Cancer-related cognitive impairment as a key contributor to psychopathology in cancer survivors: implications for prevention, treatment and supportive care.

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.

Grandparents' Experiences of Childhood Cancer: A Qualitative Study.

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.

Return to valued activities: Survivors' experiences of adaptation and growth after treatment for head and neck cancer.

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.

Care management trajectories of infants with life-limiting conditions who died before 12 months of age; a retrospective patient health record review.

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.

Development and initial test of the self-report grief and bereavement assessment.

Implementing evidence-based and cost-effective bereavement care is a challenge. A self-report measure could assist to identify caregivers at-risk of prolonged grief. We developed a new measure via five steps: identification of risk and protective factors for prolonged grief, item generation, consultation with an expert panel (n = 8), review by the academic team and expert panel, and a pilot test with family caregivers (n = 19) from three palliative care services. The Grief and Bereavement Assessment is a brief self-report measure that is theoretically and empirically grounded, acceptable to caregivers, feasible for use in palliative care, and requires psychometric validation.

Community workshops increase advance care planning knowledge, appointment of legal proxies and completion of end-of life written plans.

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.

Fathers' Experiences of Childhood Cancer: A Phenomenological Qualitative Study.

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.

"Who can I ring? Where can I go?" Living with advanced cancer whilst navigating the health system: a qualitative study.

BACKGROUND: People with advanced cancer often experience greater physical and psychosocial morbidity compared to those with early disease. Limited research has focused on their experiences within the Australian health system. The aim of this study was to explore the lived experiences of adults receiving care for advanced cancer. METHODS: A qualitative design with a descriptive phenomenological approach was used to explore the lived experiences of people with advanced cancer following their diagnosis. Twenty-three people living with an advanced solid malignancy receiving care were referred by their oncologists to take part in an interview conducted at their home, the hospital, or over the phone. RESULTS: Three key themes emerged relating to participants' experiences of living with advanced cancer: (1) living with a life-limiting diagnosis and uncertainty, (2) living with symptom burden and side effects, and (3) living within the health system, with two subthemes, the patient-clinician relationship, and care coordination. Participant relationships with their health professionals were particularly important and had a defining impact on whether patient experiences living with cancer were positive or negative. CONCLUSION: People with advanced cancer experienced broad variation in their experiences navigating the health system, and their relationships with clinicians and other health professionals were important factors affecting their perceptions of their experiences. Attention to the coordination of care for people with advanced cancer is necessary to improve their experiences and improve symptom control and the management of their psychosocial burden.

"My life's not my own": A qualitative study into the expectations of head and neck cancer carers.

INTRODUCTION: Cancers that originate from the upper aerodigestive tract are collectively known as head and neck cancer. The most common are squamous cell carcinomas of the oropharynx, larynx, and oral cavity. Head and neck cancer patients experience significant physical and psychological changes because of the disease and treatment. There is a substantial strain on family carers who have extensive responsibilities over most aspects of the patient's life. The aim of the study was to understand the perspectives of being an HNC carer and their perceived expectations of the role. METHODS: The study adopted a qualitative research design with a social constructionist epistemology. Interviews were conducted with 20 carers who were currently caring for someone diagnosed with head and neck cancer. RESULTS: Three overarching themes were identified: taking responsibility for the patient's nutrition, navigating a new and different relationship, and "my life's not my own." Participants felt responsible for ensuring the patient was eating and became increasingly frustrated when the patient was unable to intake food. Carers prioritised the patients' needs at the expense of their own, and several came to resent the role. CONCLUSION: Carers' expectations of their role informed how they approached giving care. Carers need to be supported from diagnosis and encouraged to prioritise their own wellbeing.

Parents' Experiences of Childhood Cancer During the COVID-19 Pandemic: An Australian Perspective.

INTRODUCTION: COVID-19 has had far-reaching impacts including changes in work, travel, social structures, education, and healthcare. OBJECTIVE: This study aimed to explore the experiences of parents of children receiving treatment for cancer during the COVID-19 pandemic. METHODS: Parents whose children were currently in treatment for childhood cancer or had completed treatment in the previous 12 months, participated in semi-structured interviews, face-to-face or via teleconferencing. Thematic analysis was used to analyze the data. RESULTS: The sample consisted of 34 participants (17 fathers and 17 mothers) from all states across Australia. Median age 37.5 years (range 29-51, years, SD = 6.3). Five main themes were identified: "Welcome to the Club"; "Remote Work and Study"; "Silver Linings"; "The Loneliest Experience" with three sub-themes "Immediate Family"; "Friends"; and "Overseas Family" and "Lack of Support" with two sub-themes: "Community Support" and "Organized Support." CONCLUSION: These findings revealed contrasting experiences of the impact of the COVID-19 pandemic. For parents whose children were neutropenic, the pandemic provided benefits in increased community understanding of infection control. Parents also reflected that the movement to remote work made it easier to earn an income. In contrast, some parents observed that restrictions on visitors and family intensified feelings of isolation. Parents also described how the COVID-19 reduced access to support services. These findings contribute to an understanding of the multifaceted impacts of the COVID-19 pandemic on families of children with cancer.

'Torn in two': Experiences of Mothers Who Are Pregnant when Their Child Is Diagnosed With Cancer.

Mothers of children diagnosed with cancer have been shown to experience high rates of psychological distress and poor physical health. Pregnancy further increases the healthcare needs of mothers due to the marked physiological changes and psychological adaptations. Our study aimed to explore the experiences of mothers who were pregnant and/or had a baby while their older child was receiving treatment for cancer. Our study employed a qualitative description methodology using semi-structured interviews. Participants were recruited from across Australia via notices on social media sites and the distribution of flyers. The sample comprised 13 mothers who were pregnant and/or had a baby and had a child diagnosed with cancer who was under 17 years old. Thematic analysis was used to analyse the data from which six themes were identified: (1) an impossible balancing act, (2) mother's health and well-being, (3) creating certainty: birthing plans, (4) a bit of sunshine and a time to rest, (5) challenges of caring for the baby and (6) an unenviable position: doing my best versus feeling guilty. Our study demonstrates the additional challenges faced by mothers who are pregnant while their child is receiving cancer treatment. There is a need for a comprehensive and coordinated program that provides pregnant mothers with practical and psychological support. The implementation of such a program has the potential to improve health outcomes for all family members, particularly the mother and their newborn.

Beliefs and Emotions Underpin Community Attitudes Towards Voluntary Assisted Dying in Australia.

Assisted dying refers to the steps of the administration of a voluntary assisted dying substance and the administration of the substance. In Australia, assisted dying is now legal in all states. However, there is limited knowledge of what underpins the community's attitudes toward assisted dying. It is important for health professionals to understand what underpins attitudes toward assisted dying when navigating the option with patients and family members. We used a survey based on the Tripartite Model of Attitudes to examine the degree to which beliefs, emotions, and experiences, as well as knowledge, underpinned attitudes towards assisted dying. With a sample of 108, we found emotions and beliefs to significantly explain attitudes towards assisted dying. Knowledge of assisted dying practices was low amongst the sample. Our findings suggest that education of assisted dying is required, and that attitudes towards assisted dying in the Australian community are underpinned by beliefs and emotions.

The unmet needs of carers of patients diagnosed with sarcoma: A qualitative study.

OBJECTIVE: Sarcoma is a rare cancer that may result in reduced mobility, social isolation, poorer mental health, and ongoing medical issues for patients. Family carers play a crucial role in supporting patients throughout their sarcoma journey. Despite the aggressive and debilitating nature of the disease, the unmet needs of these carers are yet to be explored. The aim of this study was to explore the unmet needs of carers of patients diagnosed with sarcoma. METHODS: An exploratory qualitative research design with a social constructionist epistemology was used. Participants were carers of patients diagnosed with a sarcoma (n = 33). Semi-structured interviews were conducted with carers of patients who completed treatment for sarcoma and also bereaved carers (BC). Interviews were transcribed verbatim and analysed using thematic analysis. FINDINGS: Four overarching themes were identified: support with medical aspects of caregiving, support for self, needing information about the patient, and financial support. Participants recognised that they needed psychosocial support, however, many were reluctant to access support as they perceived this to be prioritising their own needs instead of the patients'. They also needed more information about the patients' disease and how to navigate the health system. CONCLUSIONS: Family carers for patients with sarcoma have onerous responsibilities that affect their ability to access care for themselves and their family. Providing more holistic patient care and carer-specific information and training could reduce carer burden. Establishing support groups specific to carers and BC of patients diagnosed with sarcoma could provide opportunities for social interaction and psychosocial support.

The role of psychosocial support in the experiences of people living with advanced cancer: A qualitative exploration of patients' perspectives.

BACKGROUND: People living with advanced cancer experience significant distress and reduced quality of life due to their symptom burden and life-limiting prognosis. Limited qualitative research has investigated their experiences accessing psychosocial supportive care, and how it meets their needs. AIM: To explore patients' perspectives of the role of psychosocial support in their experiences of living with advanced cancer. METHODS: This study used an exploratory qualitative research design and drew upon a social constructionist interpretive framework. Semi-structured interviews were conducted with 23 participants. Participants were asked about their experiences accessing and using psychosocial support following their diagnosis. Audio-recorded interviews were transcribed and analysed using deductive thematic analysis. RESULTS: The following six themes can be used to describe participants' experiences with psychosocial support: (1) accessing different types of support, (2) appreciating support, (3) need, (4) difficulties accessing support, (5) knowing about support and (6) asking for support. Sources of psychosocial support included family and friends, health professionals, and psychosocial supportive care services. Not all participants were able to access care that met their needs; barriers included suitability of available support, accessibility and stigma surrounding support use. CONCLUSION: Participants experienced broad variation in their awareness and access to psychosocial support services to meet their needs. Providers of psychosocial supportive care for advanced cancer patients need to consider service accessibility issues. Future psychosocial interventions targeting people living with advanced cancer should consider these issues during development and implementation.

Does voluntary assisted dying cause public stigma for the bereaved? A vignette-based experiment.

OBJECTIVE: Studies in countries where assisted dying is legal show that bereaved people express concern over the potential for social disapproval and social stigma because of the manner of death. There are indications that voluntary assisted dying is judged as less acceptable if the deceased is younger. A vignette-based experiment was used to determine whether public stigma (i.e., negative emotional reactions and desired social distance) and expected grief symptoms are higher for conjugally bereaved people through voluntary assisted dying (vs. long-term illness), when the deceased is a young adult (vs. older adult). METHOD: A 2 × 2 randomized factorial design was conducted with 164 Australian adults (130 women, 34 men, Mage = 37.69 years). Each participant was randomized online to read one of four vignettes and completed measures of anger, fear, prosocial emotions, desire for social distance, and expectations of grief symptomatology. RESULTS: A multivariate analysis of variance (MANOVA) was conducted. Death at a young age (28 years) was significantly associated with stronger negative emotional reactions of fear ($\eta _p^2 = 0.04$, P = 0.048) and anger ($\eta _p^2 = 0.06$, P = 0.010). There were no differences in outcomes associated with the mode of death, nor was there an interaction between mode of death and age group. SIGNIFICANCE OF RESULTS: Concerns that voluntary assisted dying elicits public stigma appear unfounded. The fact that participants reported significantly higher anger and fear in response to bereaved people experiencing loss at a younger (vs. older) age, irrespective of cause of death, indicates that young people who lose their spouse might benefit from additional support.

A Qualitative Exploration of Seriously Ill Patients' Experiences of Goals of Care Discussions in Australian Hospital Settings.

BACKGROUND: Goals of care (GOC) is a communication and decision-making process that occurs between a clinician and a patient (or surrogate decision-maker) during an episode of care to facilitate a plan of care that is consistent with the patient's preferences and values. Little is known about patients' experiences of these discussions. OBJECTIVE: This study explored patients' perspectives of the GOC discussion in the hospital setting. DESIGN: An explorative qualitative design was used within a social constructionist framework. PARTICIPANTS: Adult patients were recruited from six Australian hospitals across two states. Eligible patients had had a GOC discussion and they were identified by the senior nurse or their doctor for informed consent and interview. APPROACH: Semi-structured individual or dyadic interviews (with the carer/family member present) were conducted at the bedside or at the patient's home (for recently discharged patients). Interviews were audio-recorded and transcribed verbatim. Data were analysed for themes. KEY RESULTS: Thirty-eight patient interviews were completed. The key themes identified were (1) values and expectations, and (2) communication (sub-themes: (i) facilitators of the conversation, (ii) barriers to the conversation, and (iii) influence of the environment). Most patients viewed the conversation as necessary and valued having their preferences heard. Effective communication strategies and a safe, private setting were facilitators of the GOC discussion. Deficits in any of these key elements functioned as a barrier to the process. CONCLUSIONS: Effective communication, and patients' values and expectations set the stage for goals of care discussions; however, the environment plays a significant role. Communication skills training and education designed to equip clinicians to negotiate GOC interactions effectively are essential. These interventions must also be accompanied by systemic changes including building a culture supportive of GOC, clear policies and guidelines, and champions who facilitate uptake of GOC discussions.

The unmet needs of patients with sarcoma.

OBJECTIVE: Sarcoma is a rare cancer that imposes a significant burden on the lives of patients. Many survivors have long-term disability as a result of treatment and the disease. Patients often experience functional issues, poorer mental health, reduced quality of life, and interpersonal issues. There is a need to explore the unmet needs of sarcoma patients as it is unclear how these issues are being addressed. The aim of this study was to explore the unmet needs of patients who have been diagnosed with sarcoma. METHODS: The participants were individuals previously diagnosed with a sarcoma (n = 22). Participants completed a semi-structured interview about their unmet needs relating to sarcoma. The transcripts were analyzed using thematic analysis. RESULTS: Five overarching themes were identified: daily living, financial needs, lack of information, need for a community, and navigating the healthcare system. Participants reported a range of practical needs, including transport, limited understanding of their treatments, and financial issues. Participants also described a need to connect with people who had gone through similar experiences. CONCLUSIONS: Sarcoma patients have fundamental needs that affect their capacity to live their life in the best possible way. Health services need to better facilitate sarcoma patients at each stage of their experience by providing individualized referrals, support, and coordination. Support interventions are needed to help patients adjust to sarcoma and to improve their quality of life as an outpatient. Connecting patients with sarcoma support groups may provide them with more relevant and intimate support.

From the carer's mouth: A phenomenological exploration of carer experiences with head and neck cancer patients.

OBJECTIVE: Receiving a diagnosis of head and neck cancer is devastating for patients and family carers and causes high levels of distress. Previous studies report that carer distress levels exceed that of patients, but go largely unnoticed by health professionals. To date, there is a paucity of studies that have described carers' perspectives of the lived experience of caring for a loved one diagnosed with head and neck cancer. The aim of this study was to explore the lived experiences of carers of patients diagnosed with head and neck cancer. METHODS: This qualitative study was informed by descriptive phenomenology. Carers of patients who had been diagnosed with head and neck cancer within the last 6 years were recruited from participating hospitals in Perth, Western Australia. Semi-structured interviews were conducted with 20 carers of patients diagnosed with head and neck cancer. Thematic analysis was conducted to gain an understanding of participants lived experiences. RESULTS: Key themes identified were: Silent Suffering, Gamut of Emotions, Causal Attribution, Changing Priorities, Gaining Support, and Coping. The changing priorities themes highlights that carers prioritised (a) being available for their loved one and (b) taking an active role in managing head and neck cancer symptoms and side effects. CONCLUSIONS: Carers of patients diagnosed with head and neck cancer experience distress. Instead of seeking support, carers often elected to suffer in silence. Implications for practice include screening for carer distress and providing specific interventions focused on caring for someone diagnosed with head and neck cancer.

Effect of caregiving at end of life on grief, quality of life and general health: A prospective, longitudinal, comparative study.

BACKGROUND: Determining the effect of caregiving and bereavement remains a challenge. To date, no study has employed a comparison group to investigate caregivers' grief, quality of life and general health in relation to non-caregivers. AIM: We aimed to determine how caregivers' grief, quality of life and general health changed following death compared to non-caregivers and whether pre-death grief predicted these outcomes. DESIGN: A prospective, longitudinal study of family caregivers and a comparison group matched for age, gender and postcode was conducted. All participants completed questionnaires at four points - once pre-death and three times post-death (3-4 months, 6-7 months and 9-10 months). SETTING/PARTICIPANTS: Participants (N = 70) were family caregivers of persons receiving palliative care, mostly for cancer, recruited from three palliative care providers in Western Australia and matched comparisons recruited from advertisements. RESULTS: There were significant differences between the caregivers' and comparisons' grief, general health and quality of life at pre-death, 3-4 months and 6-7 months post-death, but not at 9-10 months post-death. The rate of progression in these constructs following death was independent from the intensity of pre-death grief. However, caregiver prolonged grief score significantly predicted prolonged grief score at 6-7 and 9-10 months post-death. CONCLUSION: It took 9-10 months for the caregivers' grief, general health and quality of life to correspond to the comparison group. These findings present an opportunity for palliative care research and practice to consider how best to support the majority of caregivers without grief complications so that their pre- and post-death support needs are realised.

The perceived effect of parental cancer on children still living at home: According to oncology health professionals.

OBJECTIVE: How children are affected by their parent's diagnosis is limited in the literature, and children are typically not considered in current clinical practice. Despite suggestion that the patient's oncology team are well placed to support their children, this is yet to be sufficiently explored. This study aimed to explore how oncology healthcare professionals (HPs) perceive children are affected by a parent's diagnosis of cancer. METHODS: This qualitative study was informed by principles of grounded theory and embedded within a social constructivist framework. 15 health professionals working in oncology were interviewed using a semi-structured format. Data were analysed using methods of constant comparison. RESULTS: From the perspective of HPs, when a parent is diagnosed with cancer, their dependent children are rendered invisible. Factors within the (a) clinical healthcare system and (b) the families' psychosocial context were identified, which contribute to the invisibility of children. CONCLUSION: HPs are well-placed to facilitate an entry point into the healthcare system for patients' children; however, this is not occurring due to children's lack of visibility. Clinical and psychosocial barriers need to be addressed to ensure HPs are visibly aware of all children and thus able to appropriately support, intervene or refer on.