiety was reported as a barrier to screening. Anticipatory anxiety related to a possible cancer diagnosis was often associated with increased screening, while general anxiety showed no consistent relationship. Negative relationships were often found between anxiety about the screening procedure and cancer screening. CONCLUSION: Anticipatory anxiety about a cancer diagnosis may promote screening participation, whereas a fear of the screening procedure could be a barrier. Public health messaging and primary prevention practitioners should acknowledge the appropriate risk of cancer, while engendering screening confidence and highlighting the safety and comfort of screening tests.
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Detecção Precoce de Câncer , Neoplasias , Humanos , Ansiedade/diagnóstico , Neoplasias/diagnóstico , IncertezaRESUMO
OBJECTIVES: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. METHOD: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. RESULTS: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%-76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family-based support (62%-73%). Psychological support was more frequently provided in the long-term management phase (78%) than early post-diagnosis/treatment (45%). System-level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor-specific training. CONCLUSIONS: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.
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Neoplasias Encefálicas , Pessoal de Saúde , Adulto , Austrália , Neoplasias Encefálicas/terapia , Família , Pessoal de Saúde/psicologia , Humanos , Assistentes SociaisRESUMO
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.
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Neoplasias , Navios , Feminino , Criança , Humanos , Adulto , Neoplasias/terapia , Neoplasias/psicologia , Pais/psicologia , Adaptação Psicológica , MãesRESUMO
INTRODUCTION AND HYPOTHESIS: Myofascial pain arising from pelvic floor muscles occurs in women with vaginismus, interstitial cystitis and endometriosis but is often overlooked. The aim is to examine alternative diagnostic tests to detect pelvic floor myofascial pain compared with standardized vaginal palpation of pelvic floor muscles as the reference test. METHODS: A systematic review was prospectively conducted (PROSPERO-CRD42020183092) according to PRISMA guidelines. Databases searched included Ovid Medline 1946-, Embase 1957-, Scopus 1960-, Cochrane Combined, Clinical trials, Google Scholar (top 200 articles), Web of Science, TRIP, BIOSIS, DARE, CINHAL, EmCare, PEDro, ProQuest and EBSCOhost up to July 2020. Articles were independently screened by two authors and assessed for bias using QUASDAS-2 tool. RESULTS: A total of 26,778 articles were screened and 177 were selected for full text review, of which 5 were selected for final analysis. Five studies included 9694 participants of which 1628 had pelvic floor myofascial pain. Only one study reported data to calculate sensitivities and specificities of the index test, which utilized a score of > 40 on the Central Sensitization Inventory to detect women with pelvic floor myofascial pain and revealed a sensitivity of 34.8% and a specificity of 84.9% compared to the reference test. CONCLUSIONS: This systematic review did not reveal any diagnostic test superior to the pre-defined reference test. There is a lack of consensus on the definition of pelvic floor myofascial pain and a lack of a validated diagnostic criteria which must be addressed to progress with meaningful research in this field.
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Endometriose , Síndromes da Dor Miofascial , Testes Diagnósticos de Rotina , Endometriose/diagnóstico , Feminino , Humanos , Síndromes da Dor Miofascial/diagnóstico , Dor , Diafragma da PelveRESUMO
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP.
Assuntos
Planejamento Antecipado de Cuidados , Adolescente , Criança , Comunicação , Família , Pessoal de Saúde , Humanos , PaisRESUMO
OBJECTIVES: Survivors of adolescent and young adult (AYA) cancer report deficits in social functioning relative to healthy peers. Identifying factors related to their social functioning is critical to improve their long-term social outcomes. This review addressed: (1) How is social functioning defined and measured among studies of AYAs who have had cancer? (2) What factors have quantitatively/qualitatively are associated with/predictors of social functioning? and (3) What associated factors/predictors of social functioning are modifiable and amenable to intervention? METHODS: A systematic review was conducted to identify publications from 2000 to 2021, meeting these criteria: (1) mean/median age at diagnosis/treatment 13-40, (2) assessed social functioning with a validated measure and included factors associated with/predictive of social functioning and/or qualitatively assessed young people's perceptions of factors related to their social functioning and (3) was peer-reviewed/published in English. RESULTS: Thirty-seven publications were included. Definitions and measures of social functioning varied, and factors related to social functioning varied based on definition. Factors most commonly associated with decreased social functioning included treatment status (receiving or completed treatment), poor physical functioning, depression, negative body image, engaging in social comparisons, social/cultural stigma around cancer, and fatigue. Increased social functioning was most commonly associated with social support and the quality/age-appropriateness of care. CONCLUSIONS: Social functioning is multidimensional construct for AYAs diagnosed with cancer and may not be adequately assessed with measures of adjustment or quality of life. Future studies should clarify how to optimally define and measure social functioning in this population, to ensure their functioning can be protected and promoted long-term.
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Neoplasias , Qualidade de Vida , Adolescente , Humanos , Neoplasias/terapia , Ajustamento Social , Interação Social , Apoio Social , Adulto JovemRESUMO
BACKGROUND: Parents of childhood cancer survivors may be vulnerable to experiencing poor health outcomes, but little is known about how these parents use healthcare. This study investigated the nature and extent of survivors' parents' healthcare and medication use relative to a comparison group. We also examined whether demographic or cancer-related factors were related to healthcare use and whether healthcare use was associated with parents' general functioning. METHODS: We conducted a cross-sectional study involving 55 parents of cancer survivors recruited through eight Australian hospitals, and 135 parents of children without a cancer diagnosis, through an online recruitment platform. Participants responded to a questionnaire assessing their health service usage, regular medications, general functioning (engagement activities including work/study) and anxiety and depression symptoms (using PROMIS short forms). We performed regression analysis to determine factors related to healthcare and medication use in parents of survivors. RESULTS: More parents of survivors reported accessing mental health services than comparison parents (56% vs. 33%, p=.003), mainly due to their use of social workers. Fewer parents of survivors reported accessing other community health services, particularly general practitioners (51% vs. 78%, p<.001). Having a child survivor who was male was associated with greater use of community health services (B= -0.67, p=.008). No other demographic or cancer-related variables were associated with health service use. Health service use was not associated with general functioning, but greater medication use was associated with higher anxiety scores (B = 1.41, p=.008). CONCLUSION: Parents of childhood cancer survivors showed different patterns of health service use relative to comparison parents, but the extent of their use was not significantly linked with demographic or cancer-related variables. Comprehensive assessment of parents' needs in clinical encounters remains vital to identify and appropriately match support needs with available services.
Assuntos
Sobreviventes de Câncer , Neoplasias , Austrália/epidemiologia , Criança , Estudos Transversais , Serviços de Saúde , Humanos , Masculino , Neoplasias/epidemiologia , PaisRESUMO
BACKGROUND: Family-based 'informal' caregivers are critical to enable sustainable cancer care that produces optimal health outcomes but also gives rise to psychological burdens on caregivers. Evidence of psychosocial support for caregivers does not currently address the impacts of their role in providing clinical and health-related care for their loved ones. The present study sought to address this gap including with those from priority populations. METHODS: Qualitative data was collected using focus group and interview methods. We purposively sampled caregivers identified as having a high burden of responsibility for providing clinical care including those from ethnic minority backgrounds, parental caregivers and those living rurally. Transcripts were subject to thematic analysis utilising a team-based approach. RESULTS: Family-based caregivers included spouses (11), parents (7), children (1), siblings (1). Ten participants were from ethnic minority backgrounds and five participants were from regional or rural locations. Four resulting inter-related themes were; 1) Dual burden of providing clinical care and managing personal emotional distress; 2) Navigating healthcare partnership dynamics; 3) Developing a caregiving skillset, and 4) Unique supportive needs and barriers to access. These data provide evidence of the unique challenge of providing clinical care as part of family-based caregiving for a loved one with cancer, and the absence of support for caregivers to take up this role. CONCLUSION: Our findings highlight the substantial contribution of family-based caregivers to the provision of cancer care in contemporary health systems. Inadequate support for caregivers is apparent with regard to their role in providing clinical aspects of care such as medication administration and management. Support programs to prepare caregivers to provide clinical care while building capacity to manage their stressors and emotions through this challenging period may be valuable towards sustainable, person-centred care.
Assuntos
Cuidadores , Neoplasias , Criança , Etnicidade , Família , Humanos , Grupos Minoritários , Neoplasias/terapia , PaisRESUMO
OBJECTIVE: Cognitive-behavioural models suggest that vicarious illness experiences precipitate health anxiety; however, this assumption is largely untested. This study aimed to (a) compare the severity of health anxiety and rates of clinical health anxiety, Illness Anxiety Disorder (IAD), and Somatic Symptom Disorder (SSD) in participants with and without a loved one with cancer, and (b) determine the predictors of health anxiety severity in participants with vicarious cancer experiences. METHODS: Participants with (n = 142) and without (n = 65) vicarious cancer experiences completed an online battery of questionnaires assessing the severity and cognitive, physiological, and behavioural components of health anxiety. Participants reporting clinical levels of health anxiety completed a diagnostic telephone interview to assess for IAD and SSD. RESULTS: Severity and rates of clinical health anxiety, IAD, and SSD did not differ between groups. Participants with a vicarious experience of cancer reported elevated fear of cancer recurrence regarding their loved one's illness, however only 15.8% reported clinically significant health anxiety. Hierarchical regression revealed that in participants with vicarious cancer experiences, less relationship closeness and greater perceived risk of cancer, severity of somatic symptoms, bodily hypervigilance, and catastrophic interpretation of symptoms predicted health anxiety. Being a caregiver for or genetically related to the person with cancer, the expectedness of the cancer diagnosis, and whether the loved one died from cancer were not significant predictors. CONCLUSIONS: These results suggest that people reporting vicarious cancer experiences do not have elevated rates of health anxiety. However, how these individuals interpret their experiences influences health anxiety severity.
Assuntos
Ansiedade/psicologia , Cuidadores/psicologia , Sintomas Inexplicáveis , Neoplasias/psicologia , Atividades Cotidianas , Adaptação Psicológica , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/reabilitação , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Childhood cancer can have short- and long-term impacts on parents' finances and employment. It is important to understand how families adjust to the financial and employment changes caused by childhood cancer, the ongoing impacts after treatment completion, and which families need more targeted support. Qualitative research is necessary to facilitate an in-depth understanding of the employment and financial impacts on families and to capture parents' complex and nuanced experiences and perspectives. METHODS: We interviewed 56 parents of childhood cancer survivors (M = 2.13 years after treatment completion; 89% mothers) using the vocational and financial impact section of the Psychosocial Adjustment to Illness Scale-Carer Interview Form. We analyzed interviews using content analysis. RESULTS: Parents reported multiple sources of financial toxicity including travel to and from the hospital and needing to reduce their working hours during their child's cancer treatment. Workplace flexibility was an important factor to protect against unwanted vocational changes. After treatment completion, families living in low socioeconomic areas commonly reported ongoing financial difficulties. Mothers, particularly those who were on maternity leave when their child was diagnosed with cancer, reported ongoing employment impacts including unemployment. CONCLUSIONS: Clinical staff including social workers could more consistently assess families' financial distress and refer to professional services who can offer guidance for financial decision-making as standard care. Flexible workplace agreements appear important for parents of children with cancer. Our findings can assist organizations to understand that cancer-related disruptions are likely to continue after treatment completion, and therefore should offer benefits to parents where possible.
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Efeitos Psicossociais da Doença , Emprego/estatística & dados numéricos , Neoplasias/economia , Neoplasias/enfermagem , Pais/psicologia , Retorno ao Trabalho/psicologia , Adulto , Criança , Pré-Escolar , Conflito Psicológico , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/terapia , Prognóstico , Pesquisa Qualitativa , Estudos Retrospectivos , Fatores Socioeconômicos , Adulto JovemRESUMO
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.
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Neoplasias/psicologia , Relações Profissional-Família/ética , Adulto , Pré-Escolar , Comunicação , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto JovemRESUMO
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 JovemRESUMO
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.
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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 JovemRESUMO
Poor body image may be one driver of distress for adolescent and young adults (AYAs) after cancer. We explored physical appearance changes reported by AYA cancer survivors to understand impacts on body image, distress, lifestyle and health behaviours. We recruited AYAs (15-25 years) who had completed cancer treatment. Using semi-structured interviews, we asked participants about appearance changes resulting from their cancer. We used iterative thematic analyses to explain experiences. Forty-three participants (51% male, mean age = 21 years) completed an interview. Two key themes emerged. Participants discussed physical appearance changes and psychosocial impacts including appraisal of their changed appearance. Thirty-eight participants (n = 38/43) reported that their cancer and/or treatment changed their appearance (most commonly: alopecia [n = 15/43], scarring [n = 14/43] and weight gain [n = 11/43]). Ten participants (n = 10/43) acknowledged body dissatisfaction. Other impacts included feeling a loss of identity, not being recognised by peers and feeling helpless to change. Our results have translational significance for AYA care. Body image concerns should be considered a potential barrier to successful reintegration post-treatment. AYAs may benefit from familial and peer support, healthy lifestyle interventions and clinical environments catering to appearance-related sensitivities.
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Imagem Corporal/psicologia , Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Aparência Física , Adolescente , Adulto , Austrália , Emoções , Feminino , Humanos , Masculino , Neoplasias/terapia , Sobrepeso/psicologia , Adulto JovemRESUMO
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.
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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 JovemRESUMO
OBJECTIVE: Cancer in adolescents and young adults (AYAs) can interrupt important developmental milestones. Absence from school and time lost from work, together with the physical impacts of treatment on energy and cognition, can disrupt educational and vocational goals. The purpose of this paper is to report on AYA cancer survivors' experiences of reintegration into school and/or work and to describe perceived changes in their educational and vocational goals. METHODS: Adolescents and young adults recruited from 7 hospitals in Australia, aged 15 to 26 years and ≤24 months posttreatment, were interviewed using the psychosocial adjustment to illness scale. Responses were analysed to determine the extent of, and explanations for, cancer's effect on school/work. RESULTS: Forty-two AYA cancer survivors (50% female) participated. Compared with their previous vocational functioning, 12 (28.6%) were scored as experiencing mild impairment, 14 (33.3%) moderate impairment, and 3 (7.1%) marked impairment. Adolescents and young adults described difficulties reintegrating to school/work as a result of cognitive impacts such as concentration problems and physical impacts of their treatment, including fatigue. Despite these reported difficulties, the majority indicated that their vocation goals were of equal or greater importance than before diagnosis (26/42; 62%), and most AYAs did not see their performance as compromised (23/42; 55%). Many survivors described a positive shift in life goals and priorities. The theme of goal conflict emerged where AYAs reported compromised abilities to achieve their goals. CONCLUSIONS: The physical and cognitive impacts of treatment can make returning to school/work challenging for AYA cancer survivors. Adolescents and young adults experiencing difficulties may benefit from additional supports to facilitate meaningful engagement with their chosen educational/vocational goals.
Assuntos
Sobreviventes de Câncer/psicologia , Neoplasias/psicologia , Qualidade de Vida , Retorno ao Trabalho/psicologia , Adolescente , Austrália , Feminino , Humanos , Masculino , Neoplasias/terapia , Ocupações , Adulto JovemRESUMO
PURPOSE: The aim of this study was to evaluate the feasibility and acceptability of "Cascade": an online, group-based, cognitive behavioral therapy intervention, delivered "live" by a psychologist, to assist parents of children who have completed cancer treatment. METHODS: Forty-seven parents were randomized to Cascade (n = 25) or a 6-month waitlist (n = 22). Parents completed questionnaires at baseline, 1-2 weeks and 6 months post-intervention. Thirty parents completed full evaluations of the Cascade program (n = 21 randomized to Cascade, n = 9 completed Cascade post-waitlist). RESULTS: Ninety-six percent of Cascade participants completed the intervention (n = 24/25). Eighty percent of parents completed every questionnaire (mean completion time 25 min (SD = 12)). Cascade was described as at least "somewhat" helpful by all parents. None rated Cascade as "very/quite" burdensome. Parents reported that the "online format was easy to use" (n = 28, 93.3 %), "I learnt new skills" (n = 28, 93.3 %), and "I enjoyed talking to others" (n = 29, 96.7 %). Peer-to-peer benefits were highlighted by good group cohesion scores. CONCLUSIONS: Cascade is highly acceptable and feasible. Its online delivery mechanism may address inequities in post-treatment support for parents, a particularly acute concern for rural/remote families. Future research needs to establish the efficacy of the intervention. TRIAL REGISTRATION: ACTRN12613000270718, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?ACTRN=12613000270718.