P09.05.A Caregiver café in a neuro-oncological context

Journal of Neuro-Oncology, 2011

The purpose of this study is to identify the needs of brain tumor patients and their caregivers to provide improved health services to these populations. Two different questionnaires were designed for patients and caregivers. Both questionnaires contained questions pertaining to three realms: disease symptoms/treatment, health care provider, daily living/finances. The caregivers' questionnaires contained an additional domain on emotional needs. Each question was evaluated for the degree of importance and satisfaction. Exploratory analyses determined whether baseline characteristics affect responder importance or satisfaction. Also, areas of high agreement/ disagreement in satisfaction between the participating patient-caregiver pairs were identified. Questions for which [50% of the patients and caregivers thought were ''very important'' but [30% were dissatisfied include: understanding the cause of brain tumors, dealing with patients' lower energy, identifying healthful foods and activities for patients, telephone access to health care providers, information on medical insurance coverage, and support from their employer. In the emotional realm, caregivers identified 9 out of 10 items as important but need further improvement. Areas of high disagreement in satisfaction between participating patient-caregiver pairs include: getting help with household chores (P value = 0.006) and finding time for personal needs (P value \ 0.001). This study provides insights into areas to improve services for brain tumor patients and their caregivers. The caregivers' highest amount of burden is placed on their emotional needs, emphasizing the importance of providing appropriate medical and psychosocial support for caregivers to cope with emotional difficulties they face during the patients' treatment process.

2000

The rapid onset and progression of a brain tumor, cognitive and behavioral changes, and uncertainty surrounding prognosis are issues well known to health practitioners in neuro-oncology. We studied the specific challenges that family caregivers face when caring for patients experiencing the significant neurocognitive and neurobehavioral disorders associated with brain tumors. We selected 25 family caregivers of adult brain tumor patients to represent the brain tumor illness trajectory (crisis, chronic, and terminal phases). Interviews documented caregiving tasks and decision-making and information and support needs. Themes were permitted to emerge from the data in qualitative analysis. We found that the family caregivers in this study provided extraordinary uncompensated care involving significant amounts of time and energy for months or years and requiring the performance of tasks that were often physically, emotionally, socially, or financially demanding. They were constantly challenged to solve problems and make decisions as care needs changed, yet they felt untrained and unprepared as they struggled to adjust to new roles and responsibilities. Because the focus was on the patient, their own needs were neglected. Because caregiver information needs are emergent, they are not always known at the time of a clinic visit. Physicians are frequently unable to address caregiver questions, a situation compounded by time constraints and cultural barriers. We provide specific recommendations for (1) improving the delivery of information; (2) enhancing communication among patients, families, and health care providers; and (3) providing psychosocial support for family caregivers.

Journal of Neuro-Oncology, 2011

Quality of life and well-being in caregivers are usually partly neglected since all attention is focused on patients and the way they react to the illness. Carers also usually neglect their own needs, especially when the illness of the patient is as complex as a brain tumor. The aim of this study is to investigate how caregivers deal with a diagnosis of brain tumor in their relatives and how they manage their quality of life and psychosocial well-being. One hundred primary caregivers of patients with brain tumors were interviewed and were asked to fill in selfadministered questionnaires detecting multidimensional levels of quality of life, anxiety, depression, and psychosocial reaction to the patient's illness. Data were related with some functional and psychosocial information collected about the patient's disease. Caregivers try to react to the illness of their relatives by mobilizing their physical reaction and growing their self-esteem, but they live with a clinically significant impairment of their quality of life, and experience a deep level of anxiety and depression. The caregivers' burden appears mainly in their ability to provide care and in financial strain. The length of disease and the functional status of patients significantly influence caregivers' psychosocial well-being. Despite the appearance they want to show their affected relatives, caregivers suffer from deep limitation in their quality of life. The relevance of caregivers' burden suggests the importance of psychological support to improve reaction to the illness.

Research in Nursing & Health, 2006

The purpose of this cross-sectional, descriptive study was to identify predictors of distress for family caregivers of persons with a primary malignant brain tumor (PMBT). The effect of the care recipient's functional, cognitive, and neuropsychiatric status on caregiver burden and depressive symptoms was examined through telephone interviews with 95 caregivers. Care recipients' neuropsychiatric status consistently affected caregivers' depressive symptoms and burden, and assisting with activities of daily living affected burden related to caregivers' schedules and health. The care recipient's cognitive status and need for assistance with instrumental activities of daily living did not affect any outcome variable. Results may

The Cochrane library, 2019

Macmillan/You Gov 2016 Macmillan/You Gov. Under pressure: the growing strain on cancer carers. www.macmillan.org.uk/documents/campaigns/ under-pressure-the-growing-strain-on-cancer-carersmacmillan-cancer-support-september-2016.pdf (accessed prior to 17 June 2019). Madsen 2011 Madsen K, Poulsen HS. Needs for everyday life support for brain tumour patients' relatives: systematic literature review.

Supportive Care in Cancer, 2006

Abstract Goals of work: The diagnosis and treatment of a brain tumour may result in long-term changes in a patient's functional and social abilities and/or in a greatly reduced life span. A qualitative investigation was conducted to examine the supportive care needs of patients with brain tumour and their carers. Materials and methods: Overall, 18 patients and 18 carers participated in focus groups or telephone interviews, following a structured interview guide to elicit supportive care services of importance to these patients and carers. Main results: Six major themes were identified using the framework anal-ysis method, including needs for information and coping with uncertainty, practical support, support to return to pretreatment responsibilities or prepare for long-term care, support to deal with social isolation and organize respite care, support to overcome stigma/discrimination and support to discuss potentially reduced life expectancy. Conclusions: Five recommendations to improve service delivery include: assignment of a dedicated member of the care team or case manager; proactive dissemination of information, education and psychosocial support; access to objective assessment of neuropsychological functioning; facilitating easier access to welfare payments; and services facilitating communication about difficult illness-related topics. Provision of services along these recommendations could improve supportive care of brain tumour patients and their carers.

BMJ Open, 2017

IntroductionPatients with gliomas generally present cognitive, neuropsychiatric and functional deficits. Although previous research has shown that their caregivers present a poor quality of life and poor mental health, only a few studies have tested in a comprehensive way which deficits/preserved abilities of patients predominantly impact their caregivers. Furthermore, only a few studies have focused on the social impact of gliomas, which may also damage the caregivers’ quality of life. Therefore, this cross-sectional study aims to investigate which patients’ impairments are particularly deleterious for the caregivers and whether the histological characteristics of the gliomas also affect their quality of life.Methods and analysisIn order to examine these research questions, this study intends to include 180 patients (60 patients with grade II gliomas, 60 patients with grade III gliomas and 60 patients with grade IV gliomas), their caregivers and 60 healthy controls. While patients ...

Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2017

Informal caregivers (ICs) provide care and improve the quality of life of patients with malignant brain tumor. We analyze the impact of their involvement on themselves from a triple perspective. Home-dwelling patients with primary malignant brain tumor underwent a medical examination. ICs burden was evaluated by a self-administered postal questionnaire. Objective burden (Informal Care Time, ICT), subjective burden (Zarit Burden Inventory, ZBI), and financial burden (valuation of lost earnings using the Replacement and Opportunity Cost Methods, RCM, OCM) were evaluated. ICs (N = 84) were principally women (87 %) and spouses (64 %), of mean age 55 years, who assisted patients of mean age 53 years and with a mean KPS score of 61 (range = 30-90, med = 60). Subjective burden was moderate (mean ZBI = 30). Objective burden was high (mean ICT = 11.7 h/day), mostly consisting of supervision time. Higher subjective and objective burden were associated with poorer functional status (KPS) but n...

In 2007, the Institute of Medicine issued a report outlining the components of effective cancer care, which included addressing the psychosocial needs of informal caregivers of patients with cancer. 1 This aspirational goal is a challenge given the growing population of cancer survivors and the associated number of informal caregivers. In 2013, it was estimated that there were 4 million informal caregivers for adult patients with cancer in the United States, 2 although this was almost certainly an underestimate given the 14.5 million cancer survivors in the United States at the beginning of 2014. 3 The extent of care provided by these informal caregivers is significant, far exceeding the care provided by professional caregiv-ers: averaging 8.3 hours per day for 13.7 months. 4 As cancer treatment has become more complicated and more often delivered in the outpatient setting, the care and well-being of patients with cancer has become increasingly dependent on informal caregivers. These shifts in cancer treatment have occurred at the same time that informal caregivers have become increasingly likely to be employed outside the home, and thus are juggling the demands of work and caregiving. There is clear evidence that caregivers have psychosocial needs. As described in the article in the current issue of Cancer , Sklenarova et al surveyed cancer caregiver and patient dyads regarding their unmet needs, distress, anxiety, and depression. 5 Their results indicated that the caregivers were more distressed and more anxious than the patients. This result is consistent with a large and growing body of literature that has documented the significant distress experienced by caregiv-ers of patients with cancer. Indeed, caregivers experience a range of psychological complications, 6 including significant mood disturbance. Although some studies have reported rates of anxiety and depression for caregivers that are comparable to those of the patients for whom they provide care, 7,8 others have reported rates for caregivers that surpass those of patients. 7,9,10 For example, rates of depression of between 12% and 59% and rates of anxiety of between 30% and 50% 11,12 have been reported in samples of family caregivers, in comparison with rates of depression of between10% and 25% 13 and rates of anxiety of between 19% and 34% 14 noted in patient samples. Higher rates of depressive and anxious symptomatology are found among caregivers of patients with cancer who are receiving active treatment, 15 survivors after treatment, 16 and patients with advanced disease, 9 in comparison with the rates for the patients for whom they provide care. Therefore, across all points in the caregiving trajectory, cancer caregivers represent a population at significant risk of psychiatric morbidity and potentially in need of psychosocial services. Sklenarova et al found that 43.6% of caregivers reported more than10 unmet needs and only 14.4% reported no unmet needs. 5 In comparison, Soothill et al reported that13.8% of the caregivers they surveyed had 10 or more unmet needs and 57.4% indicated no unmet needs. 17 The latter study documented that caregivers reported more unmet needs than patients, and although Skelnarova et al also surveyed patients about their unmet needs, unfortunately they did not report these data in their article nor was a comparison made of the two groups. The most common needs identified in the study by Sklenarova et al concern fears regarding the patient's deterioration and the risk of disease recurrence and feelings about death and dying. 5 Other needs included information concerning alternative therapies, benefits and side effects of treatment, and the patient's prognosis. The unmet needs identified in the study by Soothill et al were more likely to be either practical or emotional in nature. 17 These differences may be related to the different assessment measures used in these two studies, the different cultures assessed, or some other undetermined difference. Unfortunately, as is often the case in

ABSTRACT Title: Caring For Cancer Patient: What Does It Take? Background Cancer disease creates mental terror in human mind, even when it is curable now a days. Cancer affects physically as well as create mental disturbance to the patients and their caregivers. Family members are the primary caregivers of persons with mental illnesses in most of the eastern world. In India, more than 90% of patients with mental illness live with their families (Chadda, 2001). Family Caregivers are those have a close relationship with the patient (e.g. Wife, husband, parent, brother, and sister). Caregivers may have less time to spend with friends, fulfil family obligations, or to pursue leisure activities (Gilleard, Gilleard, Gledhill, & Whittick, 1984; Kosberg & Cairl, 1986; Zarit, Reever, & Bach- Petersen, 1980). Furthermore, caregivers are often faced with difficult care giving tasks while faced with verbal, physical aggression, confusion (Teri, Truax, Logsdon, Uomoto, Zarit, & Vitaliano, 1992) and behaviour problems of demented care recipients. Expectations from caregiver starts at home with little preparation and minimum medical support. Although the cancer patient require much more medical support with intensive care. Apart from this he/she also requires emotional support from the family members and family caregivers. As it is common that all the attention is focused on the cancer patient’s care and wellbeing but the plight of the immediate caregiver is forgotten. He/she suffers in may ways while caring the patient, loses social contacts, neglects his/her own health issues as well as it hamper the job profile. Mental health is defined as a state of well-being in which every individual realizes his or her own potential, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to her or his community (By WHO). An individual’s abilities, can cope with the normal stresses of life, can work productively and fruitfully, and is able to make a contribution to his or her community. As per present study author, mental health is defined as an individual to strength to cope up with day to day activity effectively. An estimated 20%–30% of family caregivers of patients with cancer report clinically significant distress (Pitceathly & Maguire, 2003), and positive associations between patients’ and caregivers’ psychological adjustment have been found (Hodges, Humphris, & Macfarlane, 2005; Northouse, Mood, Templin, Mellon, & George, 2000). It is important for caregivers to pay close attention to their emotional and mental health. The most frequently cited sources of caregiver compromise are: psychological impairment (Grunfeld, & Kurtz 2004); mood disturbance (Soothill, 2001); sleep disturbance (Carter, 2003; Carter & Chang 2000); fatigue (Jensen & Given 1993); impaired immune function (Kiecolt-Glaser 1991); Social isolation (Cameron 2002); feelings of helplessness and lack of control (Goldstein 2004); and insufficient skill to manage the ill family members’ symptoms (Nijboer 1999). It is just not about a psychological wellbeing. It also makes an impact on quality of life of the caregivers such as sleep disturbance, timely intake of food, less social interaction, unable to give full time in the work place etc. A recent review by Stenberg, Ruland, and Miaskowski, (2010), found that the most prevalent physical problems reported by caregivers included sleep disturbance, fatigue, pain, loss of physical strength, loss of appetite, and weight loss. The Constitution of the World Health Organization (WHO) defines health as "A state of complete physical, mental, and social well-being not merely the absence of disease or infirmity." Spilker divides quality of life into three levels in his pyramid (Spilker, 1996). The upper level is global quality of life and contains overall well-being and satisfaction with life as a whole. Health-related quality of life might be defined as health status components placed in the middle level and single aspects of health-related quality of life are defined as the level of specific parts of quality of life in the pyramid’s lowest level. A quality of life can be explained in a manner in which an individual carry out his normal activities without any stress. Caregiving disrupts social connectedness and activities as caregivers' energy and time are focused on the patient and their recovery (Stenberg, Ruland, and Miaskowski, 2010). Due to the caregiving responsibility and emotional attachment towards the cancer patient. This shows the relationship between the mental health and quality of life. The patient’s problems and needs can cause burdens for family caregivers because they are often unprepared to provide care for the patients at home (Cameron, Shin, Diane Williams, & Stewart, 2004) with little preparation and minimum medical support. In one of the previous study, cancer caregivers found that cancer affects all aspects of family caregivers including their physical, psychological, social, financial, and spiritual well-being (Girgis & Lambert, 2009; Klemm & Wheeler, 2005; Stenberg, Ruland, & Miaskowski, 2010;Wilkinson, 2010). This causes the poor quality of life of the primary or family caregivers. Janda’s study reported that lower quality of life, as measured by the Functional Assessment of Cancer Therapy-General, among caregivers of brain tumour survivors (n=70) recruited from the brain tumour support service offered by Cancer Council Queensland (Janda, Steginga, Dunn, Langbecker, Walker, and Eakin, 2008). But in another study by Kim and Schulz, (2009) 67.3% of caregivers (n=99) reported a moderate to high level of burden, cancer caregivers had higher levels of financial hardship, physical strain and emotional stress than caregivers of individuals with diabetes and frail elderly caregivers. Nonetheless, burden levels reported by cancer caregivers were comparable to those caring for an individual with dementia or AIDS, two other highly stress-inducing and challenging illnesses for caregivers. In 2005 study, the sample consisted of 49 Primary Caregivers (PCs) of women with breast cancer and 47 Primary Caregivers (PCs) of men with prostate cancer. Quality Of Life (QOL) was rated with the Medical Outcome Study Short Form (SF-36), and mental health with the Hospital Anxiety and Depression Scale (HADS). The findings were compared with age-adjusted norm data (norm). Physical QOL was significantly higher than norm in both genders, while mental QOL was significantly lower in male PCs. The level of anxiety was significantly higher than norm in both genders. No significant difference for level of depression was found in either gender, while caseness of HADS-defined depression was significantly more prevalent in female PCs compared with norm. PCs of both genders had significantly more anxiety than norm samples. Health care personnel in contact with PCs should consider screening them for mental symptoms and QOL and, if necessary, recommend further evaluation by their doctors (Grove, Dahl, Moum, & Fossa, 2005). Objectives Cancer creates the fear of death in patient and their caregivers. Apart from this caregiver also faces emotional problems such as shock, anxiety and depression. The aim of this survey is to study the impact of mental health and quality of life of the family caregivers’ cancer patients. Design It is quantitative and qualitative cross section study approach will be used for identifying the factors related to mental health and quality of life in caregivers with cancer patients. The data will be collected from the caregivers of patients suffering different cancers.The sample comprised of 60 (30 male and 30 female) family caregivers of cancer patients. Results This study indicated that most of the family caregivers display a normal(moderate) mental health and quality of life. Conclusions Overall finding shown that mental health and quality of life of the caregivers displayed moderated level. May be caregivers face problem in futures. So it is recommended to the family caregivers that they need to be required to take care of physical and mental health as well as their social relationships.