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1.
J Fam Nurs ; 30(1): 30-40, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38014512

RESUMO

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.


Assuntos
Avós , Neoplasias , Criança , Adulto , Humanos , Idoso , Pesquisa Qualitativa , Filhos Adultos , Relação entre Gerações
2.
J Neurooncol ; 161(3): 501-513, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36658381

RESUMO

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.


Assuntos
Cuidadores , Glioma , Humanos , Qualidade de Vida , Glioma/terapia , Ansiedade , Estudos Longitudinais
3.
Psychooncology ; 32(3): 401-407, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-36582171

RESUMO

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.


Assuntos
Neoplasias de Cabeça e Pescoço , Sobreviventes , Adulto , Humanos , Pesquisa Qualitativa , Pessoal de Saúde , Adaptação Fisiológica , Qualidade de Vida
4.
Psychooncology ; 32(6): 980-988, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37084182

RESUMO

OBJECTIVES: Ongoing access to psychosocial support is important to maintain the well-being of people with brain tumor (PwBT) and their families; yet, there is limited knowledge of psychosocial care access. This qualitative study aimed to develop an understanding of psychosocial support pathways specific to PwBT from the perspectives of Australian healthcare professionals. METHODS: Semi-structured interviews were conducted with 21 healthcare professionals working in hospital and community services supporting PwBT and their family members. Transcribed interviews were coded and analyzed thematically. RESULTS: The three major themes identified were: (1) Challenges in fitting people into the care system within existing pathways; (2) Benefits of longer-term care coordination and interdisciplinary connections; and (3) Brain tumor affects the whole family. Despite established psychosocial care pathways, service access varied and lacked continuity for individuals with lower-grade glioma and benign tumors across the illness trajectory. CONCLUSIONS: Healthcare professionals recognize the need for improved access to care coordination and multidisciplinary psychosocial care tailored to the varying needs of PwBT and their families.


Assuntos
Neoplasias Encefálicas , Reabilitação Psiquiátrica , Humanos , Sistemas de Apoio Psicossocial , Austrália , Família , Neoplasias Encefálicas/terapia , Atenção à Saúde
5.
Death Stud ; 47(10): 1094-1103, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-36786747

RESUMO

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.


Assuntos
Luto , Glioma , Humanos , Cuidadores/psicologia , Pesar , Ansiedade/psicologia
6.
J Fam Nurs ; 29(2): 155-165, 2023 05.
Artigo em Inglês | MEDLINE | ID: mdl-36715163

RESUMO

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.


Assuntos
Pai , Neoplasias , Masculino , Feminino , Criança , Humanos , Pai/psicologia , Mães/psicologia , Pesar , Pesquisa Qualitativa
7.
J Neurooncol ; 157(3): 475-485, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35397081

RESUMO

PURPOSE: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. METHODS: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. RESULTS: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93-100%) and mental health professionals (60-85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. CONCLUSIONS: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pathways.


Assuntos
Cuidadores , Glioma , Austrália , Cuidadores/psicologia , Estudos Transversais , Glioma/psicologia , Glioma/terapia , Humanos , Cuidados Paliativos
8.
Psychooncology ; 31(12): 2074-2085, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36086830

RESUMO

PURPOSE: This study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG). METHODS: In this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups. RESULTS: One hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress. High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distress over time. The highest unmet needs in people with HGG and high distress were disease specific changes in mental ability and physical side effects. CONCLUSION: This study demonstrates people with HGG experience ongoing distress and highlights a need for continuous distress and unmet needs screening and referrals.


Assuntos
Neoplasias Encefálicas , Glioma , Humanos , Necessidades e Demandas de Serviços de Saúde , Estudos Prospectivos , Neoplasias Encefálicas/terapia , Neoplasias Encefálicas/patologia , Inquéritos e Questionários , Apoio Social , Qualidade de Vida
9.
Psychooncology ; 31(8): 1313-1321, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-35332965

RESUMO

OBJECTIVES: This study aimed to scope the psychological support practices of Australian health professionals providing supportive care to adults with primary brain tumor. METHOD: Health professionals from multidisciplinary organizations and cancer support services completed an online survey focused on psychological support for people with brain tumor (PwBT) and family members, and perceived barriers or gaps in support provision. RESULTS: 107 professionals, mainly from psychology (45%), nursing (20%), and social work (10%) backgrounds, completed the survey. Scope of practice differed according to discipline, with psychologists and nurses most likely to screen for psychological distress (71%-76%), and psychologists more typically providing at least one psychological support session (78%). Psychologists were more likely to screen for cognitive impairment (31%), whereas nurses and social workers more commonly provided family-based support (62%-73%). Psychological support was more frequently provided in the long-term management phase (78%) than early post-diagnosis/treatment (45%). System-level barriers to accessing psychological support were most frequently identified, which included limited resources and funding, insufficient staff time, lengthy waitlists and costs, poor service coordination, and lack of staff with brain tumor-specific training. CONCLUSIONS: The provision of psychological support for PwBT varies according to discipline, setting and management phase. Further research on different models of psychosocial care is needed to inform strategies to address organizational and policy factors impacting professionals' scope of practice.


Assuntos
Neoplasias Encefálicas , Pessoal de Saúde , Adulto , Austrália , Neoplasias Encefálicas/terapia , Família , Pessoal de Saúde/psicologia , Humanos , Assistentes Sociais
10.
Support Care Cancer ; 30(8): 6817-6826, 2022 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-35536328

RESUMO

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.


Assuntos
Neoplasias , Adulto , Austrália , Pessoal de Saúde , Humanos , Neoplasias/terapia , Pesquisa Qualitativa
11.
Support Care Cancer ; 30(5): 4073-4080, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35066666

RESUMO

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.


Assuntos
Cuidadores , Neoplasias de Cabeça e Pescoço , Cuidadores/psicologia , Emoções , Neoplasias de Cabeça e Pescoço/terapia , Humanos , Motivação , Pesquisa Qualitativa
12.
J Pediatr Psychol ; 47(2): 148-157, 2022 02 14.
Artigo em Inglês | MEDLINE | ID: mdl-34865100

RESUMO

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.


Assuntos
COVID-19 , Neoplasias , Adulto , Austrália/epidemiologia , Criança , Feminino , Humanos , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Pandemias , Pais , SARS-CoV-2
13.
Qual Health Res ; 32(12): 1795-1808, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35976776

RESUMO

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.


Assuntos
Mães , Neoplasias , Adaptação Psicológica , Adolescente , Austrália , Criança , Aconselhamento , Feminino , Humanos , Lactente , Recém-Nascido , Mães/psicologia , Neoplasias/terapia , Gravidez , Pesquisa Qualitativa
14.
Psychooncology ; 30(9): 1405-1419, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33909328

RESUMO

OBJECTIVE: To determine the reported effect of online communication skills training (CST) on health professional (HP) communication skills and patient care outcomes in cancer and palliative care. METHODS: Primary research published in English between January 2003 and April 2019 was identified in bibliographic databases including Medline, Embase and Proquest (Prospero: CRD42018088681). An integrated mixed-method approach included studies describing a CST intervention and its effect, for cancer or palliative care HPs, delivered online or blended with an online component. Included studies' outcomes were categorised then findings were stratified by an evaluation framework and synthesised in an effect direction plot. Risk of bias was assessed using Joanna Briggs Institute's tools. RESULTS: Nineteen included studies (five randomised controlled trials, 11 pre-post, two post-test and one qualitative study) evaluated a CST intervention (median duration = 3.75 h; range 0.66-96 h) involving 1116 HPs, 422 students and 732 patients. Most interventions taught communication skills for specific scenarios and approximately half were delivered solely online and did not involve role plays. Online CST improved HPs' self-assessed communication skills (three studies, 215 participants), confidence (four studies, 533 participants), and objective knowledge (five studies, 753 participants). While few studies evaluated patient outcomes, CST may benefit observed communication skills in care settings (two studies, 595 participants). CONCLUSIONS: Online CST benefits oncology HPs' subjectively-reported communication skills and confidence, and objective knowledge. Translation to patient outcomes requires further investigation. The quality of research varied and few studies had a control group. We recommend improvements to study design, evaluation and implementation.


Assuntos
Neoplasias , Cuidados Paliativos , Comunicação , Pessoal de Saúde , Humanos , Oncologia , Neoplasias/terapia , Ensaios Clínicos Controlados Aleatórios como Assunto
15.
Psychooncology ; 30(3): 287-295, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33037707

RESUMO

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.


Assuntos
Acessibilidade aos Serviços de Saúde , Neoplasias/psicologia , Sistemas de Apoio Psicossocial , Qualidade de Vida/psicologia , Estigma Social , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Pessoal de Saúde/psicologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Índice de Gravidade de Doença , Apoio Social
16.
Support Care Cancer ; 29(10): 5973-5981, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33770258

RESUMO

PURPOSE: Anxiety is commonly observed in oncology patients but infrequently screened, assessed or addressed. According to psychosocial guidelines, all healthcare professionals, including radiation therapists, are responsible for the psychosocial care of patients. Radiation therapists (RTs) interact with patients daily throughout treatment; however, little research exists to evaluate RTs' ability to identify and manage patients' psychosocial needs. This study aimed to determine if RTs can detect and manage patient anxiety. METHOD: A cross-sectional, mixed-methods survey containing two clinically relevant vignettes was developed. Two fictitious patients were presented to elicit responses reflective of RTs' experiences and judgements in the recognition and management of anxiety. Surveys were distributed via email in Australia, New Zealand and Canada. Ethical approval was obtained from the University of Sydney (2016/227) and informed consent was obtained from participants. RESULTS: Eligible and complete surveys were received from 582 respondents (240 (41.2%) from Australia; 78 (13.4%) New Zealand; 264 (45.4%) Canada). Almost all respondents endorsed a relevant descriptor of anxiety (vignette 1, 577 (99.1%); vignette 2, 579 (99.5%)). For both vignettes, the most frequently endorsed management strategy was to acknowledge the patients' feelings and encourage them to express their concerns (vignette 1, 548 (94.2%); vignette 2, 455 (78.2%)). CONCLUSION: RTs in Australia, New Zealand and Canada are able to detect anxiety and endorse a strategy to manage patients experiencing anxiety depicted in written vignettes. Exploring RTs' abilities to detect and manage patient anxiety whilst in the high-pressure clinical environment is an important next step.


Assuntos
Radioterapia (Especialidade) , Pessoal Técnico de Saúde , Ansiedade/diagnóstico , Ansiedade/etiologia , Ansiedade/terapia , Transtornos de Ansiedade , Estudos Transversais , Humanos
17.
Eur J Cancer Care (Engl) ; 30(5): e13453, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33877719

RESUMO

OBJECTIVE: To describe glioblastoma patients' and carers' perspectives of participating in a tailored exercise intervention during chemoradiotherapy. METHODS: A pilot study was conducted to evaluate if exercise was a feasible and safe therapy in patients with glioblastoma undergoing chemoradiotherapy. Patients received a supervised exercise intervention involving an individualised prescription of moderate-intensity aerobic and resistance exercise twice weekly, performed at the hospital when they attended for treatment. Semi-structured interviews were conducted with participants and their carers. Recordings were analysed using thematic analysis. RESULTS: 19 patients and 15 carers participated. Benefits and challenges of participating in the exercise intervention were described. Benefits included an individually tailored exercise program, improvements in health, regaining a sense of control, interacting with people, keeping active and benefits for carers. Challenges included managing symptoms associated with diagnosis and treatment, juggling treatment and exercise, and difficulties engaging in the program. CONCLUSION: Patients and carers expressed positive perceptions and experiences of participating in exercise during chemoradiotherapy; however, some challenges were experienced. These results support the quantitative pilot study which demonstrated that supervised exercise is feasible, safe and well tolerated by patients receiving chemoradiotherapy for glioblastoma. Randomised controlled trials now need to be conducted with this population.


Assuntos
Cuidadores , Glioma , Quimiorradioterapia , Terapia por Exercício , Humanos , Projetos Piloto , Pesquisa Qualitativa
18.
J Gen Intern Med ; 35(12): 3572-3580, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33037591

RESUMO

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.


Assuntos
Comunicação , Planejamento de Assistência ao Paciente , Adulto , Austrália , Família , Hospitais , Humanos , Pesquisa Qualitativa
19.
Eur J Cancer Care (Engl) ; 29(6): e13321, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32902057

RESUMO

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.


Assuntos
Neoplasias , Pais , Criança , Pessoal de Saúde , Humanos , Oncologia , Neoplasias/terapia , Pesquisa Qualitativa
20.
Eur J Cancer Care (Engl) ; 29(6): e13284, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32656882

RESUMO

OBJECTIVE: Patients are often anxious and lack knowledge of radiotherapy prior to commencing treatment. Evidence-based interventions are required to reduce patient anxiety and increase patient preparation before treatment. This study is part of a larger project examining the effectiveness of an innovative preparatory intervention "RT Prepare," to reduce patient psychological distress prior to treatment for breast cancer. This study aimed to explore patients' and RTs' perceptions about the "RT Prepare" intervention and was conducted to assist with refinement of the intervention for future implementation. METHODS: Semi-structured interviews were conducted with patients and radiation therapists (RTs) to elicit their perspectives on the "RT Prepare" intervention. Thematic analysis was used to analyse the data. RESULTS: Telephone interviews were conducted with 21 patients who had received the intervention and 15 RTs who had delivered the intervention. Patients and RTs described the intervention positively and highlighted that it was beneficial for preparing patients for treatment planning and treatment. The overarching themes were communication skills; preparation; information provision and dedicated space and time. CONCLUSION: RT Prepare was well received by patients and RTs. Practice implications Based on the results of this study and our quantitative findings, implementation of the intervention would be beneficial for both patients and RTs.


Assuntos
Angústia Psicológica , Radioterapia (Especialidade) , Pessoal Técnico de Saúde , Ansiedade , Humanos , Encaminhamento e Consulta
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