The Supportive Care Needs of Cancer Patients: a Systematic Review (original) (raw)
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The universal, situational, and personal needs of cancer patients and their main carers
European Journal of Oncology Nursing, 2003
The importance of psychosocial factors in the cancer journey for both patients and their carers has been recognised in UK health policy. The aim of this paper is to consider--(1) which needs are regarded as important by patients and their carers; (2) which are the unmet needs of patients and their carers. The study focuses on the responses of 233 paired cancer patients and their carers derived from a cross-sectional questionnaire survey in three health authorities in North West England. The majority of patient--carer pairs expressed the importance of having good relationships with health-care professionals and receiving good-quality information. These can be identified as 'universal'needs. A minority of patient--carer pairs expressed the importance of other kinds of needs.These items were mainly to do with managing daily life, emotions, and social identity and can be identified as 'situational'or 'personal' needs. Where there were discrepancies between patients and carers, patients were likely to identify more needs as important. In contrast, carers have more unmet needs, reflecting their comparative neglect. Broadly, 'universal' needs are being met, but 'situational' and 'personal' needs, particularly among carers, are relatively unmet and require greater attention on the part of nurses and primary care professionals. r
What are the unmet supportive care needs of people affected by cancer: An umbrella systematic review
Seminars in Oncology Nursing, 2023
The aim of this umbrella systematic review was to critically synthesize unmet supportive care needs of people affected by cancer. Data Sources: The Joanna Briggs Institute (JBI) umbrella review method provided an overall examination of the body of evidence that was available in relation to the unmet supportive care needs among people living with cancer. All qualitative, quantitative, and mixed methods reviews were included irrespective of review design. Electronic databases were searched using a wide range of search terms. All records were managed using the software package Endnote X21 and uploaded to Covidence systematic review software. Duplication of records were removed. A preselection eligibility criterion was applied to all records. Data extraction and methodological quality assessment was conducted independently by two reviewers, and a meta-level narrative synthesis conducted. Conclusion: A total 30 systematic reviews were included representing a total of 666 publications globally. Irrespective of the type of cancer there were many commonalities in relation to the reported experiences of unmet supportive care needs, which therefore enables the development of targeted future clinical trials, clinical guidelines, and policy contribution. In descending order of frequency, the highest unmet supportive care needs were related to psychological/emotional (30 out of 30), health system/information (29 out of 30), interpersonal/intimacy (21 out of 30), social (20 out of 30), physical (19 out of 30), family (18 out of 30), practical (16 out of 30), daily living (10 out of 30), spiritual needs (8 out of 30), patient-clinician communication (8 out of 30), and cognitive needs (5 out of 30). Implications for Nursing Practice: This umbrella review has underscored fundamental shortcomings in care delivery irrespective of the patient population and the type of cancer. People with cancer are continually reporting that their needs are not being met across many supportive care domains. It is time for change within the health care system and to full leverage multidisciplinary person-centered models of care to optimize recovery and survivorship experiences. In the meantime, policy makers and cancer care clinicians are encouraged to reflect on these findings to address individualized care needs.
What are the unmet supportive care needs of people with cancer? A systematic review
2009
Goals of work The identification and management of unmet supportive care needs is an essential component of health care for people with cancer. Information about the prevalence of unmet need can inform service planning/redesign. Materials and methods A systematic review of electronic databases was conducted to determine the prevalence of unmet supportive care needs at difference time points of the cancer experience. Results Of 94 articles or reports identified, 57 quantified the prevalence of unmet need. Prevalence of unmet need, their trends and predictors were highly variable in all domains at all time points. The most frequently reported unmet needs were those in the activities of daily living domain (1-73%), followed by psychological (12-85%), information (6-93%), psychosocial (1-89%) and physical (7-89%). Needs within the spiritual (14-51%), communication (2-57%) and sexuality (33-63%) domains were least frequently investigated. Unmet needs appear to be highest and most varied during treatment, however a greater number of individuals were likely to express unmet need post-treatment compared to any other time. Tumour-specific unmet needs were difficult to distinguish. Variations in the classification of unmet need, differences in reporting methods and the diverse samples from which patients were drawn inhibit comparisons of studies. Conclusion The diversity of methods used in studies hinders analysis of patterns and predictors of unmet need among people with cancer and precludes generalisation. Welldesigned, context-specific, prospective studies, using validated instruments and standard methods of analysis and reporting, are needed to benefit future interventional research to identify how best to address the unmet supportive care needs of people with cancer.
CARING FOR CANCER PATIENT: WHAT DOES IT TAKE
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.
Acta bio-medica : Atenei Parmensis, 2014
BACKGROUND AND AIM The literature on cancer patients agrees that most of the cancer patients' needs often remain unmet. How are these different needs perceived by patients, relatives and professionals? The present research has tried to make a contribution by analysing evidences of the needs, especially unmet, that different actors attribute to a cancer patient. METHOD A total of 42 Italian participants (76.2% women) took part in the study. Patients, relatives, physicians, nurses, social care assistants and volunteers participated separately in six focus groups. Three face-to-face interviews were conducted with psychologist, general practitioner and social worker. All focus groups/interviews were processed through an analysis of thematic content. RESULTS The results showed a priority given to the need for information, and also the importance of psychological and social support needs, confirming that they remain unmet. Differences between participants are visible by looking at the...
The Time Is Now: Assessing and Addressing the Needs of Cancer Caregivers Editorial
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
Behavioral Sciences, 2021
Starting from statistical data derived from the oncological field, some articles have highlighted the importance of communication in the patient–caregiver dyad and have considered the various roles involved in a cancer diagnosis situation. Thus, the question of how to intervene in terms of “quality of life” from the time of diagnosis to the recovery or death of a cancer patient, beyond the sanitary and physical dimensions, has become relevant. Therefore, the present narrative review aims to offer an overview of the state of the art in terms of the psychological treatment modalities of cancer patients, from the diagnosis to the post-surgery period. A total of 67 articles were collected and analyzed, in relation to (1) psychological constructs employed in the oncological field, (2) intervention models and (3) quality of life and well-being measurement and evaluation tools. We described these articles, differentiating between those focusing on the role of (1) the patient, (2) the careg...