Health literacy, eHealth literacy and their association with burden, distress, and self-efficacy among cancer caregivers.

Purpose: Health literacy skills are vital for cancer caregivers in helping cancer survivors to navigate their diagnosis, treatment, and recovery but little is known. This study explored health literacy and eHealth literacy among cancer caregivers and the relationship between health literacy/eHealth literacy and potential associated factors. Methods: Informal caregivers who had cared for an individual with cancer completed a survey which collected demographic data and measured caregiver health literacy, eHealth literacy, self-efficacy, burden, and distress. Results: Seven percent of caregivers had inadequate health literacy. Caregivers scored lowest on health literacy domains related to caregiver social support, information seeking and understanding care recipient preferences. eHealth literacy was associated with self-efficacy and burden while, different health literacy domains were associated with burden ('Understanding care recipient needs and preferences'), self-efficacy ('Cancer-related communication with the care recipient' and 'Understanding care recipients needs and preferences') and distress ('Proactivity and determination to seek information', 'Understanding care recipient needs and preferences', 'Understanding the healthcare system'). Conclusion: Findings highlight key areas of need regarding cancer caregiver health literacy which future research can target. Given the observed relationship between aspects of health literacy and burden, distress and self-efficacy future work could be carried out on how to alleviate high levels of burden and distress and how to enhance self-efficacy among cancer caregivers by addressing health literacy skills. Implications for cancer survivors: Findings from this study will inform the development of health literacy interventions to support caregivers to build their health literacy skills and enable this group to better support cancer survivors as a result.

Body image and cancer-related lymphoedema: A systematic review.

OBJECTIVE: Cancer-related lymphoedema is a common side effect of cancer, affecting 24%-49% of people with cancer. Body image contributes to the well-being of individuals with this condition. This systematic review aimed to explore, for the first time, the state of the science concerning body image in cancer-related lymphoedema, including how body image is measured and variables associated with body image concerns. METHODS: Six databases were systematically searched for peer-reviewed articles describing empirical quantitative studies where body image was measured with a reliable and valid measurement tool in adults with cancer-related lymphoedema. RESULTS: Nine studies with 977 participants were included. The studies involved individuals who had experienced breast, head and neck, melanoma, and urogenital cancers and developed lymphoedema. There was considerable heterogeneity in body image measures used, precluding meta-analysis. The following variables were associated with increased body image concern: higher body integrity beliefs, experience of physical changes (e.g. pain) and differences in sensation and function, including changes in appearance related thoughts, feelings and emotions. Several studies described behavioural and psychological interventions which positively impacted body image outcomes in individuals with lymphoedema relating to specific cancers. CONCLUSION: Regular screening for body image concerns could encourage more positive body image awareness in individuals with cancer-related lymphoedema and lessen some of its associated negative consequences. Future longitudinal and individual differences research in this area is important to inform intervention development. There is also need for a more standardised approach to the study and measurement of body image in people with cancer-related lymphoedema.

Examining the Utility of Stress-, Motivation-, and Commitment-Based Perspectives of Athlete Burnout.

Burnout, characterized by exhaustion, reduced accomplishment, and devaluation, can have substantial negative implications for athletes. Notably, researchers continue to examine burnout from multiple perspectives, commonly focusing on stress-, motivation-, or commitment-related factors, with limited efforts to consider these perspectives together. In contrast, this study aimed to assess the utility of these multiple perspectives and the key predictors of burnout in the same athlete sample. Data on burnout, stress, motivation, motivational climate, and sport commitment were gathered from 370 Gaelic games athletes. Separate structural equation models incorporating stress, motivation, and commitment factors as predictors of burnout dimensions were assessed. All models showed adequate fit. However, differences in effect size suggest that stress is more strongly associated with exhaustion, while commitment and motivation showed a stronger relationship with reduced accomplishment and devaluation. Evidence of significant predictors across perspectives also supports an integrated approach and may inform integration efforts and targeted intervention strategies.

Social support and childhood cancer survivors: A systematic review (2006-2022).

OBJECTIVE: Research has indicated that social support may play a protective role in the face of stress and help children and adolescents cope with the demands and challenges they face on a daily basis during their cancer journey. However, social support tends to reduce over time as survivors overcome their illness despite its ongoing importance even years after treatment has finished. The current review aimed to systematically examine existing evidence on social support in child and adolescent cancer survivors. METHODS: Five databases (PsychINFO, CINAHL, EMBASE, PubMed and Web of Science) were searched systematically to identify quantitative studies which explored social support from the perspective of child and adolescent cancer survivors aged 18 years or younger. RESULTS: A total of 10 studies met the eligibility criteria for inclusion. Findings from the review indicate that family and friends, particularly parents, are important sources of social support for survivors. Social support was positively related to posttraumatic growth, school re-entry and physical activity, and negatively related to psychological stress, depression, anxiety and stress. Furthermore, findings relating to gender, age and group differences were mixed. A number of methodological concerns were identified in the reviewed studies including small sample sizes, as well as a lack of consistency in the measurement of social support. CONCLUSIONS: Future studies of social support for child and adolescent cancer survivors need to address these shortcomings to help inform care and support interventions promoting social support in survivors.

"You nearly feel a little bit like you've less right to grieve": a qualitative study on the impact of cancer on adult siblings.

PURPOSE: Family members of cancer patients experience a range of challenges and are impacted in various ways by cancer. To our knowledge, the impact of cancer on adult siblings has yet to be explored. Sibling relationships are one of the longest relationships individuals have across the lifespan. Thus, the current study sought to investigate the perspectives of siblings of those who previously had cancer. METHODS: Ten participants were recruited using purposive sampling. A qualitative, cross-sectional design was implemented with both virtual and in-person semi-structured interviews. Interviews were audio-recorded, transcribed and analysed using thematic analysis. RESULTS: The researchers identified five themes relating to both the impact of cancer on siblings and the supports they received: changes in family relationships, sibling's grief is forgotten, benefits of social support networks, supporting their sibling and caregiving and self-support. CONCLUSIONS: Cancer organizations and support services should focus on signposting services for siblings in order to ensure they can access support. Further research is needed with siblings to gain greater insight into what supports siblings feel are available for them to access, whether there are any for them to access or how supports can be improved. IMPLICATIONS FOR CANCER SURVIVORS: The provision of appropriate psychological support for siblings of cancer patients will ensure they can provide optimal support and care to their siblings. This will in turn benefit cancer patients along their cancer trajectory as adequate support from their caregivers will enhance their quality of life.

The associations between photo-editing and body concerns among females: A systematic review.

Emerging research has raised concerns about the growing prevalence of photo-editing behaviour and how this may negatively interact with body-related concerns among females. This review aimed to systematically examine the current evidence relating to the associations between photo-editing behaviour and female body concerns, including body image, body dissatisfaction and body modification. Six databases were searched for studies investigating associations between photo-editing and body concerns in female social media users. Empirical studies published in English were included if they quantitatively measured the association between photo-editing and at least one of the body-related outcomes, and included female participants. A narrative synthesis of the 22 studies meeting these specific criteria was completed. This review revealed mixed findings in relation to the associations between photo-editing and body concerns. The findings indicate there may be a more complex relationship between both concepts that is influenced by alternative factors. The findings also revealed considerable heterogeneity in measurement approaches for both photo-editing behaviour and body-related outcomes. Future research should focus on developing a gold-standard approach to the measurement of various body-related concerns and conducting in-depth analyses in order to further understand the complex relationship between photo-editing and female social media users' body concerns.

A qualitative meta-synthesis examining spirituality as experienced by individuals living with terminal cancer.

This review aimed to examine and synthesise literature on spirituality as experienced by individuals living with terminal cancer. Six databases were systematically searched for studies with qualitative findings relevant to spirituality and terminal cancer. Thirty-seven studies were included and thematic synthesis was used to identify themes. Analytical themes included: making sense of dying; living with dying; feeling connected; and being reflective. This review highlights how the experience of spirituality can positively impact the lives of terminal cancer patients. Further, these findings suggest that spirituality can be a transformative experience that allows individuals to experience peace at end of life.

Barriers to accessing psycho-oncological support in head and neck cancer: A qualitative exploration of healthcare professionals' perspectives.

PURPOSE: Disease- and treatment-related consequences in Head and Neck Cancer (HNC) can result in psychological issues for which specialist psychological support, dubbed psycho-oncology, is recommended. Health and Social Care Professionals (HSCPs) function as a crucial link between survivors and these services, through onward referral pathways. However, little is known about these HSCPs' perspectives on barriers to accessing psycho-oncology in HNC. The current study sought to investigate such perspectives. METHODS: Eleven HSCPs from national cancer centres across Ireland were recruited using purposive sampling. A qualitative, cross-sectional research design was implemented utilising virtual semi-structured interviews. Interviews were audio-recorded, transcribed, and analysed using inductive, reflexive thematic analysis. RESULTS: The researcher identified four themes relating to barriers to psycho-oncology access: Lack of Access and Perceived Elitism in Onward Referral; Communication Barriers; Stigma Associated with Mental Illness and Psychological Services, and Inadequate Signposting and Advertising of Existing Psycho-Oncology Services. These findings indicate that HSCPs face multiple barriers when attempting to refer HNC survivors to psycho-oncology services. Some of these barriers relate to survivors, others to HSCPs themselves, and some to professionals within psycho-oncology services. CONCLUSIONS: By removing barriers in onward referral faced by HSCPs, HNC survivors may more readily link in with pre-existing psycho-oncology services in the future. The following may assist with removing such barriers: increased inter-professional dialogue between HSCPs and psycho-oncology services and communication skills training; mental health stigma reduction campaigns targeted at survivors, HSCPs, and wider society; and increased signposting of available psycho-oncology services and in-service training for HSCPs.

Is a pandemic as good as a rest? Comparing athlete burnout and stress before and after the suspension of organised team sport due to Covid-19 restrictions, and investigating the impact of athletes' responses to this period.

The COVID-19 pandemic resulted in social-distancing measures and the suspension of organised sport globally, and has been shown to have negatively impacted mental health. However, athletes may have experienced reprieve from sport demands, which have previously been linked with maladaptive responses such as burnout and stress. The aims of this study were (1) compare levels of burnout and stress reported by Gaelic games athletes pre- and post-COVID-19 suspension period, (2) explore how athletes utilised and perceived this period and the return to sport, and (3) examine the implications of this for burnout. Participants completed an online questionnaire, which included the athlete burnout questionnaire, perceived stress scale, sport emotion questionnaire, demographic questions, weekly training hours, and other hours for sport (e.g. travel) before Covid-19 (BC-19) and after the Covid-19-induced suspension (AC-19_S). Questions relating to how athletes utilised (e.g. training focus) and perceived (positive/negative impact) the period were included AC-19 S. Data was compared across time-points and we explored predictors of burnout AC-19_S. Ninety-two athletes completed the questionnaire at both time-points. No significant differences in burnout or stress were identified, suggesting the suspension period did not significantly impact these variables. Burnout BC-19, stress AC-19_S, unpleasant emotions about returning to sport and using the period to rest/recover positively predicted burnout AC-19_S. Reduction in other hours across time-points and pleasant emotions about returning predicted lower burnout. Results suggest an athletes' response to a suspension period and subsequent return to sport can impact feelings of burnout, and may have implications for future unanticipated change events.

An investigation into the relationship between social support, stress, and psychological well-being in farmers.

This study investigated the stress-buffering effect of social support on psychological well-being and impact of demographic factors on stress in a sample of farmers. One-hundred and ninety-six farmers completed an online questionnaire including measures of social support, stress, psychological well-being, and demographics. Overall, after controlling for stress, increased social support was associated with higher psychological well-being. Family support had a significant relationship with financial and farm-related factors of stress but not with psychological well-being, while friend and significant other support had a much greater impact on psychological well-being than family support. Membership of a farming organisation was found to be protective against social stress while working on one type of farm only (e.g., dairy) was protective against financial stress. The findings highlight the potential utility of the stress-buffering model in understanding stress among farmers. Future interventions which facilitate social support, reduce stress, and boost psychological well-being among farmers are needed.

"You just need to learn": A qualitative study on the information needs of family caregivers of people with lung cancer.

PURPOSE: Lung cancer caregivers often face considerable duties and responsibilities yet frequently feel unprepared for this role. The current study is the first to purposefully explore the information needs of family caregivers throughout the lung cancer trajectory. METHODS: Semi structured interviews were conducted with nine lung cancer caregivers (7 female) including those bereaved within five years. Interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: Four main themes emerged: 1) "He knew that I'd ask questions, you see": Information-gathering during appointments; 2) "You can't really ask that with mum there": Discordant information needs between caregiver and the person with lung cancer; 3) "Trying to get the answers": Seeking information beyond the hospital; 4) "It took a while to kind of get into": Learning to adjust to changing roles and circumstances. CONCLUSIONS: Lung cancer caregivers need reliable information to feel competent in their new roles and responsibilities. In the current study, there were a number of areas in which information was lacking, including those related to treatment, side effects, care services and symptom management. The provision of appropriate and timely information to lung cancer caregivers can ensure they feel supported in their roles and responsibilities. This will in turn benefit lung cancer survivors by ensuring that they understand information in consultations with oncology nurses and other health professionals and receive appropriate support from their caregivers that enhances their quality of life along the cancer trajectory.

"Dying With Dignity": A Qualitative Study With Caregivers on the Care of Individuals With Terminal Cancer.

This study aimed to examine family members' attitudes and perceptions regarding their choice of care in the event of terminal illness, based on their experience in a caregiver's role, while a loved one was terminally ill. All participants (N = 10) had cared for an immediate family member with terminal cancer. Snowball sampling was used. Qualitative data were collected through in-depth, semi-structured interviews. The data were transcribed verbatim and analyzed using thematic analysis. Five themes were identified from the data. These included two themes relating to participants' experience of care, two themes in relation to participants' attitudes toward the type of care they experienced and a final theme related to the role of religion and spirituality in dealing with loss. The findings of this study support the integration of multidisciplinary healthcare teams and the introduction of holistic care as early as possible within hospitals for individuals with terminal cancer, using the biopsychosocial-spiritual model.

Siblings' Perspectives of the Impact of Child Sexual Abuse Disclosure on Sibling and Family Relationships.

Child sexual abuse (CSA) may have significant consequences for siblings; however, limited research has been conducted on the impact of the abuse on sibling and family relationships following the disclosure of CSA. This study sought to investigate sibling responses to disclosures of CSA among a group of adult siblings in Ireland, and the impact on sibling and family relationships through an online survey. A thematic analysis was conducted on a sub-set of participants who responded to open-ended questions (n = 45). Three main themes were identified as follows: (a) intense emotional reactions, (b) relationship support and strain, and (c) managing family dynamics. CSA disclosure may have a substantial impact on sibling and family relationships. Supporting siblings in the aftermath of CSA disclosure is essential, both for the well-being of the individual who was sexually abused and for the wider family.

El abuso sexual infantil puede tener consecuencias importantes para los hermanos, sin embargo, se han realizado pocas investigaciones sobre el efecto del abuso en las relaciones familiares y fraternales después de la revelación de abuso infantil. El presente estudio tuvo como finalidad investigar las respuestas de los hermanos a las revelaciones de abuso sexual infantil entre un grupo de hermanos adultos en Irlanda, y el efecto en las relaciones familiares y fraternales mediante una encuesta en línea. Se realizó un análisis temático en un subconjunto de participantes que respondieron preguntas de interpretación abierta (n=45). Se identificaron tres temas principales: (a) reacciones emocionales intensas, (b) apoyo y tensión en la relación, y (c) manejo de la dinámica familiar. La revelación del abuso sexual infantil puede tener un efecto considerable en las relaciones fraternales y familiares. Es fundamental apoyar a los hermanos después de la revelación de abuso sexual infantil, tanto por el bienestar de la persona que fue abusada sexualmente como para el resto de la familia.

Unmet supportive care needs associated with quality of life for people with lung cancer: A systematic review of the evidence 2007-2020.

INTRODUCTION: The aim of this review was to systematically examine the evidence on the relationship between quality of life (QoL) and unmet supportive care needs in patients with lung cancer. METHODS: Six databases were searched for studies published since 2007. Studies were included if they measured QoL using a standardised tool and examined its association with unmet supportive care needs in lung cancer patients. RESULTS: Six studies involving 562 patients were included. Nearly two thirds of the patients had been diagnosed with advanced cancer (Stage III or IV), and the majority had been diagnosed for less than 2 years. There was a negative association between QoL and unmet needs using two different measures (Supportive Care Needs Survey[SCNS] and Cancer Survivors Unmet Needs Survey [CaSUN]). In two studies, the relationship was limited to physical and/or psychological domains. CONCLUSIONS: Unmet supportive care needs are associated with poorer QoL for people with lung cancer: The findings suggest that unmet physical and psychological needs may have the most impact on QoL and reflect the high symptom burden and psychological distress associated with lung cancer. Further work is needed to examine these relationships to identify the services and interventions that address the range of care needs across the disease trajectory.

Variables associated with distress amongst informal caregivers of people with lung cancer: A systematic review of the literature.

OBJECTIVE: Informal caregivers of people with lung cancer often experience a substantial care burden and associated negative consequences due to the often-contracted course of the disease. The objective of this review was to systematically examine the evidence on the factors associated with lung cancer caregiver distress. METHODS: Five databases (MEDLINE, CINAHL, EMBASE, PsychINFO and Web of Science) were searched for studies investigating factors associated with distress amongst caregivers of people with lung cancer. Empirical studies published up to July 2020 were included if they measured distress using a valid and reliable measure and examined its association with at least one other factor, with a sample of 50 or more caregivers. RESULTS: Thirty publications describing 27 studies (16 cross-sectional; 6 prospective; 8 intervention) involving 3744 caregivers (primarily spouse or adult child) were included. A narrative synthesis of the findings is presented due to heterogeneity in study design, variables measured and analyses conducted. Patient variables associated with greater distress included: stage of cancer and quality of spousal relationship. Caregiver variables associated with higher distress included: social support, coping strategies and self-efficacy. CONCLUSIONS: Several variables were associated with distress amongst lung cancer caregivers. Understanding these variables could inform the development of interventions that will enable caregivers to care effectively while maintaining their own well-being. Screening for distress among caregivers may identify those caregivers who would benefit from early intervention.

Health literacy impacts self-management, quality of life and fear of recurrence in head and neck cancer survivors.

PURPOSE: Little is known about whether health literacy is associated with affects certain key outcomes in head and neck cancer (HNC) survivors. We investigated (i) the socio-demographic and clinical profile of health literacy and (ii) associations among between health literacy and self-management behaviours, health-related quality of life (HRQL) and fear of recurrence (FoR) in HNC survivors. METHODS: A population-based survey was conducted in Ireland. Health literacy was assessed using a validated single-item question. Socio-demographic, clinical and psychosocial outcome variables (FoR, self-management behaviours, HRQL) were collected. Multivariable linear regression was performed to estimate associations between health literacy and each psychosocial outcome. RESULTS: Three hundred ninety-five (50%) individuals responded to the survey. Inadequate health literacy was evident among 47% of the sample. In adjusted models, HNC survivors with inadequate health literacy had significantly lower levels of self-management behaviours in the domains of health-directed behaviour, positive and active engagement in life, self-monitoring and insight, constructive attitudes and approaches and skills and technique acquisition. Inadequate health literacy was independently associated with lower functional well-being and HNC disease-specific HRQL. FoR was also significantly higher among those with inadequate health literacy. CONCLUSIONS: HNC survivors with inadequate health literacy have lower levels of self-management behaviours, lower functional HRQL and increased FoR compared to those with adequate health literacy. IMPLICATIONS FOR CANCER SURVIVORS: Clinicians, healthcare providers and those developing interventions should consider how inadequate health literacy among HNC survivors might affect post-treatment outcomes when developing services and providing support for this group.

Health literacy in cancer caregivers: a systematic review.

PURPOSE: Cancer caregivers play a vital role in the care and health decision-making of cancer survivors. Consequently, their health literacy levels may be particularly important, as low levels may impede adequate care provision. As such, the current review aimed to systematically examine the literature on health literacy amongst cancer caregivers. METHODS: We systematically searched the following databases using controlled vocabulary and free-text terms: PsychINFO, MEDLINE, EMBASE, CINAHL and Web of Science. Peer-reviewed empirical studies that explicitly measured and reported cancer caregiver health literacy levels were included. RESULTS: The search yielded six articles consisting of 593 cancer caregivers exploring health literacy and eHealth literacy. There was substantial variation in health literacy measurement tools used across included studies, precluding the possibility of conducting a meta-analysis. The included articles reported significant associations (limited to single studies) between caregiver health/eHealth literacy and (i) cancer survivor demographics, (ii) caregivers' communication style, (iii) caregiver Internet access and (iv) caregiver coping strategies. CONCLUSIONS: Findings highlight a need for future longitudinal research regarding cancer caregiver health literacy incorporating more standardized and population-specific measurement approaches. In particular, there is a pressing need to investigate factors associated with cancer caregiver health literacy to inform the development/delivery of future interventions. IMPLICATIONS FOR CANCER SURVIVORS: Future high-quality research which investigates the factors which contribute towards sub-optimal health literacy amongst cancer caregivers would aid in the development of appropriate and effective health literacy interventions in these groups. Such interventions would allow this important group to provide appropriate support to cancer survivors and enhance survivors' engagement in their health and wellbeing.

Trialogue Meetings: Engaging Citizens and Fostering Communities of Wellbeing Through Collective Dialogue.

Community-based participatory approaches are widely recognized as valuable methods for improving mental health and well-being by enabling a greater sense of liberty among participants, through the development of equitable policies and practices, which accommodate a range of diverse perspectives. One such approach, "Trialogue Meetings," has been found to encourage disclosure and dialogue surrounding mental health, facilitate the growth and development of communities in relation to people's experience of mental health difficulties, service provider and community response. Emerging in the 1990s because of perceived and felt inequitable relations between people with lived experience of mental health difficulties, family members of people with mental health difficulties and professionals providing mental health service provision. This approach has been shown to successfully reduce stigma and discrimination and improve relations between stakeholders in community and mental health care settings. Trialogue Meetings incorporate Open Dialogue methods to allow multiple stakeholder groups to participate in conversations around a given topic and enable the creation of a common language and mutual understanding. Trialogue Meetings have added benefits of allowing individuals to express themselves better, gain a sense of relationality and community with others and address predetermined power hierarchies with prescribed responses to people's experiences. In this perspective, we present an outline for Trialogue Meetings as a medium for enhancing wellbeing, providing a transformative empowering process for deliberate discursive practice and engaging citizens through sustained collective dialogue.

Identification of additives in polymers from single-use bioprocessing bags by accelerated solvent extraction and ultra-high performance liquid chromatography coupled with high-resolution mass spectrometry.

Single-use technologies are increasingly used in biopharmaceutical manufacturing. Despite their advantages, these plastic assemblies draw concern because they are a potential source of contamination due to extractable and leachable compounds (E&Ls). Characterising E&Ls from such materials is a necessary step in establishing their suitability for use. Therefore, there is an urgent need for sensitive methods to identify and quantitatively assess compounds in plastic materials. Accelerated solvent extraction (ASE) is a powerful technique that can be reliably used for this purpose. In this study, ASE followed by liquid chromatography and Orbitrap-based High Resolution Accurate Mass (HRAM) mass analysis was found to be an efficient and versatile method for the determination of additives in different multilayer polymer systems from single-use bags. ASE optimisation was performed using a design of experiments approach. The type of solvent, temperature, swelling agent addition, static time and number of cycles were the selected variables. Optimum conditions were dependent on the type of plastic film. Ethyl acetate and cyclohexane were selected individually as optimum solvents. Optimum temperatures were 90-100 °C. Pressure was set at 1500 psi and extraction time was 30 min in 2 cycles. Swelling agent addition was necessary with polar extraction solvents. More than 100 additives and degradation products were confidently identified by HRAM MS. Correlations between the type and levels of identified additives and the type of polymer system were established. In addition, degradation behaviour and pathways for some additives can be addressed.