unmet needs cancer caregivers
198492499
Unmet needs of family cancer caregivers predict quality of life in long term cancer survivorship
To identify demographic and caregiving characteristics associated with caregivers' unmet needs and to examine associations of caregivers' unmet needs with their quality of life at 2 years and 5 years since their patients' initial diagnosis. Family cancer caregivers completed prospective longitudinal surveys at 2 years (T1) and 5 years (T2) post diagnosis. Demographic and caregiving characteristics were measured at T1. Unmet needs and quality of life were measured at T1 and T2. Younger and spousal caregivers reported greater unmet needs (B 2.03, p .05) Independent of demographic characteristics, caregivers' perception that providing care to their relative with cancer was overwhelming was consistently associated with unfulfillment of their needs in various domains, concurrently and prospectively (B 2.50, p .05) across the long term survivorship phases. Findings highlight the contribution of earlier subjective caregiving stress to family caregivers' needs not being met both currently and years later, which, in turn, related to poorer quality of life across different family caregivership trajectories. Findings suggest identifying at risk subgroups of family caregivers based on demographics and assessing caregiving stress as a priority in psycho oncology research and clinical practices. Family caregivers' quality of life is affected by cancer survivors' illness trajectory many years after the initial cancer diagnosis, so are the caregivers' needs. Cancer survivorship care plan should take careful consideration of the nuanced long term contributions of caregivers' unmet needs to their specific aspects of quality of life.
Journal of Cancer Survivorship
Youngmee Kim Charles S Carver
204244248
Bereaved Family Cancer Caregivers' Unmet Needs: Measure Development and Validation.
PURPOSE/BACKGROUND Accumulating evidence shows that bereaved family caregivers report elevated distress for an extended period, which compromises their quality of life. A first step in the development of programs to enhance bereaved caregivers' quality of life should be determining the needs they experience to manage the loss, and the needs that are not being satisfied. Thus, this study aimed to develop a new measure to assess unmet needs among bereaved family caregivers. METHOD The 20 item Needs Assessment of Family Caregivers Bereaved to Cancer measure was developed and validated with bereaved cancer caregivers 5 (n 159) and 8 (n 194) years after the initial cancer diagnosis of the index patient, when stress in providing care to the patient was assessed. RESULTS Exploratory factor analysis yielded two primary factors: unmet needs for reintegration and unmet needs for managing the loss. Bereaved caregivers who were younger and ethnic minority, and who had greater earlier perceived stress of caregiving, reported their needs were more poorly met (t 2.33, p .05) The extent to which bereaved caregivers' needs to manage the loss were not perceived as being met was a consistent and strong predictor of poor adjustment to bereavement at both 5 and 8 year marks (t 1.96, p .05) beyond the effects of a host of demographic and earlier caregiving characteristics. CONCLUSION Findings support the validity of the Needs Assessment of Family Caregivers Bereaved to Cancer and suggest that interventions to help bereaved caregivers manage the loss by assisting their transition to re engagement in daily and social activities will benefit caregivers by mitigating bereavement related distress years after the loss.
Annals of behavioral medicine a publication of the Society of Behavioral Medicine
Youngmee Kim Charles S Carver Rachel S Cannady
196509483
Unmet Needs of Informal Cancer Caregivers: A Mixed Methods Approach to Identify Needs
Problem under investigation: Many cancer caregivers often have a number of unmet needs that leads to distress, burden, and poor patient outcomes. Objective: Identify unmet needs of informal cancer caregivers at Roswell Park, provide a compendium of local community resources, and recommend additional resources that other cancer centers in the nation utilize. Background literature and theoretical framework: In the United States there are more than 14.5 million cancer survivors. Cancer caregivers lack the knowledge, support, and self confidence to properly care for their loved ones. The theory of Caregiver Stress states that inputs, which are defined as internal and external factors, are associated with unmet needs and burden. Inputs have a direct impact on outcomes. Project methods: Mixed methods approach to data collection using the Caregiver SelfAssessment Questionnaire and focus groups. Email interviews were conducted with oncology experts at cancer centers around the nation. Results: Informal caregivers at Roswell Park expressed feelings of unmet needs and caregiver burden. Oncology experts at various cancer centers in the nation are concerned that caregivers at their institutes are not properly managed; however, a significant number of online and local resources for caregivers were identified but are likely not being utilized to the full potential. Potential significance: Enhance the caregiver role through knowledge of resources to minimize unmet needs and burden. Implications: Informing caregivers and healthcare providers of the resources available to them will help minimize unmet needs and lessen the degree of burden that will improve outcomes.
Jim Kerner
221085744
Passages of cancer caregivers' unmet needs across 8 years
Identifying and addressing caregivers' unmet needs have been suggested as a way of reducing their distress and improving their quality of life. However, the needs of family cancer caregivers are complex in the period of long term survivorship in particular because they may diverge as the patients' survivorship trajectory does, and that is what this study investigated.
Cancer
Youngmee Kim Charles S Carver Amanda Ting Rachel S Cannady
23392325
The interaction between informal cancer caregivers and health care professionals: a survey of caregivers' experiences of problems and unmet needs
PurposeIn order to meet the caregiving challenges, informal caregivers often need a substantial level of interaction with health care professionals (HCPs) This study investigated to which extent the cancer caregivers' needs regarding the interaction with HCPs are met and the associations between dissatisfaction with the interaction and socio demographic and disease related variables.MethodsIn a cross sectional questionnaire study, cancer patients with various diagnoses and disease stages were invited to pass on the 'cancer caregiving tasks, consequences and needs questionnaire' (CaTCoN) to up to three of their caregivers.ResultsA total of 590 caregivers (related to 415 (55 of 752 eligible patients) participated. Although many caregivers were satisfied, considerable proportions experienced problems or had unmet needs regarding the interaction with HCPs. Prominent problematic aspects included optimal involvement of the caregivers in the patients' disease, treatment and/or care (30 were dissatisfied) attention to the caregivers' wellbeing (e.g. 51 of the caregivers reported that HCPs only sometimes or rarely/never had shown interest in how the caregivers had been feeling) and provision of enough information to the caregivers (e.g. 39 were dissatisfied with the amount of time spent on informing caregivers) The patients' adult children and siblings, younger caregivers and caregivers to younger patients tended to report the highest levels of interaction problems and unmet needs.ConclusionsThe caregivers' dissatisfaction with the interaction with HCPs was pronounced. More focus on and involvement of the caregivers, in a way that matches the caregivers' needs, is still warranted.
Supportive Care in Cancer
Line Lund Lone Ross Morten Aagaard Petersen Mogens Groenvold
219621427
Qualitative Assessment of Unmet Information Management Needs of Informal Cancer Caregivers: Four Themes to Inform Oncology Practice.
PURPOSE Family and friends often provide informal care for patients with cancer, coordinating care and supporting patients at home. Stress, depression, and burnout are increasingly recognized among these informal caregivers. Although past research has described a range of needs, including the need for information, details about unmet informational needs for caregivers have not been fully described. We sought to assess unmet information management needs for informal caregivers in the digital era. METHODS This was a qualitative research study with semistructured interviews and focus groups of nonprofessional caregivers for patients with cancer, facilitated using a discussion guide. Eligible caregivers supported patients in the community who were in treatment (chemotherapy or radiotherapy) or completed treatment within 3 years. Participants were recruited using informational flyers at an academic cancer center and in the local community of metropolitan Milwaukee, Wisconsin. Sessions were transcribed verbatim and analyzed inductively to identify themes. RESULTS Thirteen caregivers participated, the majority between 41 and 60 years of age: seven of 13, 53.8% were predominantly women; 10 of 13 (76.9% were educated, 10 of 13 (76.9% had graduated from college; and of modest means, six of 13 (46.2% had household incomes $35,000. Four themes emerged: (1) the information overload paradox, where caregivers felt overloaded by information yet had unmet informational needs; (2) navigating volatility as a caregiver, with changing or unknown expectations; (3) caregivers as information brokers, which placed new burdens on caregivers to seek, share, and protect information; and (4) care for the caregiver, including unmet information needs related to self care. CONCLUSION This study identified several informational challenges affecting caregivers. Caregivers have dynamic and evolving informational needs, and strategies that support caregivers through just in time information availability or dedicated caregiver check ins may provide relief within the stress of caregiving.
JCO clinical cancer informatics
Bradley H Crotty Onur Asan Jeana M Holt Jeanne T Tyszka Jeanne M Erickson Melinda R Stolley Liliana E Pezzin Ann B Nattinger
21582461
The unmet supportive care needs of long term head and neck cancer caregivers in the extended survivorship period.
AIMS AND OBJECTIVES To examine the unmet supportive care needs of long term head and neck cancer caregivers, and the factors associated with those needs. BACKGROUND Research on the unmet needs of head and neck cancer caregivers is lacking, particularly in the long term survivorship period. DESIGN Survey of 197 caregivers. METHODS The study collected information on caregivers' demographic characteristics and their unmet supportive care needs (as measured by the Partners and Caregivers Supportive Care Needs Survey) An overall score of unmet need was generated, as were scores for four separate domains of unmet needs (emotional, health, information and work/social) RESULTS Seventy six percentage of respondents were female, and 88% reported being married or living with a partner. Mean age was 57 years. Most caregivers had low levels of unmet needs. Managing fears about the cancer recurring was the most commonly reported individual need, described by slightly more than one in five respondents. The highest levels of need were located in the emotional and the health services domains. Loneliness and financial stress were consistently and significantly associated with high levels of unmet need in the multivariable analysis. CONCLUSIONS Most head and neck cancer caregivers appear to have low levels of unmet need in the extended survivorship period. The greatest levels of unmet need that are experienced occur in relation to emotional and health service domains. Needs diminish over time. RELEVANCE TO CLINICAL PRACTICE Health professionals should be aware that a minority of long term head and neck caregivers continue to experience strong fears of cancer recurrence. To reduce unmet needs across multiple domains, health professionals should seek to reduce caregivers' feelings of loneliness, and to assist caregivers to reduce the financial burdens that they experience as a result of long term caring.
Journal of clinical nursing
Myles Balfe Katie M O'Brien Aileen Timmons Phyllis N Butow Eleanor O' Sullivan Rachael Gooberman-Hill Linda Sharp
155087528
Influence of time lapse after cancer diagnosis on the association between unmet needs and quality of life in family caregivers of Korean cancer patients.
OBJECTIVE This study explored the association between healthcare needs and quality of life (QoL) of Korean cancer family caregivers according to the time lapse after cancer diagnosis. METHODS Self administered comprehensive needs assessment tool and EuroQol 5 dimension index for 686 cancer family caregivers were classified into four groups according to time lapse after cancer diagnosis =12, 13 36, 37 60,>60 months) We estimated the association between unmet needs and QoL by multiple linear regression analyses after adjusting for age, sex, cancer site and caregivers' comorbid conditions. RESULTS Female or elder caregivers had lower QoL and higher unmet needs. The highest unmet needs existed in healthcare staff domain followed by information/education domain persistently along all periods. QoL of caregivers was significantly associated with family/social support and health/psychological problem during the time lapse of =12 months as well as >60 months. Practical support was consistently associated with QoL across all time lapses. Religious/spiritual support and hospital facilities and services showed significant association with QoL only in =12 months and >60 months respectively. CONCLUSIONS The QoL of Korean cancer family caregivers was differentially associated with their unmet needs according to the time lapse after cancer diagnosis and by specific domains of needs.
European journal of cancer care
Jinyoung Shin Hyeonyoung Ko Jeong-Won Lee Kihyun Kim Yun-Mi Song
195329108
Family Caregivers' Unmet Needs in Long term Cancer Survivorship.
OBJECTIVES To review the family caregivers' unmet needs in the long term phase of survivorship to identify unique challenges faced by family caregivers. DATA SOURCES Research based articles and published reports. CONCLUSION Family caregivers diverge into three distinct groups in the long term survivorship phase: those remaining in care, those whose patients have survived and where care is no longer needed, and those whose patients have died. Their primary unmet needs vary by the different caregivership trajectories. IMPLICATIONS FOR NURSING PRACTICE Comprehensive understanding of family caregivers' unmet needs is required to develop family caregiver care plans in long term survivorship.
Seminars in oncology nursing
Youngmee Kim Charles S Carver Amanda Ting
51711565
Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review
BackgroundThis systematic review aimed to identify the unmet care needs and their associated variables in patients with advanced cancer and informal caregivers, alongside summarizing the tools used for needs assessment.MethodsTen electronic databases were searched systematically from inception of each database to December 2016 to determine eligible studies. Studies that considered the unmet care needs of either adult patients with advanced cancer or informal caregivers, regardless of the study design, were included. The Mixed Methods Appraisal Tool was utilized for quality appraisal of the included studies. Content analysis was used to identify unmet needs, and descriptive analysis was adopted to synthesize other outcomes.ResultsFifty studies were included, and their methodological quality was generally robust. The prevalence of unmet needs varied across studies. Twelve unmet need domains were identified in patients with advanced cancer, and seven among informal caregivers. The three most commonly reported domains for patients were psychological, physical, and healthcare service and information. The most prominent unmet items of these domains were emotional support (10.1 84.4% fatigue (18 76.3% and "being informed about benefits and side effects of treatment" (4 66.7% The most commonly identified unmet needs for informal caregivers were information needs, including illness and treatment information (26 100% and care related information (21 100% Unmet needs of patients with advanced cancer were associated with their physical symptoms, anxiety, and quality of life. The most commonly used instruments for needs assessment among patients with advanced cancer were the Supportive Care Needs Survey (N 8) and Problems and Needs in Palliative Care questionnaire (N 5) The majority of the included studies investigated unmet needs from the perspectives of either patients or caregivers with a cross sectional study design using single time point assessments. Moreover, significant heterogeneity, including differences in study contexts, assessment methods, instruments for measurement, need classifications, and reporting methods, were identified across studies.ConclusionBoth advanced cancer patients and informal caregivers reported a wide range of context bound unmet needs. Examining their unmet needs on the basis of viewing patients and their informal caregivers as a whole unit will be highly optimal. Unmet care needs should be comprehensively evaluated from the perspectives of all stakeholders and interpreted by using rigorously designed mixed methods research and longitudinal studies within a given context.
BMC Palliative Care
Tao Wang Alex Molassiotis Betty Pui Man Chung Jing-Yu Tan