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Background: Siblings of children with cancer have been shown to experience disruption in multiple domains including family, school, and friendships. Existing literature on siblings' experiences focuses on older children or on a broad range of ages. Aim: To explore the experience of siblings aged 8-12 years when their brother or sister is diagnosed with cancer. Method: A qualitative design incorporating phenomenology as the theoretical framework was used. Participants were recruited from across Australia via notices on social media sites and by the distribution of flyers. We used thematic analysis to analyze the data. Data were collected via semistructured interviews conducted either in person or online. Findings: A total of 13 siblings (7 boys and 6 girls) aged between 8 and 12 years (M = 9.8, SD = 1.6) were interviewed. Seven main themes were identified. These were "It was really hard": Reactions to the cancer diagnosis; "I'm really angry": Emotional and Physical Responses to siblings' treatment; "I pretend teddy is real": Play as an outlet; "It was very lonely": Missing their siblings; "I missed out on a lot of fun": Disruption of activities: School, sports, playdates, and parties; Change and Transition and "Making a difficult situation worse": COVID-19 Pandemic. Discussion: Findings extend the current understanding showing that younger siblings' developmental and cognitive skills impact their experiences of childhood cancer. Younger siblings outlined the many losses they experienced which demonstrated a need for a comprehensive and tailored program to support young siblings aged under 12 of children with cancer.
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(1) Background: A significant proportion of cancer survivors report experiencing a cognitive 'fog' that affects their ability to think coherently and quickly, and reason with clarity. This has been referred to as cancer-related cognitive impairment (CRCI). CRCI has extensive impacts on the daily lives of people living with or beyond cancer, including occupational, social, and psychological functioning. Oncology health professionals report feeling under-resourced to effectively assess the needs of an individual with CRCI and then provide optimal care and referral. (2) Methods: The objective of this project is to develop and provide an initial validation of the first purpose-built unmet needs assessment for CRCI: the Unmet Needs Assessment of Cancer-Related Cognitive Impairment Impact (COG-IMPACT). We will use a multiple-stage, co-design, mixed-methods approach to develop and provide an initial validation of the COG-IMPACT. (3) Results: The primary anticipated result of this research is the production of the COG-IMPACT, the first purpose-built unmet needs assessment for CRCI. The assessment could be used by health professionals to understand the unmet needs and facilitate optimal care and referral for cancer survivors, by survivors to elucidate their supportive needs and advocate for their care, and by researchers to examine the correlates of unmet needs relating to CRCI, as well as how best to support people with CRCI.
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A significant proportion of cancer survivors will experience some form of mental health compromise across domains including mood, anxiety, psychosis, eating disorders, and substance use. This psychopathology within cancer survivors is related to a range of negative outcomes and can also have a substantial negative impact on quality of life. Along with psychopathology, cognitive impairments are also commonly experienced, resulting in deficits in memory, reasoning, decision-making, speed of processing, and concentration, collectively referred to as cancer-related cognitive impairment (CRCI). Within the non-oncology literature, cognitive deficits are consistently demonstrated to be a key transdiagnostic aetiological feature of psychopathology, functionally contributing to the development and perpetuation of symptoms. Whilst there is an acknowledgement of the role mental health concerns might play in the development of and perception of CRCI, there has been limited acknowledgement and research exploring the potential for CRCI to functionally contribute toward the development of transdiagnostic psychopathology in cancer survivors beyond simply psychosocial distress. Given the theoretical and empirical evidence suggesting cognitive deficits to be an aetiological factor in psychopathology, we provide a rationale for the potential for CRCI to be a factor in the development and perpetuation of transdiagnostic psychopathology in cancer survivors. This potential functional association has significant implications for risk identification, prevention, treatment, and supportive cancer care approaches regarding psychopathology in cancer survivorship. We conclude by providing directions for future research in this area.
Subject(s)
Cancer Survivors , Cognitive Dysfunction , Neoplasms , Quality of Life , Humans , Cancer Survivors/psychology , Cognitive Dysfunction/etiology , Neoplasms/complications , Neoplasms/psychology , Mental Disorders/etiologyABSTRACT
BACKGROUND: Approximately 770 children are diagnosed with cancer in Australia every year. Research has explored their experiences and developed recommendations for improving support provided to families. These have included the provision of psychology services, improved communication between healthcare professionals and parents, and increased information for families. METHODOLOGY: In our hermeneutic phenomenological study, 44 participants (21 fathers and 23 mothers), with ages ranging from 28 to 51 years (M = 37 years, SD = 5.6 years) were interviewed. Interviews ranged from 45 to 150 min (M = 65 min, SD = 18 min) duration. FINDINGS: Thematic analysis of the data generated seven themes. Take it second by second; Find some normality; Take care of yourself; You need to talk to someone; Just take all the help; Speaking up for your child; and Take care of the siblings. CONCLUSION: The results of our study provide firsthand advice from parents. The overwhelming theme that emerged is that while many parents revealed that they had not asked for or received support, in hindsight they unanimously reflected that they wished they had sought out services. The strength of this study is that parents are more likely to accept the advice of other parents with a shared lived experience. The results of our study can be used to develop resources that could be provided to parents. These resources would emphasize that the recommendations come from parents who have traveled the same path and have learnt from hindsight and experience.
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INTRODUCTION: The currently accepted best practice radiation treatment for left breast cancer patients is Deep Inspiration Breath Hold (DIBH) where patients hold a deep breath to reduce late cardiac and pulmonary effects from treatment. DIBH can be challenging and induce or exacerbate anxiety in patients due to the perceived pressure to reduce radiation treatment side effects. This study explored the experiences of patients treated with Deep Inspiration Breath Hold Radiation Therapy (DIBH-RT) to improve patient-centred care and inform the design of multimedia educational tools for future patients undergoing DIBH. METHODS: This descriptive qualitative study was underpinned by a social constructivist approach to create new educational and patient care approaches based on previous patients' experiences. Semi-structured interviews were conducted with patients who had completed DIBH-RT for breast cancer. Data was analysed with reflexive thematical analysis. RESULTS: Twenty-two patients were interviewed with five key themes identified: (1) informational needs, (2) care needs, (3) autonomy, (4) DIBH performance influencers and (5) other centredness. Recommendations were derived from these themes to improve future treatments of DIBH patients. These recommendations revolved around improvements to education, patient-centred care and strategies to improve self-efficacy with breath holding. CONCLUSION: Patients offer a wealth of knowledge regarding their lived experiences with treatment which can enhance future patients' experiences if incorporated into their education and care. Eliciting patients' views of their DIBH-RT treatment highlighted the need to improve patient self-efficacy with DIBH through familiarity with their planned treatment from new multimedia education, and foster patient care to enhance their experience.
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A child's cancer diagnosis has a significant impact on the lives of grandparents. Grandparents experience the stress of worrying about both their adult children and their grandchildren. Our study aimed to explore the lived experience of grandparents of children diagnosed with cancer. A qualitative design involving semi-structured interviews was used and data were analyzed using reflexive thematic analysis. Twenty grandparents aged 41 to 77 years were interviewed. Six themes were identified: (a) Diagnosis: changing everything; (b) Aspects of treatment: A different world; (c) Sandwich generation; (d) Family: Worrying about everyone; (e) Balancing work; and (f) It's like suddenly a door opens. Our study demonstrates the life-changing impact of having a grandchild diagnosed with cancer. It expands on existing knowledge and shows that, due to an aging population and demographic changes, some grandparents must juggle the demands of caring for aging family members and working while supporting adult children and grandchildren.
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Grandparents , Neoplasms , Child , Adult , Humans , Aged , Qualitative Research , Adult Children , Intergenerational RelationsABSTRACT
BACKGROUND: Infants with life-limiting conditions are a heterogeneous population. Palliative care for infants is delivered in a diverse range of healthcare settings and by interdisciplinary primary healthcare teams, which may not involve specialist palliative care service consultation. OBJECTIVE: To synthesise the literature for how palliative care is delivered for infants aged less than 12 months with life-limiting conditions. METHODS: An integrative review design. MEDLINE, CINAHL, ProQuest, Cochrane, Joanna Briggs Institute and EMBASE were searched for research published in English language, from 2010 to 2022, and peer reviewed. Critical appraisal was completed for 26 patient case series, 9 qualitative, 5 cross-sectional and 1 quality improvement study. Data analysis involved deductive content analysis and narrative approach to summarise the synthesised results. RESULTS: 37 articles met the eligibility for inclusion. Two models of palliative care delivery were examined, demonstrating differences in care received and experiences of families and health professionals. Health professionals reported lack of palliative care education, challenges for delivering palliative care in intensive care settings and barriers to advance care planning including prognostic uncertainty and transitioning to end-of-life care. Families reported positive experiences with specialist palliative care services and challenges engaging in advance care planning discussions. CONCLUSION: There are complex issues surrounding the provision of palliative care for infants. Optimal palliative care should encompass a collaborative and coordinated approach between the primary healthcare teams and specialist palliative care services and prioritisation of palliative care education for nurses and physicians involved in providing palliative care to infants.
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Many cancer survivors experience cognitive impairments that impact memory, concentration, speed of information processing, and decision making. These impairments, collectively known as cancer-related cognitive impairments (CRCIs), are a key domain of unmet needs and can significantly impact a cancer survivor's identity and quality of life. However, there are no purpose-built, multi-domain, needs assessment tools specifically for CRCI. The development of such tools requires an in-depth understanding of cancer survivors' CRCI-specific challenges and associated needs. This study explored the challenges and associated needs of cancer survivors with persistent CRCI. An in-depth qualitative design using semi-structured interviews with (a) cancer survivors with perceived CRCI (n = 32) and (b) oncology health professionals (n = 19) was utilised. A reflexive thematic analysis of the interviews resulted in five overarching themes: (1) executing regular activities, (2) relational difficulties, (3) occupational functioning, (4) psychological distress, and (5) social functioning, as well as an additional informational needs domain. Ultimately, CRCI was found to directly produce a range of challenges that negatively, and persistently, impact cancer survivors' quality of life. Cancer survivors were also found to have a range of needs associated with these challenges. This research should be used to inform future challenges and needs assessment tools as well as treatment and supportive care priority areas directly relating to CRCI.
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Many paediatric patients experience anxiety and distress when undergoing radiation therapy and, as a result, are often anaesthetised or sedated (A/S) so that they remain still. The practice of using A/S has implications for the child, the family and the health system. Building on the article by McCoola et al. (DOI 10.1002/jmrs.705), this editorial discusses approaches to improving paediatric patients' and their families' experiences of radiation therapy by reducing the need for A/S. Interventions need to be underpinned by theory and adopt robust research methods.
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Anesthetics, General , Humans , Child , AnxietyABSTRACT
Cancer patients' children are vulnerable to psychosocial and behavioural issues. The mechanisms underlying how children are affected by their parent's diagnosis are unknown, warranting further research. This study investigated how children are affected by their parent's cancer diagnosis and provides a theoretical model conceptualising this experience. Informed by methods of grounded theory, embedded within a social constructivist framework, 38 informants (15 health professionals (HPs); 11 parents; 12 children (5 to 17 years)) were interviewed using a semi-structured format. Three themes were identified: (i) children were worried and distressed because they felt alone, (ii) parents were unable to tend to children's needs because they were overwhelmed by practical factors, and (iii) HPs were not detecting children due to barriers that affected their visibility in clinical settings. The proposed Alexander's Children's Cancer Communication (ACCC) Model and clinical recommendations made can be used to guide the clinical practice and development of future intervention research.
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End-of-life Goals of Care (GoC) discussions aim to support care that is consistent with patients' preferences and values. This study uses an exploratory qualitative design drawing upon a social constructivist epistemology to examine family carers' perspectives on GoC within acute Australian hospital settings. Twenty-five family carers of aging inpatients were recruited from six Australian hospitals to participate in recorded, semi-structured interviews. Data were transcribed and analyzed using reflexive thematic analysis. Three main themes were developed. Theme 1 explored carers' experiences of GoC discussions-identifying varying levels of preparedness and carers' hopes for open, two-way discussions initiated by empathic Health Care Professionals (HCPs). Theme 2 examined carers' unmet needs for time, space, consistency, and support to make careful decisions. Theme 3 identified carers advocating for patients' needs when they could not do it themselves. Preparing carers and normalizing GoC discussions relating to end-of-life care maximizes benefits for patients, carers, and HCPs involved.
Subject(s)
Caregivers , Health Personnel , Humans , Australia , Hospitals , Patient Care Planning , Qualitative ResearchSubject(s)
Cancer Survivors , Neoplasms , Humans , Brain , Health Personnel , Medical Oncology , Delivery of Health Care , Qualitative Research , Neoplasms/drug therapyABSTRACT
University students have been identified as a population sub-group vulnerable to food insecurity. This vulnerability increased in 2020 due to the COVID-19 pandemic. This study aimed to assess factors associated with food insecurity among university students and the differences between students with and without children. A cross-sectional survey of (n = 213) students attending one university in Western Australia measured food insecurity, psychological distress, and socio-demographic characteristics. Logistic regression analyses were conducted to identify factors associated with food insecurity. Forty-eight percent of students who responded to the survey had experienced food insecurity in 2020. International students who were studying in Australia were nine times more likely to experience food insecurity than domestic students (AOR = 9.13; 95% CI = 2.32-35.97). International students with children were more likely to experience food insecurity than international students without children (p < 0.001) and domestic students with (p < 0.001) or without children (p < 0.001). For each unit increase in depression level, the likelihood of experiencing food insecurity increased (AOR = 1.62; 95% CI = 1.12-2.33). Findings show a higher prevalence of food insecurity among international university students and students with children during the COVID-19 pandemic and that food insecurity was associated with higher levels of psychological distress. These findings highlight the need for targeted interventions to mitigate the risk of food insecurity among Australian university students, particularly among international students, students with children, and those experiencing psychological distress.
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COVID-19 , Psychological Distress , Child , Humans , Cross-Sectional Studies , Socioeconomic Factors , COVID-19/epidemiology , Western Australia/epidemiology , Universities , Pandemics , Food Supply , Australia/epidemiology , Students/psychology , Food InsecurityABSTRACT
Background: Weight bias exhibited by health care students may continue into their future practice, compromising the provision of care that people living with overweight or obesity receive. This highlights the need to comprehensively examine the extent to which weight bias is present among health care students and the factors that may be associated with students' weight bias. Methods: In this cross-sectional study, Australian university students enrolled in health care courses were invited via social media advertisements, snowball and convenience sampling, and by making direct contact with universities to complete an online survey. Students provided demographic information including discipline of study, perceived weight status, and state of residence. Students then completed several measures which assessed their explicit and implicit weight bias, and empathy. Descriptive statistics established the presence of explicit and implicit weight bias, and ANCOVAs, ANOVA, and multiple regression analyses were conducted to examine the potential factors associated with students' exhibited weight bias. Findings: Between March 08, 2022, and March 15, 2022, 900 eligible health care students attending 39 Australian universities participated in the study. Students reported varying levels of explicit and implicit weight bias, with minimal differences between disciplines on most outcome measures. Students who identified as men (vs. women) exhibited higher of both explicit and implicit bias (Beliefs About Obese Persons (BAOP): p = 0.0002, Antifat Attitudes Questionnaire (AFA)-Dislike: p = 0.019, AFA Willpower p < 0.0001, Empathy for Obese Patients: p = 0.0011, Implicit Association Test: p = 0.022), and students who displayed greater (vs. less) empathic concern exhibited lower levels of explicit bias (BAOP, AFA Dislike and Willpower, and Empathy for Obese Patients: p < 0.0001). Having witnessed the enactment of weight stigma sporadically (vs. regularly) by role models was associated with greater attribution of the causes of obesity to willpower (a few times a month vs. daily: p = 0.020, a few times a year vs. daily: p = 0.022), and less time spent with people living with overweight or obesity outside of study was associated with more dislike (a few times a month vs. daily: p = 0.0048, once a month vs. daily: p = 0.0002) and less fear of fat (once a month vs. daily: p = 0.036, and once a month vs. a few times a week: p = 0.0028). Interpretation: Results demonstrate the presence of both explicit and implicit weight bias among Australian health care students. Several characteristics and experiences of students were associated with their weight bias. Validity of the exhibited weight bias should be established in practical interactions with people living with overweight or obesity and novel interventions should be developed to ameliorate weight bias. Funding: Research Training Program (RTP) Scholarship, Australian Government, Department of Education.
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More women are returning to work following breast cancer treatment. Our team designed 'Beyond Cancer', a multimodal rehabilitation program to support breast cancer survivors to return to work. This study aimed to determine the feasibility of the intervention from the breast cancer survivor, employer and occupational rehabilitation provider perspectives. The feasibility design focused on implementation, acceptability and preliminary indications of efficacy. Primary outcome measures included work status, work capacity and perceived support at work. Responses were compared with an historical usual care group of mixed cancer survivors. The tailored intervention was delivered over 33 weeks (on average) by trained occupational rehabilitation consultants. Eighty-four women with breast cancer (mean age = 50.8 years, SD = 8.24) who were unable to work in their pre-diagnosis capacity for >3 months participated. Results provided preliminary indications of efficacy for primary work outcomes, including work capacity relative to the historical usual care group, and some secondary biopsychosocial variables (physical fatigue, return to work expectations). The intervention was acceptable, demonstrated strong participant engagement and high satisfaction. Feasibility has been demonstrated for this multimodal intervention focused on returning to sustainable work for women with breast cancer. Future research is required with people diagnosed with other cancer types to demonstrate broader implementation.
Subject(s)
Breast Neoplasms , Cancer Survivors , Humans , Female , Middle Aged , Breast Neoplasms/psychology , Cancer Survivors/psychology , Feasibility Studies , Fatigue , Research DesignABSTRACT
BACKGROUND: Children living with parental cancer are at an increased risk for various psychosocial, emotional, and behavioural problems. However, research regarding how children are affected by their parent's diagnosis is still developing and patients' children are typically invisible in clinical practice. This study aimed to investigate how children are affected by their parent's cancer diagnosis, from children's perspectives. METHODS: Informed by methods of grounded theory and embedded within a social constructivist framework, twelve children (ranging from 5 to 17 years) living with a parent with cancer were interviewed using a semi-structured format assisted by a novel approach derived from play- and art-based developmental literature. RESULTS: Findings indicate that patients' children are constantly worried and distressed, and there are barriers that can be overcome to mitigate this. Four overarching themes were identified: (I) Feeling worried and distressed; (II) Comprehending their parent's cancer diagnosis; (III) Being disconnected from their supports; and (IV) Needing someone to talk to. CONCLUSIONS: Children experience considerable levels of ongoing worry and distress when a parent is diagnosed with cancer and have difficulties comprehending and articulating this. They also feel a level of disconnection from their usual support systems (e.g., parents) and are limited regarding who they can seek out and talk to. Mitigating children's ongoing worries and distress by promoting the availability and accessibility of parents and other supports to children, and reducing communication barriers between children and adults, should be a primary focus of psycho-oncology research and practice.
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Research has shown differences in how fathers and mothers respond to a child's cancer diagnosis. Previous studies have highlighted that sociocultural norm shape fathers' experiences of their child's cancer diagnosis. Our phenomenological qualitative study aimed to examine the lived experiences of fathers whose children have been diagnosed with cancer and explore the impact of sociocultural gender roles. Fathers whose children were currently receiving treatment or had completed treatment in the previous 15 months were recruited from across Australia. Twenty-one fathers were interviewed. Five themes were identified: (a) Your world falls apart: Diagnosis and treatment; (b) Care for the child: Just the way it is; (c) Keeping strong: Finding ways to cope; (d) Employment: Practical and emotional support at work; and (e) Guilt, relief, and grief: Facing death. This study demonstrates the profound impact of a child's diagnosis on fathers and demonstrates that societal-cultural norms influence fathers' experience of childhood cancer.
Subject(s)
Fathers , Neoplasms , Male , Female , Child , Humans , Fathers/psychology , Mothers/psychology , Grief , Qualitative ResearchABSTRACT
OBJECTIVE: The objective of this study was to explore the experiences of head and neck cancer (HNC) survivors who returned to valued activities to understand how they reconstruct their lives following HNC diagnosis and treatment. METHODS: A qualitative research approach based on social constructionist theory was used. A total of 21 in-depth semi-structured interviews were conducted with adults diagnosed with any type of HNC in the previous 6 years. Reflexive thematic analysis was used to identify themes. RESULTS: HNC presents a unique trauma following which some survivors navigate paths back to meaningful activities. The experiences of HNC survivors who adapted to life after treatment described internal and external change and development, identified by three themes; Mindfulness; Gratitude; and Adaptation. CONCLUSION: People diagnosed with HNC frequently experience lasting effects and other survivorship issues, however some survivors were able to return to valued activities and recreate a meaningful lifestyle reflecting the possibility of post traumatic growth. This study provides insight into the experiences of head and neck cancer survivors who were able to make meaning and find internal and external growth following treatment. These findings can be used to inform advanced communication skills training for oncology health professionals and psychoeducational courses for people diagnosed with head and neck cancer in the future.
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Head and Neck Neoplasms , Survivors , Adult , Humans , Qualitative Research , Health Personnel , Adaptation, Physiological , Quality of LifeABSTRACT
Advance Care Planning involves having conversations, completing documents detailing individuals' end-of life treatment and care preferences, and appointing legal proxies who make health, lifestyle, or financial decisions. Although beneficial outcomes have been demonstrated, community rates of Advance Care Planning remain low. We developed a theoretically based workshop to increase knowledge and change behaviors in relation to Advance Care Planning; 347 participants completed the workshop. Advance Care Planning knowledge and action significantly improved three months post workshop. The intervention increased Advance Care Planning knowledge and changed behaviors.
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Advance Care Planning , Terminal Care , Humans , CommunicationABSTRACT
PURPOSE: To characterise the care management trajectories of infants with life-limiting conditions, who died before 12 months, including clinical decision-making processes, identification of triggers that led to changes in care management from cure-orientated to palliative care and specialist palliative care team involvement. DESIGN AND METHODS: Retrospective patient health record review of infants with life-limiting conditions who died before 12 months of age and received care at three hospitals in Western Australia. Two data analysis methods; directed content analysis and process mapping. RESULTS: A total of 45 patient health records were reviewed. Process mapping led to typology of care management encompassing four trajectories; early de-escalation due to catastrophic event; treatment with curative intent throughout; treatment with curative intent until a significant point; and early treatment limits. Standardised advance care planning processes were used for just over 10% of infants. There was specialist palliative care team involvement for 25% of infants. CONCLUSION: Only a proportion of infants received early integration of palliative care principles and practices. Infants and their families may benefit from earlier integration of palliative care, and standardised processes for advance care planning that are done in parallel to treatment. PRACTICE IMPLICATIONS: There is opportunity to further enhance the delivery of palliative care to infants with life-limiting conditions and optimise the experience for families through education for health professionals, implementation of advance care planning and standardisation through policies and clinical practice guidelines.